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Auditor-General—Audit reports for 2014-15—No. 33—Performance audit—Organ and tissue donation: Community awareness, professional education and family support: Australian Organ and Tissue Donation and Transplantation Authority


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The Auditor-General ANAO Report No.33 2014-15 Performance Audit

Organ and Tissue Donation: Community Awareness, Professional Education and Family Support

Australian Organ and Tissue Donation and Transplantation Authority

Australian National Audit Office

ANAO Report No.33 2014-15 Organ and Tissue Donation: Community Awareness, Professional Education and Family Support

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© Commonwealth of Australia 2015

ISSN 1036-7632 (Print)  ISSN 2203-0352 (Online)  ISBN 978‐1‐76033‐032‐3 (Print)  ISBN 978‐1‐76033‐033‐0 (Online) 

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ANAO Report No.33 2014-15

Organ and Tissue Donation: Community Awareness, Professional Education and Family Support

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Canberra ACT 29 April 2015

Dear Mr President Dear Madam Speaker

The Australian National Audit Office has undertaken an independent performance audit in the Australian Organ and Tissue Donation and Transplantation Authority titled Organ and Tissue Donation: Community Awareness, Professional Education and Family Support. The audit was conducted in accordance with the authority contained in the Auditor-General Act 1997. Pursuant to Senate Standing Order 166 relating to the presentation of documents when the Senate is not sitting, I present the report of this audit to the Parliament.

Following its presentation and receipt, the report will be placed on the Australian National Audit Office’s website—http://www.anao.gov.au.

Yours sincerely

Ian McPhee

The Honourable the President of the Senate The Honourable the Speaker of the House of Representatives Parliament House Canberra ACT

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  AUDITING FOR AUSTRALIA 

The Auditor‐General is head of the  Australian National Audit Office  (ANAO). The ANAO assists the  Auditor‐General to carry out his  duties under the Auditor‐General  Act 1997 to undertake performance  audits, financial statement audits and  assurance reviews of Commonwealth  public sector bodies and to provide  independent reports and advice for  the Parliament, the Australian 

Government and the community. The  aim is to improve Commonwealth  public sector administration and  accountability. 

For further information contact: 

The Publications Manager  Australian National Audit Office   GPO Box 707  Canberra ACT 2601    Phone:  (02) 6203 7505  Fax:  (02) 6203 7519  Email:  publications@anao.gov.au 

ANAO audit reports and information  about the ANAO are available on our  website: 

http://www.anao.gov.au 

 

Audit Team 

Kylie Jackson  Helen Frost  Fiona Knight   

 

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Contents Abbreviations .................................................................................................................. 7 

Glossary ......................................................................................................................... 8 

Summary and Recommendations ............................................................................ 11 

Summary ...................................................................................................................... 13 

Introduction ............................................................................................................. 13 

Audit objective and scope ....................................................................................... 15 

Overall conclusion ................................................................................................... 16 

Key findings by chapter ........................................................................................... 18 

Summary of entity response ................................................................................... 25 

Recommendations ....................................................................................................... 27 

Audit Findings ............................................................................................................ 29 

1.  Introduction ............................................................................................................. 31 

Background ............................................................................................................. 31 

National reform program ......................................................................................... 31 

Organ donation in Australia .................................................................................... 33 

The Australian Organ and Tissue Donation and Transplantation Authority ........... 34  DonateLife Network ................................................................................................. 34 

Organ and Tissue Donation Reform Package: Mid-Point Implementation Review ............................................................................................................... 35 

Audit objective, criteria and scope .......................................................................... 36 

Structure of report ................................................................................................... 37 

2.  Professional Education ........................................................................................... 38 

Introduction ............................................................................................................. 38 

Australasian Donor Awareness Program ................................................................ 38 

Family Donation Conversation Workshops ............................................................. 40 

Conclusion .............................................................................................................. 45 

3.  Community Awareness and Education ................................................................... 46 

Introduction ............................................................................................................. 46 

National Community Awareness and Education Program ...................................... 46 

OTA’s communications framework ......................................................................... 47 

Advertising campaign .............................................................................................. 50 

Community Awareness Grants program ................................................................. 59 

DonateLife Week ..................................................................................................... 62 

Information and education resources ...................................................................... 68 

Communication with Culturally and Linguistically Diverse Communities ................ 68  Effectiveness of OTA’s Community Awareness and Education Program .............. 71  Conclusion .............................................................................................................. 73 

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4.  Support for Donor Families ..................................................................................... 75 

Introduction ............................................................................................................. 75 

National Donor Family Support Service .................................................................. 75 

Conclusion .............................................................................................................. 81 

5.  Measurement and Reporting .................................................................................. 82 

Introduction ............................................................................................................. 82 

Performance information ......................................................................................... 82 

Internal reporting ..................................................................................................... 85 

External reporting .................................................................................................... 85 

Conclusion .............................................................................................................. 91 

Appendices ................................................................................................................. 93 

Appendix 1:  Entity Response ................................................................................. 95 

Index ............................................................................................................................. 96 

Series Titles .................................................................................................................. 98 

Better Practice Guides ............................................................................................... 102 

 

Tables

Table 1.1:  Structure of chapters .......................................................................... 37 

Table 3.1:  List of OTA’s responsibilities under the National Communications Framework .............................................................. 48 

Table 3.2:  Summary of campaign advertising phases ........................................ 52 

Table 3.3:  Tracking of OTA’s key outcome indicators ......................................... 56 

Table 3.4:  Focus of grants rounds ....................................................................... 60 

Table 3.5:  DonateLife Week events and coverage ............................................. 65 

Table 3.6:  National Community Awareness and Education Program performance indicators ....................................................................... 71 

Table 4.1:  Performance indicators from 2009-10 to 2011-12 ............................ 79 

Table 5.1:  Program 1.1: Objectives and qualitative deliverables ........................ 90 

 

Figures

Figure 3.1:  Map of registered DonateLife Week events since 2011 ..................... 64  Figure 3.2:  Number of AODR registrations ........................................................... 72 

Figure 5.1:  OTA’s potential donor pyramid for 2012 and 2013 ............................ 84 

Figure 5.2:  Number of donors by DBD and DCD ................................................. 86 

Figure 5.3:  Australia’s donor per million population .............................................. 88 

Figure 5.4:  Donor per million population by state in 2014 .................................... 89 

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Abbreviations

ANAO  Australian National Audit Office 

ANZOD  Australia and New Zealand Organ Donation (Registry) 

AODR  Australian Organ Donor Register 

CALD  Culturally and linguistically diverse 

CICM  College of Intensive Care Medicine 

COAG  Council of Australian Governments 

DBD   Donation after Brain Death 

DCD  Donation after Circulatory Death 

DFSC  Donor Family Support Coordinators 

dpmp  Deceased donors per million population 

DSC  Donation Specialist Coordinator 

FDC  Family Donation Conversation (Workshop) 

ICC  Independent Communications Committee 

NDFSS  National Donor Family Support Service 

OTA   Australian Organ and Tissue Donation and Transplantation  Authority 

 

 

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Glossary

Australian  Organ Donor  Register 

The national register for people to record their decision  about becoming an organ and tissue donor for  transplantation after death.  

Collaborative  requesting  model 

A team‐based approach involving the intensive care  specialist, a DonateLife trained requestor and relevant  health professionals raising the opportunity for organ and  tissue donation with families once they understand that  death has occurred or is expected to occur. 

Consent rate   Number of consents as a proportion of the number of  requests made of potential donors. 

Conversion rate  Number of brain‐dead donors as a proportion of the  number of potential donors with confirmed or probable  brain death.  

Designated  requestor model   A team‐based approach involving a DonateLife trained  requestor and relevant health professionals raising the 

opportunity for organ and tissue donation with families  once they understand that death has occurred or is  expected to occur. 

Donation after  brain death  Organ donation after brain death has been determined on  the basis of irreversible cessation of all brain function. 

Donation after  circulatory death  Organ donation after circulatory death has been  determined on the basis of irreversible cessation of blood 

circulation. 

DonateLife  Agencies 

Organ and tissue donation agencies that are responsible for  implementing the national reform program in their  respective state or territory. These agencies employ  specialist staff in organ and tissue donation coordination,  professional education, support for donor families,  communications, and data and audit roles.  

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DonateLife  Audit 

Nationally consistent audit on potential and actual donor  activity used to improve clinical practice in organ donation. 

DonateLife  Network 

National network of organ and tissue donation agencies  and hospital‐based staff, focused on increasing organ and  tissue donation.  

Deceased donors  per million  population  

The most common measure used for international  comparisons of performance in organ and tissue donation.  

Hospital‐based  staff  Specialist hospital staff, including donation specialist  doctors, nurses and nursing coordinators, primarily funded 

by the Australian Government as part of the DonateLife  Network. 

Intensivist   Intensive care medical specialist staff who are involved in  the assessment, resuscitation and ongoing management of  critically ill patients with life‐threatening single and  multiple organ system failure.  

National reform  program   The nine measures that describe the key strategies of the  Australian Government’s 2008 World’s Best Practice 

Approach to Organ and Tissue Donation for  Transplantation.  

Request rate  Number of requests of potential donors as a proportion of  the total number of potential donors.  

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Summary and Recommendations

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Summary

Introduction 1. The  Australian  organ  and  tissue  donation  system  is  based  on  an  ‘informed consent’ (or opt‐in) model, whereby individuals agree to donate their  organs  and  tissue  in  the  event  of  their  death.1  Individuals  can  record  their  consent or objection to becoming an organ and/or tissue donor on the Australian  Organ  Donor  Register  (AODR).2  Regardless  of  whether  an  individual  has  registered their consent for donation, the practice in Australia is to also seek  agreement from a donor’s next of kin before donation proceeds.3 

2. Australia’s rate of organ and tissue donation does not meet the current  demand for transplantation. In 2014, an average of 1632 people were on organ  transplant waiting lists each month, and in total, 1117 people received organ  transplants. In the same year, 5553 people received tissue transplants. 

3. In  October  2006,  the  then  Australian  Government  established  the  National Clinical Taskforce on Organ and Tissue Donation (the Taskforce) to  provide evidence‐based advice on ways to increase the rate of organ and tissue  donation.4  In  response  to  the  Taskforce  report,  the  Australian  Government  announced in July 2008 a national reform program to ‘establish Australia as a  world leader in organ donation for transplantation’.5 Endorsed by the Council  of Australian Governments (COAG), the national reform program committed  $136.4  million  in  new  Australian  Government  funding  over  four  years   (2008-2012) to improve access to transplants through a nationally coordinated  approach to organ and tissue donation. 

                                                      

1

The framework for ‘informed consent’ is established by state and territory Human Tissue Acts. The alternative to ‘informed consent’ is ‘presumed consent’, an opt-out model which presumes consent by adults to donate their organs and tissue in the event of their death, unless they advise otherwise.

2 The Australian Organ Donor Register is administered by the Australian Government Department of Human Services. 3 National Health and Medical Research Council, Organ and Tissue Donation After Death, For Transplantation: Guidelines for Ethical Practice for Health Professionals, NHMRC, Canberra, 2007,

pp. 33-34.

4

The Taskforce reported in January 2008 that there was no clear correlation between models of ‘presumed consent’ and better performance in the rate of organ donation and therefore did not recommend changes to Australia’s consent framework. National Clinical Taskforce on Organ and Tissue Donation, Final Report: Think Nationally, Act Locally, Department of Health and Ageing, Canberra, 2008. 5 K Rudd (Prime Minister) and N Roxon (Minister for Health and Ageing), ‘$136.4 million national plan to

boost organ donation and save lives’, media release, Parliament House, Canberra, 2 July 2008.

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4. The  national  reform  program  had  two  objectives:  to  increase  the  capability and capacity within the health system to maximise donation rates;  and raise community awareness and stakeholder engagement across Australia  to  promote  organ  and  tissue  donation.  Nine  measures  were  endorsed  by  COAG aimed at achieving the two broad program objectives: 

 Measure 1: A new national approach and system - a national authority6  and network of organ procurement organisations. 

 Measure  2:  Specialist  hospital  staff  and  systems  dedicated  to  organ  donation. 

 Measure 3: New funding for hospitals. 

 Measure 4: National professional awareness and education. 

 Measure 5: Coordinated ongoing community awareness and education. 

 Measure 6: Support for donor families. 

 Measure  7:  Safe,  equitable  and  transparent  national  transplantation  process. 

 Measure 8: National eye and tissue donation and transplantation. 

 Measure  9:  Additional  national  initiatives,  including  living  donation  programs.  

5. This audit focussed on Measures 4 to 6 highlighted above, relating to:  professional education; community awareness; and support for donor families. 

6. Measure  1  of  the  national  reform  program  included  establishing  the  Australian Organ and Tissue Donation and Transplantation Authority (OTA)  in January 2009, as well as establishing DonateLife Agencies in each state to  manage  the  donation  process  at  the  state  level.7  OTA  has  overall  national  responsibility  for  the  implementation  of  the  nine  COAG  reform  measures, 

                                                      

6 The Australian Organ and Tissue Donation and Transplantation Authority (OTA) was established in January 2009. 7 Measure 1 was the introduction of ‘a nationally coordinated approach to organ procurement based on world’s best practice models.’ This included the establishment of a new, independent authority ‘to provide

national leadership to the organ and tissue sector and to drive, implement and monitor national reform initiatives and programs.’ Commonwealth of Australia, A world’s best practice approach to organ and tissue donation for Australia: overview, Commonwealth of Australia, Canberra, 2008, p. 3.

Summary

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working  in  collaboration  with  state  and  territory  (state)  based  DonateLife8  Agencies.  

7. OTA  administers  Australian  Government  funding  to  each  state  government to employ DonateLife staff in 72 hospitals9 and eight DonateLife  Agencies; which together with OTA comprise the DonateLife Network. At the  end  of  June  2014,  the  DonateLife  Network  included:  175  hospital‐based  medical and nursing specialists in organ and tissue donation; and 100 staff  (principally specialist nurses) in the eight DonateLife Agencies. 

Audit objective and scope 8. The  audit  objective  was  to  assess  the  effectiveness  of  OTA’s  administration  of  community  awareness,  professional  education  and  donor  family support activities intended to increase organ and tissue donation.  

9. The  high‐level  criteria  developed  to  assist  in  evaluating  OTA’s  performance  relating  to  the  administration  of  the  community  awareness,  professional education and donor family support activities were that OTA:  

 plans and designs targeted activities; 

 effectively  administers  activities  in  accordance  with  relevant  frameworks10; and 

 assesses and reports on the effectiveness of activities.  

10. The  audit  scope  included  an  assessment  of  OTA’s  role  in  delivering  Measures 4, 5 and 6 of the national reform program. For Measure 4, the audit  focussed on OTA’s Professional Education Package. The audit did not assess: the  six remaining measures; the Department of Human Services’ administration of  the  Australian  Organ  Donor  Register  (AODR);  or  state  and  territory  responsibilities under the national reform program.  

                                                      

8 The DonateLife brand is an Australian Government program brand developed by OTA for the organ and tissue sector. 9 These 72 hospitals were chosen by respective states as having the greatest potential for donation. A small number of hospitals outside the DonateLife Network also have the potential for donation. The

addition of new hospitals to the network is reviewed on a case-by-case basis. 10 Relevant frameworks applied to assess this criterion included the Guidelines on Information and Advertising Campaigns by Australian Government Departments and Agencies and the Commonwealth

Grants Rules and Guidelines.

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Overall conclusion 11. The  Australian  Organ  and  Tissue  Donation  and  Transplantation  Authority (OTA) is responsible for leading the implementation of the national  reform program for organ and tissue donation, endorsed by COAG in 2008.  The  reform  program  comprises  nine  measures  intended  to  introduce  a  nationally consistent approach for organ and tissue donation within a sector  which  has  historically  been  state‐based,  and  its  successful  implementation  requires  collaboration  and  consultation  between  OTA  and  key  government  and non‐government stakeholders. The focus of this audit was on the measures  relating  to:  professional  awareness  and  education  (Measure  4);  coordinated  and ongoing community awareness and education (Measure 5); and support  for donor families (Measure 6). 

12. Overall, OTA has made reasonable progress in implementing Measures  4,  5  and  6  of  the  national  reform  program,  including  the  introduction  of  a  Professional  Education  Package  and  National  Donor  Family  Support  Service  (NDFSS). OTA has also undertaken a range of initiatives aimed at increasing  community  awareness  and  education  about  organ  and  tissue  donation  and  transplantation.  Of  particular  note  is  OTA’s  approach  to  engaging  with  culturally  and  linguistically  diverse  (CALD)  communities,  which  has  been  consultative  and  informed  by  relevant  research.  Similarly,  OTA  adopted  an  evidence‐based  approach  to  selecting  the  key  message  for  its  $13.8 million  national  advertising  campaign  conducted  from  2010  to  2012,  which  tracking  research indicated achieved good outcomes against campaign benchmarks in its  first  phase.  However,  a  key  shortcoming  across  the  three  reform  measures  examined in this audit was the absence of suitable performance indicators and  related targets to help assess the effectiveness of initiatives. Further, in relation to  Measures 5 and 6, the audit identified opportunities for OTA to: more actively  facilitate collaboration among key stakeholders; improve the transparency of its  grants  administration;  and  improve  the  consistency  of  support  provided  to  donor families. 

13. Under  Measure  4  (Professional  awareness  and  education),  OTA  introduced a Professional Education Package (the Package) in 2012. The Package  incorporated an existing training program, the Australasian Donor Awareness 

Summary

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Program11, as well as new Family  Donation Conversation (FDC)  Workshops.  Since  the  introduction  of  the  Package,  there  have  been  over  2000  training  participants. At the time of the audit, the Package was being revised, and there  would be benefit in OTA continuing to monitor the ongoing effectiveness and  reach of the Package by introducing relevant internal performance indicators.  OTA can also improve the consistency of the application of the FDC training by  confirming which family consent request model should be adopted nationally,  and promoting the application of this model through the FDC Workshops. 

14. As part of its implementation of Measure 5 (Community awareness and  education), OTA introduced a National Community Awareness and Education  Program.  The  program  aims  to  promote  the  principles  of  a  nationally  consistent  and  coordinated  approach  within  the  organ  and  tissue  donation  sector to community awareness and education. While there has been a high  take‐up of these principles among key community organisation stakeholders,  there  is  scope  for  OTA  to  more  actively  facilitate  collaboration  between  stakeholders so as to extend the reach of community awareness and education  activities.  The  largest  financial  component  of  the  National  Community  Awareness and Education Program was an advertising campaign conducted  by OTA. Tracking research indicated that Phase 1 of the campaign (at a cost of  $9.2 million) achieved improved outcomes against the campaign benchmarks,  while Phase 2 (at a cost of $4.6 million) delivered a more marginal return on  investment, serving largely to help maintain the outcomes of Phase 1.  

15. OTA has also introduced a range of activities and resources as part of  the National Community Awareness and Education Program, including the  Community  Awareness  Grants  program  which  distributes  approximately  $500 000  per  annum  to  grant  recipients  for  community  awareness  and  education activities. However, OTA’s grants guidelines do not fully outline its  grants assessment process, and the ANAO identified an application which was  not funded as part of a competitive grant round, but which received funding  from OTA as part of an unsolicited application process. OTA can improve the  transparency  and  equity  of  its  granting  activity  by  reviewing  its  grants  administration and in particular, informing potential grant funding applicants 

                                                      

11 The Australasian Donor Awareness Program has been delivered in Australia since 1994 and is intended to provide participants with a greater understanding of organ donation and the skills to sensitively conduct conversations with families about organ and tissue donation.

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of all sources of available grant funding and the assessment process applying  to these sources. 

16. As part of its implementation of Measure 6 (Support for donor families)  of the national reform program, OTA introduced the National Donor Family  Support Service (NDFSS) in 2011, an initiative which included revised donor  family support materials and funding to the states for Donor Family Support  Coordinators (DFSCs). A national study of donor family experiences during  2010 and 2011, commissioned by OTA and released in 2014, indicates that there  is scope to improve the level of support for donor families, both in the hospital  setting and after a donation has occurred. The introduction of specific internal  performance  measures  would  help  OTA  assess  effectiveness  and  provide  greater assurance that donor families are receiving consistent levels of support  across Australia. 

17. The  ANAO  has  made  three  recommendations  aimed  at:  improving  stakeholder  engagement;  reviewing  OTA’s  grants  administration;  and  improving donor family support services.  

Key findings by chapter

Professional Education (Chapter 2)

18. Measure 4 of the national reform program required OTA to coordinate  an  ongoing,  nationally  consistent  and  targeted  program  of  professional  development and training for clinicians and care workers involved in organ  and tissue donation. To this end, OTA introduced the Professional Education  Package  (the  Package)  in  2012  which  incorporated  an  existing  training  program,  the  Australasian  Donor  Awareness  Program,  and  two  new  workshops,  a  core  and  practical  Family  Donation  Conversation  (FDC)  Workshop.12 

19. To develop the FDC training, OTA first engaged an Australian training  provider in April 2011. Participant feedback on the pilot training delivered by 

                                                      

12

The core FDC Workshop provides detailed theoretical information about acute grief and communicating with families to support an informed decision in relation to organ and tissue donation. The practical FDC Workshop complements the core FDC Workshop by providing the opportunity to participate in targeted role plays.

In response to a review of the Professional Education Package

undertaken in 2013, which identified some duplication with the College of Intensive Care Medicine (CICM) training, OTA was revising the Package in the course of the audit. OTA advised the ANAO that the Australasian Donor Awareness Program will be replaced with the Introductory Donation Awareness Training Workshop in May 2015.

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the  provider  in  October  2011  indicated  that  it  did  not  adequately  reflect  a  clinical environment and consequently did not fully meet OTA’s requirements.  Consequently,  the  training  materials  were  revised  by  DonateLife  clinical  subject experts in 2011-12 to become the practical FDC Workshop, introduced  in 2012. 

20. In June 2011, OTA also engaged a United States training provider, the  Gift of Life Institute, which OTA advised was the only known organisation  with  experience  in  specific  organ  donation  consent  request  training.  The  Institute was required to revise and deliver its consent request training. This  training  became  the  core  FDC  Workshop  and  was  first  delivered  in  March 2012—one year after the planned delivery for the FDC training. Since its  introduction,  the  workshop  has  been  revised  based  on  feedback  from  participants, as well as professional bodies.  

21. In response to a decline in the number of deceased organ donors in  2014, OTA advised the Senate Community Affairs Legislation Committee in  February 2015  that  there  was  a  clear  difference  in  family  consent  outcomes  when a trained requestor discussed organ donation with families and when an  intensivist13  discussed  donation  with  families.  OTA  acknowledged  that  it  needed  to  reinforce  its  expectation  that  relevant  staff  undertake  the  FDC  training and adopt the FDC model when seeking consent from families. While  the FDC Workshops promote the collaborative requesting model14, it was only  used  in  16 per cent  of  cases  where  consent  was  sought  from  families  for  donation in 2013. However, OTA advised the ANAO that it did not expect the  FDC Workshop participants to apply the collaborative requesting model as it  had  not  yet  been  selected  as  the  national  model,  and  OTA  is  currently  conducting  a  trial  of  the  collaborative  approach  and  another  model,  the  designated requestor model, in select hospitals.15 The results of the trial, which  is expected to be finalised in June 2015, will help OTA select the model to be  adopted  nationally.  Confirming  which  model  will  be  adopted  nationally 

                                                      

13 Intensivists are medical specialist staff involved in providing intensive care medicine, which includes the assessment, resuscitation and ongoing management of critically ill patients. 14 The collaborative requesting model involves a team-based approach involving the intensive care specialist, a DonateLife trained requestor and relevant health professionals raising the opportunity for

organ and tissue donation with families once they understand that death has occurred or is expected to occur. 15

The designated requestor model involves a team-based approach involving a DonateLife trained requestor and relevant health professionals raising the opportunity for organ and tissue donation with families once they understand that death has occurred or is expected to occur.

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should improve the consistency of approach used to seek consent from families  by enabling OTA to promote and monitor its application nationally through  the DonateLife Network.  

22. There  would  also  be  benefit  in  OTA  continuing  to  monitor  opportunities to improve the FDC Workshops in light of feedback from donor  families,  training  participants  and  the  state‐based  DonateLife  Agencies.  For  example,  national  studies  of  donor  family  experiences  have  provided  an  indication  of  areas  the  FDC  Workshops  may  need  to  address,  such  as  the  clarity  of  language  used  by  medical  staff.  The  introduction  of  internal  performance indicators, such as the consistency of approaches towards donor  families,  would  assist  with  assessing  the  effectiveness  and  reach  of  the  Package, as no indicators are currently in place. 

Community Awareness and Education (Chapter 3)

23. OTA  introduced  a  National  Community  Awareness  and  Education  Program, as required under Measure 5 of the national reform program. The  Program: included a National Communications Framework and Charter aimed  at establishing a nationally consistent and coordinated approach to community  awareness  and  education;  and  aims  to  provide  stakeholders  with  access  to  information and resources. 

24. There has been a high take‐up of key elements of the Charter among  the 13 community organisations which were signatories to the Charter. While  OTA  provides  a  range  of  forums  for  stakeholders  to  collaborate  and  share  information,  the  effectiveness  of  its  key  forum,  the  Charter  Signatories  Committee, appears to have diminished over time. Well established forums,  such as the Charter Signatories Committee, can provide a valuable opportunity  for ongoing consultation and collaboration with stakeholders, and OTA could  usefully reflect on how best to harness this potential going forward.  

25. The  largest  financial  component  of  the  Program  was  an  advertising  campaign conducted by OTA from 2010 to 2012, at a cost of $13.8 million. OTA  adopted an evidence‐based approach to selecting a campaign message, which  focussed on promoting family discussion about organ and tissue donation. To 

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assess  the  effectiveness  of  the  advertising  campaign,  OTA  commissioned  tracking research to monitor outcomes against key campaign benchmarks.16  

26. The tracking research for Phase 1 of the campaign indicated that while  there  had  been  an  overall  increase  in  family  discussion  levels,  males  and  people aged 18 to 29 years old and over 65 years old were less likely to have  discussed their donation wishes. The final wave of research for Phase 2 of the  campaign indicated that there was still potential to improve the knowledge  and awareness of people aged 18 to 29 years old as they were the most likely to  be  influenced  by  the  campaign  but  also  the  least  likely  to  have  seen  the  advertising. In summary, the tracking research indicated that Phase 1 of the  campaign (at a cost of $9.2 million) achieved improved outcomes against the  campaign benchmarks, while Phase 2 (at a cost of $4.6 million) delivered a  more  marginal  return  on  investment,  serving  largely  to  help  maintain  the  outcomes of Phase 1.  

27. Consistent with the Guidelines on Information and Advertising Campaigns  by Australian Government Departments and Agencies (March 2010), OTA: tested  the  advertising  materials  with  focus  groups;  submitted  the  relevant  information to the Independent Communications Committee; and completed  internal evaluations of each phase of the campaign.  

28. OTA  has  conducted  eight  Community  Awareness  Grants  Rounds,  which  are  promoted  as  competitive  rounds  for  the  provision  of  Australian  Government  financial  assistance.  The  transparency  of  OTA’s  grants  administration  can  be  improved  by  more  clearly  outlining  the  grants  assessment process in the guidelines for applicants. For example, OTA advised  the ANAO that it reconsiders applications which have equal scores in light of  points of difference and this can result in a further assessment of value for  money. Further, scope, reach and impact are all components of assessing value  for  money,  but  this  is  not  reflected  in  OTA’s  grants  guidelines.  OTA  also  provides funding to organisations through an unsolicited application process,  which is not documented on OTA’s website or in the grant guidelines. The  ANAO identified one applicant that was unsuccessful in a competitive grant  round  but  subsequently  received  funding  for  the  same  activity  as  an  unsolicited  application.  To  improve  equity  and  transparency,  OTA  should 

                                                      

16 Four waves of tracking research were conducted during Phase 1 of the campaign and its extension (Waves 1 to 4), and two further waves of research were conducted during Phase 2 and its extension of the campaign (Waves 5 to 6).

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review  its  grants  administration  with  a  focus  on  informing  potential  grant  funding  applicants  of  all  sources  of  available  funding  and  the  assessment  process applying to these sources. 

29. OTA  is  responsible  for  leading  and  coordinating  an  annual  national  awareness week, known as DonateLife Week. OTA advised the ANAO that the  focus for the week is primarily a media and public relations campaign which is  supported by sector‐driven activities as a secondary focus. OTA commissioned  media  analysis  of  the  2014  DonateLife  Week  which  indicated  that  events  during  the  week  can  be  very  effective  at  generating  media  attention.  At  present, DonateLife Week events occur in limited locations and there is scope  for OTA to encourage a broader geographic reach and range of events, which  may assist in generating additional media interest during DonateLife Weeks.  In  particular,  there  would  be  benefit  from  OTA  encouraging  greater  participation  in  DonateLife  Week  by  non‐government  stakeholders.  Introducing broad targets for the level of activity undertaken by corporate and  community supporters, in the same manner as it does for social media, may  assist OTA to focus efforts on increasing the number and reach of activities  hosted by supporters.  

30. OTA has developed a range of educational resources, including specific  resources  targeted  at  CALD  communities,  which  have  been  identified  by  research commissioned by OTA as a priority group. OTA undertook extensive  consultation  with  faith  and  cultural  leaders  to  develop  a  collection  of  published  statements  of  support  for  organ  and  tissue  donation,  as  well  as  translated videos and brochures. Planning is underway to produce a second  wave of resources aimed at addressing identified misconceptions about organ  and tissue donation that are specific to faith and cultural communities.  

31. OTA identified in its National Communication Strategy 2013-14 four  performance  indicators  to  measure  the  effectiveness  of  the  National  Community Awareness and Education Program. For 2013, in relation to the  four performance indicators, OTA: 

 met  the  target  for:  Australians  have  had  a  family  discussion  about  organ and tissue donation (achieved 75 per cent against a 70 per cent  target); 

 did not meet the targets for the two indicators of: Australians knowing  their family members’ wishes (achieved 53 per cent against a 68 per cent  target); and Australians understanding that family consent is required 

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for  donation  to  proceed  (achieved  70  per  cent  against  a  74  per  cent  target)17; and 

 achieved a 1.3 per cent increase in the number of registrations on the  AODR.18  

Support for Donor Families (Chapter 4)

32. Under Measure 6 of the national reform program, OTA introduced the  National Donor Family Support Service (NDFSS) in 2011 to provide a tailored  and nationally consistent program of support for donor families.  

33. To implement the NDFSS, OTA provides funding to the states for Donor  Family  Support  Coordinators  (DFSCs).  OTA  revised  a  range  of  information  resources  for  families  and  developed  guidelines  for  DFSCs  and  Donation  Specialist Coordinators on how to provide donor family support post‐donation.  At present, the guidelines do not outline the type of support to be provided to  families in the hospital setting and should be enhanced to provide this guidance.  Further,  while  the  guidelines  outline  the  type  of  support  families  should  be  provided post‐donation, a national study of donor family experiences during  2010 and 2011 and released in 2014, indicated that there were varying levels of  support  being  provided  to  donor  families.  For  example,  while  DonateLife  Agencies are required to contact donor families within 24 to 36 hours of donation,  22 per cent of family members did not receive a phone call following donation.19 

34. To assess the effectiveness of support for donor families, OTA had two  performance indicators in place which were discontinued in 2012-13.20 OTA  reported in its annual report that it had met these indicators. However, ANAO 

                                                      

17

OTA advised the ANAO that the targets for indicators one to three were being revised at the time of the audit as research undertaken in 2013 indicated that they were not achievable without another advertising campaign.

18 A target has not been set for this indicator. OTA does not report on AODR registrations. This information was sourced from: Department of Human Services, Australian Organ Donor Register (AODR) Historical Statistics [Internet], DHS, available from [accessed 16 March 2015]. 19 While OTA’s National Organ and Tissue Donor Family Support Service Guidelines indicate that the

donor’s family should be contacted within 24 to 36 hours of donation, OTA advised the ANAO that in practice, the primary contact is with the senior next of kin. Respondents to the national study of donor families included both the donor’s senior next of kin and other family members. OTA advised the ANAO that the survey respondents who indicated that they had not been contacted, may have been family members other than the senior next of kin. 20 The two indicators were: nationally consistent support offered to donor families; and enhanced donor

family support provided through the implementation of a nationally agreed donor family support program.

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analysis indicated that the basis for measuring achievement against the first  performance  indicator  was  too  narrow  to  support  an  assessment  that  the  indicator had been met. Further, OTA had collected insufficient information  from DonateLife Agencies to inform an assessment of achievement against the  second indicator. There have been no new indicators introduced to date, and  consequently,  OTA  is  not  in  a  position  to  assess  the  implementation  of  Measure 6, relating to support for donor families. As a starting point, OTA  should develop internal performance indicators to help assess the effectiveness  of donor family support services. 

Measurement and reporting (Chapter 5)

35. Consistent  with  the  national  reform  program,  OTA  introduced  a  national data collection tool, known as the DonateLife Audit21, to assess state  and  national  potential  for  organ  donation  rates,  identify  missed  donation  opportunities and determine the overall consent rate for organ donation. This  information  complements  the  Australia  and  New  Zealand  Organ  Donation  (ANZOD) Registry by providing data about hospital deaths in the context of  organ donation.  

36. The DonateLife Audit is limited to the DonateLife Network and does not  collect information about eye and tissue donation.22 Further, while the DonateLife  Audit reports information on organ donation after brain death (DBD), it does not  report  information  about  donation  after  circulatory  death  (DCD).  This  limits  OTA’s  capacity  to  report  on  the  total  number  of  potential  donors,  the  donor  family request rate and the consent rate. OTA is planning to develop a definition  of  the  circumstances  that  will  determine  a  potential  DCD  donor,  which  no  country  has  yet  developed,  to  improve  consistency  in  capturing  information  about potential DCD donors. OTA’s planned enhancements will further improve  the usefulness of the information collected through the DonateLife Audit. 

37. OTA’s annual reports indicate that performance against indicators such  as deceased donors per million population (dpmp) and number of donors has  improved  since  the  commencement  of  the  national  reform  program,  but 

                                                      

21 The DonateLife Hospital Performance Audit (DonateLife Audit) was introduced by OTA in 2009-10. It provides for a nationally consistent method of retrospectively auditing data relating to hospital deaths in the context of organ donation.

22 The DonateLife Audit does not collect data on eye and tissue donation because of the broad and complex nature of the eye and tissue donation sector. Instead, this data is collected by the ANZOD Registry through contributions from the Australian eye and tissue banks.

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decreased slightly in 2014.23 However, OTA is not achieving the targets set for  the program’s quantitative performance indicators: donor family request rate  and donor family consent rate.24 OTA advised the Senate Community Affairs  Legislation  Committee  in  February  2015  that  the  decline  was  partly  attributable  to  the  variability  of  donation  outcomes  between  states  and  territories.  OTA  also  highlighted  a  lack  of  consistency  between  states  and  territories in applying the Family Donation Conversation training, which OTA  considered had adversely affected the family consent rate. 

38. Since 2010, OTA has published on its website six‐monthly performance  reports  on  the  implementation  of  the  national  reform  program.  The  performance reports include information on the number of organ and tissue  donors, number of transplant recipients and number of organs transplanted.  OTA advised the ANAO that, in the future, these reports will only be prepared  on an annual basis and the need for periodic reports will be assessed taking  into account agency resources and priorities. The reports prepared to date do  not include information about the number of registrations on the AODR. To  provide a holistic view of the impact of the national reform program, there  would  be  merit  in  OTA  including  the  number  of  registrations  in  its  performance reports.  

Summary of entity response 39. The proposed audit report was provided to the Australian Organ and  Tissue  Donation  and  Transplantation  Authority  (OTA).  OTA’s  summary  response to the proposed report is provided below, while the full response is  provided at Appendix 1. 

The  aim  of  the  Australian  Governmentʹs  national  reform  programme  is  to  implement a nationally coordinated worldʹs best practice approach to organ  and tissue donation for transplantation in collaboration with the states and  territories,  clinicians  and  the  community  sector.  Organ  donation  is  a  rare  event, only around 1‐2% of people who die in hospitals, die in the specific  circumstances required to be a potential organ donor.  

                                                      

23 In the decade prior to the launch of the national reform program, Australia’s rate of dpmp remained relatively constant at around 10 dpmp. Following annual increases, this figure rose to 16.9 dpmp in 2013 and then declined somewhat to 16.1 dpmp in 2014.

24 For 2013-14, OTA reported a: 96 per cent request rate against a target of 100 per cent; 62 per cent consent rate against a target of 75 per cent; and 53 per cent conversion rate against a target of 70 per cent.

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The Organ and Tissue Authority (OTA) thanks the generous Australians and  their  families  who  save  and  transform  the  lives  of  transplant  recipients  through organ and tissue donation.  

The  OTA  notes  the  audit  reportʹs  conclusions  and  agrees  with  the  recommendations of the proposed report. 

 

Recommendations

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Recommendations

Recommendation No.1

Para 3.13

To  better  harness  the  capacity  of  the  organ  and  tissue  donation  sector  and  extend  the  reach  of  community  awareness  and  education  activities,  the  ANAO  recommends  that  OTA  more  actively  facilitate  collaboration  between  Charter  signatories  through  established forums. 

OTA response: Agreed. 

Recommendation No.2

Para 3.52

To  improve  transparency  and  equity,  the  ANAO  recommends that OTA review its grants administration,  with a particular focus on informing potential applicants  of  all  available  sources  of  grant  funding  and  the  assessment process applying to each source.  

OTA response: Agreed. 

Recommendation No.3

Para 4.26

To  improve  the  services  provided  to  donor  families,  including those families for which consent is provided  but donation does not proceed, the ANAO recommends  that OTA: 

(a) enhance  the  existing  Roles  and  Responsibilities  Guidelines  and  National  Organ  and  Tissue  Donor  Family Support Service Guidelines to provide more  information  about  the  level  of  support  families  should be provided in the hospital setting; and 

(b) in  consultation  with  the  state  and  territory  governments,  introduce  internal  performance  measures  to  assess  the  consistency  and  effectiveness of donor family support services. 

OTA response: 

Part (a):   Agreed. 

Part (b):  Agreed,  subject  to  consultation  with  state  and  territory governments.

 

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Audit Findings

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1. Introduction

This chapter provides an overview of the Australian Government’s national reform  program to increase the rate of organ and tissue donation. It also provides an outline of  the audit objective, criteria and approach.  

Background 1.1 Australia’s rate of organ and tissue donation does not meet the current  demand for transplantation. In 2014, an average of 1632 people were on organ  transplant waiting lists each month, and in total, 1117 people received organ  transplants. In the same year, 5553 people received tissue transplants. 

1.2 To  increase  Australia’s  national  performance  in  organ  and  tissue  donation,  the  then  Australian  Government  established  the  National  Clinical  Taskforce on Organ and Tissue Donation (the Taskforce) in October 2006. The  Taskforce was asked to provide evidence‐based advice on ways to increase the  rate  of  organ  and  tissue  donation  with  a  view  to  informing  the  prospective  reform agenda.25 The final report, submitted by the Taskforce to the Government  in  January  2008,  identified  systemic  problems  with  the  Australian  organ  donation and transplantation sector and made 51 recommendations to improve  the performance of Australia’s donation and transplantation system.  

National reform program 1.3 On 2 July 2008, the Australian Government announced a national reform  program  to  ‘establish  Australia  as  a  world  leader  in  organ  donation  for  transplantation’.26 Endorsed by the Council of Australian Governments (COAG),  the  national  reform  program  committed  $136.4  million  in  new  Australian  Government  funding  over  four  years  (2008-2012)  to  improve  access  to  transplants  through  a  nationally  coordinated  approach  to  organ  and  tissue  donation. 

                                                      

25 The Taskforce reported in January 2008 that there was no clear correlation between models of ‘presumed consent’ and better performance in the rate of organ donation and therefore did not recommend changes to Australia’s consent framework. National Clinical Taskforce on Organ and Tissue Donation, Final Report: Think Nationally, Act Locally, Department of Health and Ageing, Canberra, 2008.

26 K Rudd (Prime Minister) and N Roxon (Minister for Health and Ageing), ‘$136.4 million national plan to boost organ donation and save lives’, media release, Parliament House, Canberra, 2 July 2008.

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1.4 The  national  reform  program  had  two  objectives:  to  increase  the  capability and capacity within the health system to maximise donation rates;  and raise community awareness and stakeholder engagement across Australia  to  promote  organ  and  tissue  donation.  Nine  measures  were  endorsed  by  COAG aimed at achieving the two broad program objectives: 

 Measure  1:  A  new  national  approach  and  system  -  a  national  authority27 and network of organ procurement organisations. 

 Measure  2:  Specialist  hospital  staff  and  systems  dedicated  to  organ  donation. 

 Measure 3: New funding for hospitals. 

 Measure 4: National professional awareness and education. 

 Measure 5: Coordinated ongoing community awareness and education. 

 Measure 6: Support for donor families. 

 Measure  7:  Safe,  equitable  and  transparent  national  transplantation  process. 

 Measure 8: National eye and tissue donation and transplantation. 

 Measure  9:  Additional  national  initiatives,  including  living  donation  programs.  

1.5 This audit focussed on Measures 4 to 6 highlighted above, relating to:  professional education; community awareness; and support for donor families. 

Professional awareness and education (Measure 4)

1.6 Measure  4  of  the  national  reform  program  is  intended  to  facilitate  ongoing development and training for clinical and professional staff involved  in organ and tissue donation. The measure is expected to drive cultural and  organisational  change  in  public  and  private  hospitals  and  contribute  to  the  front‐end clinical work of increasing donation and transplantation rates.  

Community awareness and education (Measure 5)

1.7 Measure 5 aims to increase public knowledge about organ and tissue  donation and build confidence in Australia’s donation system. The provision 

                                                      

27 The Australian Organ and Tissue Donation and Transplantation Authority (OTA) was established in January 2009.

Introduction

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of  nationally  consistent  information  about  organ  and  tissue  donation  is  expected  to  contribute  to  an  increase  the  number  of  families  consenting  to  donation.  

Support for donor families (Measure 6)

1.8 Measure 6 provides for a nationally coordinated approach to support  the  families  of  deceased  donors.  New  funding  was  provided  for  the  development  of  a  national  donor  family  support  program  so  that  donor  families receive the support they need in the hospital setting and afterwards.  

Organ donation in Australia 1.9 The  Australian  organ  and  tissue  donation  system  is  based  on  an  ‘informed  consent’  (or  opt‐in)  model,  whereby  individuals  agree  to  donate  their  organs  and  tissue  in  the  event  of  their  death.28  The  Australian  Organ  Donor Register (AODR), administered by the Department of Human Services,  enables individuals to record their consent or objection to becoming an organ  and/or  tissue  donor.  As  at  31  January  2015,  there  were  approximately  six million registrations on the AODR.29  

1.10 Regardless  of  whether  an  individual  has  provided  consent  for  donation, the practice in Australia is to also seek agreement from a donor’s  next  of  kin  before  donation  proceeds.30  The  Australian  Organ  and  Tissue  Donation  and  Transplantation  Authority  (OTA)  reported  in  its  2014  performance  report  that  in  2014,  there  were  approximately  700  potential  donors and 680 requests were made to their next of kin for organ and tissue  donation to proceed. Of these requests, consent was given in 61 per cent of  cases.  This  resulted  in  the  transplantation  of  1193  organs,  as  a  number  of  organs can be donated by each donor.  

1.11 The number of deceased donors per million population (dpmp) is the  most common measure used for international comparisons of performance in  organ and tissue donation. In the decade prior to the launch of the national  reform  program  in  2008-09,  Australia’s  donor  rate  remained  relatively                                                        

28

The framework for ‘informed consent’ is established by state and territory Human Tissue Acts. The alternative to ‘informed consent’ is ‘presumed consent’, an opt-out model which presumes consent by adults to donate their organs and tissue in the event of their death, unless they advise otherwise.

29 This figure includes 24 554 registered objections. 30 National Health and Medical Research Council, Organ and Tissue Donation After Death, For Transplantation: Guidelines for Ethical Practice for Health Professionals, NHMRC, Canberra, 2007, pp. 33-34.

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constant at around 10 dpmp. This figure rose to 16.9 dpmp in 2013 and then  decreased slightly to 16.1 in 2014.31  

The Australian Organ and Tissue Donation and Transplantation Authority 1.12 OTA was established in January 2009 as the first measure of the national  reform program. OTA was intended to lead a coordinated national approach to  organ and tissue donation in partnership with the states and territories (states),  clinicians and the community sector. Operating under the Australian Organ and  Tissue Donation and Transplantation Authority Act 2008, OTA is an independent  statutory authority within the Department of Health portfolio.32  

1.13 At  30  June  2014,  OTA  employed  26.2  full‐time  equivalent  staff,  including a Chief Executive Officer and one Senior Executive Service officer. A  three‐tier committee structure is in place to provide program governance and  sector‐specific  advice.  OTA  reports  publicly  on  the  implementation  of  the  national reform program, as well as broader measures associated with organ  and tissue donation, in performance reports33 and through its annual report.  

1.14 The Australian Government announced on 13 May 2014 that OTA would  merge with the National Blood Authority by 1 July 2015. 

DonateLife Network 1.15 OTA has overall national responsibility for the implementation of the  nine COAG reform measures, working in collaboration with state and territory  based DonateLife34 Agencies. Under Measure 1 of the national reform program,  DonateLife  Agencies  were  established  in  each  state  to  manage  the  donation  process at the state level. Led by their respective State Medical Directors and a  National  Medical  Director,  DonateLife  Agencies  are  responsible  for  the 

                                                      

31 Overall, Australia was ranked 28 th in the world in 2009 (11.3 dpmp) and 20 th

in the world in 2013.

32 OTA was a prescribed agency under the Financial Management and Accountability Act 1997. From 1 July 2014, OTA is subject to the Public Governance, Performance and Accountability Act 2013. The Department of Health was known as the Department of Health and Ageing prior to a machinery of government change in September 2013. 33 These reports were biannual from 2011 to 2013. OTA advised the ANAO that it will prepare an annual

report for 2014 and make an assessment year-to-year regarding whether it will prepare biannual reports. 34 The DonateLife brand is an Australian Government program brand developed by OTA for the organ and tissue sector.

Introduction

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coordination of organ and tissue donations, professional and clinical education,  support for donor families, community awareness and data collection.  

1.16 OTA provides Australian Government funding to each state government  to employ DonateLife staff in 72 hospitals35 and the DonateLife Agencies. At the  end of June 2014, the DonateLife Network included 175 hospital‐based medical  and nursing specialists in organ and tissue donation and 100 staff (principally  specialist  nurses)  in  the  eight  DonateLife  Agencies.  The  National  Roles  and  Responsibility  Guidelines36,  developed  by  OTA  in  consultation  with  the  state  governments, inform the recruitment of DonateLife staff.  

1.17 Funding  to  the  states  is  provided  through  two‐year  funding  agreements which require each jurisdiction to maintain an organ and tissue  donation service delivery model consistent with the national reform approach  and  in  accordance  with  relevant  ethical  guidelines  and  clinical  protocols.37  Funding agreements include an agreed performance and reporting framework  to enable OTA to monitor progress in each jurisdiction.  

Organ and Tissue Donation Reform Package: Mid-Point Implementation Review 1.18 In  2011,  the  then  Parliamentary  Secretary  for  Health  and  Ageing  commissioned  a  review  of  the  implementation  of  the  national  reform  program—the  Organ  and  Tissue  Donation  Reform  Package:  Mid‐Point  Implementation Review Report. Overall, the review found that while significant  progress had been achieved for some measures, only moderate or relatively  little progress had been made in implementing the remaining measures.38 The  report observed that OTA had made significant progress in establishing the  DonateLife Network and supporting the placement of dedicated clinical staff  in hospitals.  

                                                      

35 These 72 hospitals were chosen by states as having the greatest potential for donation, meaning there remain a small number of hospitals outside of the DonateLife Network with the potential for donation. The addition of new hospitals to the network is reviewed on a case-by-case basis.

36 These guidelines were revised in 2014. 37 Clinical protocols guide national clinical practice by specifying the eligibility criteria for entry onto organ transplant waiting lists; donor suitability criteria for organ allocation for transplantation; and the organ allocation protocols for determining transplant recipients.

38 Australian Healthcare Associates, Organ and Tissue Donation Reform Package: Mid-Point Review Report, AHA, Melbourne, 2011.

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1.19 The report identified a number of areas for improvement, including:  strengthening  clinical  practice  improvement  programs  and  establishing  a  clinical  governance  framework;  enhancing  national  performance  measurement;  and  expanding  professional  education  for  the  DonateLife  Network  and  broader  hospital  staff.  A  focus  on  these  areas  is  reflected  in  OTA’s strategic priorities going forward, as agreed between the Australian and  state governments.  

Audit objective, criteria and scope 1.20 The  audit  objective  was  to  assess  the  effectiveness  of  OTA’s  administration  of  community  awareness,  professional  education  and  donor  family support activities intended to increase organ and tissue donation.  

1.21 To  assist  in  evaluating  OTA’s  performance  in  terms  of  the  audit  objective, the ANAO developed the following high‐level criteria relating to the  administration  of  community  awareness,  professional  education  and  donor  family support activities: 

 OTA plans and designs targeted activities; 

 OTA  effectively  administers  activities  in  accordance  with  relevant  frameworks39; and 

 OTA assesses and reports on the effectiveness of activities.  

1.22 The  audit  scope  included  an  assessment  of  OTA’s  performance  in  relation to Measures 4, 5 and 6 of the national reform program.40 For Measure  4, the audit focussed on OTA’s Professional Education Package. The audit did  not assess: the other six reform measures; the Department of Human Services’  administration of the AODR; or the legislation and policy regulating organ and  tissue donation in Australia.  

Audit methodology

1.23 The ANAO’s audit methodology included:  

 interviewing:  

                                                      

39 Relevant frameworks applied to assess this criterion included the Guidelines on Information and Advertising Campaigns by Australian Government Departments and Agencies and the Commonwealth Grants Rules and Guidelines.

40 These measures are discussed in paragraphs 1.6 to 1.8.

Introduction

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 relevant  OTA  staff,  including  State  Medical  Directors  and  a  number of DonateLife Agency staff; and 

 stakeholders, including non‐government organisations; and 

 reviewing:  

 advertising,  awareness  raising  and  professional  education  materials and associated evaluation results; 

 compliance  with  the  Australian  Government’s  2010  Guidelines  on  Information  and  Advertising  Campaigns  by  Australian  Government Departments and Agencies;  

 compliance  with  the  July  2009  and  July  2013  Commonwealth  Grant Guidelines; and 

 relevant performance measurement and reporting material.  

1.24 The  audit  was  conducted  in  accordance  with  the  ANAO  Auditing  Standards at a cost to the ANAO of approximately $393 588. 

Structure of report 1.25 The structure of the audit report is outlined in Table 1.1. 

Table 1.1: Structure of chapters

Chapter Overview

2. Professional Education Examines OTA’s Professional Education Package, including the development of the Family Donation Conversation Workshops.

3. Community Awareness and Education Examines the management and effectiveness of OTA’s Community Awareness and Education Program.

4. Support for Donor Families Examines the donor family support resources and services funded by OTA.

5. Measurement and Reporting Examines OTA’s internal and external reporting, including its key performance indicators.

 

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2. Professional Education

This  chapter  examines  OTA’s  Professional  Education  Package,  including  the  development of the Family Donation Conversation Workshops. 

Introduction 2.1 Under Measure 4 of the national reform program, OTA is required to  coordinate  an  ongoing,  nationally  consistent  and  targeted  program  of  professional  development  and  training  for  clinicians  and  care  workers  involved in organ and tissue donation. The program, which includes OTA’s  Professional Education Package (the Package), is expected to build on existing  programs,  including  the  Australasian  Donor  Awareness  Program  (refer  to  paragraphs 2.3 to 2.8).  

2.2 OTA introduced the Package in 2012.41 Initially the Package included  two  Australasian  Donor  Awareness  Program  workshops  and  two  Family  Donation Conversation (FDC) Workshops—one core and one practical.42 OTA  was  revising  the  Package  during  this  audit,  to  include:  an  Introductory  Donation  Awareness  Training  workshop;  the  two  FDC  Workshops;  and  advanced training to focus on current issues.43  

Australasian Donor Awareness Program 2.3 The  Australasian  Donor  Awareness  Program  has  been  delivered  in  Australia  since  1994  and  is  intended  to  provide  participants  with  a  greater  understanding  of  organ  and  tissue  donation  and  the  skills  to  sensitively  conduct  conversations  with  families  about  organ  and  tissue  donation.  The  workshops  are  aimed  at  staff  involved  in  end‐of‐life  care,  including 

                                                      

41

OTA is also developing training specifically for the eye and tissue donation sector, which has not been reviewed as part of this audit. 42 The core FDC Workshop provides detailed theoretical information about acute grief and communicating with families to support an informed decision in relation to organ and tissue donation.

The practical FDC Workshop complements the core FDC Workshop by providing the opportunity to participate in targeted role plays.

43 The Introductory Donation Awareness Training workshop will replace the Australasian Donor Awareness Program and is discussed at paragraph 2.6. The advanced training was scheduled for introduction in 2015. OTA also engaged a training provider to prepare an e-learning package to accompany the FDC Workshops at a cost of $42 524.

Professional Education

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intensivists.44 The program was managed by the Australian Red Cross Service  until OTA assumed responsibility on 30 June 2010.  

2.4 As part of the Australasian Donor Awareness Program, OTA delivered  an ongoing training schedule comprising two workshops:  

 general workshops: designed for registered nurses from critical care,  emergency  and  operating  theatres,  allied  health  and  palliative  care  professionals, social workers, chaplains and pastoral care workers; and 

 medical workshops: designed for intensivists and trainees in intensive  and emergency medicine, and intended to provide an overview of the  organ and tissue donation process and information on communicating  with and caring for families.  

2.5 The  program  was  revised  following  a  review  of  the  Professional  Education Package by OTA in 2013, which identified some duplication with  the training provided by the College of Intensive Care Medicine (CICM). From  July 2014,  the  medical  workshop  was  discontinued  and  its  key  grief  and  bereavement components were included in the core FDC Workshop, discussed  in the next section.  

2.6 The remaining general workshop will be replaced with an Introductory  Donation Awareness Training workshop, which is currently being developed.  The  introductory  workshop  will  provide  a  general  overview  of  organ  and  tissue donation to DonateLife Network staff, hospital‐based staff and students.  OTA  advised  the  ANAO  that  it  has  rescheduled  the  introduction  of  the  introductory workshop from July 2014 to May 2015. 

2.7 In its annual report, OTA does not report on the number of participants  who  have  attended  the  Australasian  Donor  Awareness  Program  training.  However,  in  its  March  2014  report  to  the  Australian  Health  Ministers’  Advisory Council, OTA reported that 67 workshops had been held with over  1000 participants since the introduction of the Professional Education Package  in 2012.45  

2.8 OTA  does  not  have  internal  performance  indicators  to  assess  the  effectiveness of the Australasian Donor Awareness Program. There would be 

                                                      

44 Intensivists are medical specialist staff involved in providing intensive care medicine, which includes the assessment, resuscitation and ongoing management of critically ill patients. 45 Including 13 medical and 54 general workshops.

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benefit  in  OTA  introducing  internal  performance  indicators  for  the  Introductory Donation Awareness Training workshop, following its launch, to  measure and assess its effectiveness and reach.  

Family Donation Conversation Workshops 2.9 The  FDC  Workshops  were  introduced  in  2012  as  part  of  OTA’s  Professional Education Package. They are directed to health professionals and  are a means for promoting a nationally consistent and best practice approach  to requesting consent for donation from potential donors’ next of kin, and to  assist families to make a decision in relation to organ and tissue donation. The  introduction of the workshops was considered necessary as practices varied  between states and in some instances between hospitals in the same state.  

Development of the workshops

2.10 OTA engaged an Australian training provider in April 2011 to develop  family donation conversation training: one concise module to be integrated into  the  Australasian  Donor  Awareness  Program;  and  a  comprehensive  one‐day  workshop.46 The purpose of the workshops was to provide participants with the  skills to inform families about donation and support them to make a donation  decision. 

2.11 A pilot of the one‐day workshop developed by the Australian provider  was held in October 2011. Participant feedback on the pilot indicated that it did  not adequately reflect a clinical environment and therefore, did not meet OTA’s  requirements. Consequently, the training materials were provided to a group of  DonateLife clinical subject experts in 2011 to finalise. The materials comprise the  basis for the current practical FDC Workshop (refer to paragraph 2.2).  

2.12 In June 2011, OTA also engaged a United States training provider, the  Gift Of Life Institute (the Institute), to deliver two of its training workshops in  Australia.47  OTA  understood  that  the  Institute  was  the  only  known  organisation  with  a  request  for  consent  training  module  and  advised  the 

                                                      

46 The $47 800 procurement involved a direct source process. OTA considered that this direct source approach was consistent with the 2008 Commonwealth Procurement Guidelines as the procurement was below the $80 000 threshold for open tender. Department of Finance and Deregulation (now the Department of Finance), Commonwealth Procurement Guidelines, DoFD, Canberra, 2008, p. 30.

47 This procurement of up to $74 000 also involved a direct source process. OTA considered that this direct source approach was consistent with the 2008 Commonwealth Procurement Guidelines as the procurement was below the $80 000 threshold for open tender. Department of Finance and Deregulation, Commonwealth Procurement Guidelines, DoFD, Canberra, 2008, p. 31.

Professional Education

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ANAO that the Institute’s workshops were expected to provide an advanced  level of training for clinicians, whereas the training being developed by the  Australian  provider  was  expected  to  provide  practical  training  on  communicating sensitively.  

2.13 The Institute delivered two of its workshops under its first contract.48  Based on this material, the Institute was engaged under a second contract to  develop and deliver a revised workshop, as well as train DonateLife Network  staff to deliver the workshop.49 

Delivery of the workshops

2.14 The FDC Workshops commenced in March 2012—one year after the  planned delivery date. Since the core FDC Workshops were introduced across  all states in 2012, OTA has reported that: 

 30  core  FDC  Workshops  have  been  held,  with  more  than  700  participants; and 

 35 practical FDC Workshops have been delivered to 401 participants. 

2.15 The Institute prepared two reports based on the training it delivered  across six states during March and May 2012. The reports identified some areas  for improvement in the training, which the Institute implemented.50  

2.16 The  FDC  Workshops  promote  a  consistent  model  for  requesting  consent  for  donation  from  families,  known  as  the  collaborative  requesting 

                                                      

48 Under the first contract, the Institute also developed an e-learning module to accompany the training developed by the Australian provider. It was deemed to be unsuitable for the Australian audience and consequently, was not introduced. Consequently, OTA has engaged another provider to develop FDC e-learning training at a cost of $42 524 (refer to Footnote 43).The Institute also conducted a quality assurance review of the training developed by the Australian provider.

49 OTA executed two contracts with the Institute and three variations. To date, the total value of these contracts has been US$795 144. OTA reported the contracts and variations on AusTender, which provides for centralised reporting on Australian Government contracts.

50 These improvements involved combining and shortening two components of the training to enable more opportunities for the participants to practice the skills they were learning.

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model.51 The reports concluded that in some workshops, there was a lack of  acceptance  from  participants  about  the  need  to  change  the  family  consent  request approach. There were also concerns raised by participants regarding  the proposed change in their roles and that the collaborative requesting model  was potentially coercive. Overall, the second report noted that the participants  did not have a clear understanding of the initiatives being progressed by OTA,  including the change in consent request approach.  

2.17 OTA  and  the  Institute  revised  the  FDC  materials  between  September 2013  and  August  2014,  to  incorporate  the  family  communication  elements  from  the  discontinued  medical  Australasian  Donor  Awareness  Program workshop.52 The revised FDC Workshop was delivered as a pilot in  March 2014. The Institute prepared a further report about the pilot and did not  recommend any further changes to the training.  

2.18 The  revised  workshop  was  also  delivered  to  the  CICM  and  the  Australian and New Zealand Intensive Care Society in April 2014.53 Feedback  from these bodies was that the training was an improvement on the previous  iteration but that it could be further enhanced. Specific feedback regarding the  wording  and  relevance  of  some  materials  was  provided  to  OTA  and  this  feedback was actioned, where OTA considered it appropriate.  

2.19 There would be benefit in OTA continuing to monitor opportunities to  improve the FDC Workshops. National studies of donor family experiences  provide  an  indication  of  issues  which  the  FDC  Workshops  may  need  to  address  further.  For  example,  a  national  study  of  donor  family  experiences  during 2010 and 2011 suggested that the language used by medical staff in  discussion with families was an issue in some instances.54 Eighteen per cent of 

                                                      

51 OTA consulted with the DonateLife State Medical Directors and Agency Managers in July 2011 to determine the most appropriate requesting model to promote in the training and decided on the collaborative requesting model. The collaborative requesting model involves a team-based approach involving the intensive care specialist, a DonateLife trained requestor and relevant health professionals raising the opportunity for organ and tissue donation with families once they understand that death has occurred or is expected to occur. The model promotes a ‘balanced’ approach to communicating with families, which includes explaining the positive aspects of donation while reassuring families that any decision they make will be supported. This approach differs from the ‘neutral’ approach to explaining organ and tissue donation previously adopted in most hospitals, which did not involve discussing the positive aspects of donation.

52 Discussed in paragraph 2.5. 53 CICM trainees registered from 1 January 2015 are required to complete the FDC training. 54 This study was undertaken in 2013-14 and released by OTA in 2014. Organ and Tissue Authority, National study of family experiences of organ and tissue donation: Wave 1-2010 and 2011, OTA,

2014, Canberra.

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study participants only ‘somewhat’ agreed that the language used by medical  staff was clear and easy to understand and 14 per cent of participants only  ‘somewhat’ agreed that they had sufficient opportunity to ask questions.  

2.20 There is also scope for OTA to consider introducing variations of the  FDC  Workshops  to  more  effectively  target  the  needs  of  staff  involved  in  end‐of‐life patient care. In discussing the review of the Professional Education  Package  implemented  in  2014,  members  of  OTA’s  Jurisdictional  Advisory  Group55 suggested that an abridged version of the FDC could be introduced for  staff who are not involved in requesting consent but who are involved with  supporting donor families.  

Measurement of the workshops

2.21 OTA  collects  feedback  from  participants  following  the  FDC  Workshops. OTA advised the ANAO that feedback is reviewed by facilitators  at the conclusion of the first day of training so that any issues or concerns are  addressed on the second day. Further, OTA’s National Training Coordinator  reviews  feedback  from  each  workshop  and  discusses  any  issues  with  facilitators and local DonateLife Agencies, if necessary. The Coordinator also  provides feedback to OTA to be considered for review and so that feedback  can be circulated to all facilitators.  

2.22 As mentioned in paragraph 2.14, OTA reports on the number of FDC  Workshop  participants.  However,  OTA  has  not  developed  internal  performance  indicators  for  the  FDC  Workshops,  to  help  assess  their  contribution to the professional training effort. Overall, the intended outcome  of the Professional Education Package is to contribute to an increase in the  family consent rate. There is scope for OTA to consider the applicability of  internal performance indicators, such as the consistency of approaches towards  donor families (refer to paragraphs 2.23 to 2.25).  

Effectiveness of the workshops

2.23 Overall,  the  FDC  Workshops  are  targeted  at  improving  the  family  consent rate. In 2014, for the first year since the commencement of the national  reform program, there was a decline in the number of deceased organ donors,  which OTA has partly attributed to lower family consent rates in some states. 

                                                      

55

The Jurisdictional Advisory Group is the key governance committee for the DonateLife Network. It comprises State Medical Directors and state health department representatives.

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OTA  advised  the  Senate  Community  Affairs  Legislation  Committee  in  February 2015 that there was a clear difference in family consent outcomes  when a trained requester discussed organ donation with families and when an  intensivist discussed donation with families. To address variability in family  consent rates, OTA acknowledged that it needed to reinforce its expectation  that relevant staff undertake the FDC training and apply the training when  seeking consent from families.  

2.24 The  FDC  Workshops  were  introduced  to  promote  a  nationally  consistent and best practice approach to requesting consent from families. As  discussed in paragraph 2.16, the FDC Workshops promote the collaborative  requesting model. The 2013 DonateLife Audit56 reported that in 61 per cent of  cases where consent was sought from families for donation, the request was  made  by  the  treating  intensivist,  and  a  collaborative  requesting  model  was  used in only 16 per cent of cases. 

2.25 However,  OTA  advised  the  ANAO  that  it  did  not  expect  the  FDC  Workshop participants to apply the collaborative requesting model as it had  not yet been selected as the national model. OTA is currently conducting a trial  of  the  collaborative  approach  and  another  model,  the  designated  requestor  model, in select hospitals.57 Based on the results of the trial, which is expected  to be finalised in June 2015, and following consultation within the DonateLife  Network  and  state  governments,  OTA  will  select  the  model  to  be  adopted  nationally. Confirming which model to adopt nationally will assist to improve  the consistency of approaches to requesting consent from families as it will  enable  OTA  to  promote  and  monitor  the  application  of  the  selected  model  within the DonateLife Network.  

   

                                                      

56 The DonateLife Hospital Performance Audit (DonateLife Audit) was introduced by OTA in 2009-10. It provides for a nationally consistent method of retrospectively auditing data relating to hospital deaths in the context of organ donation.

57

The designated requestor model involves a team based approach involving a DonateLife trained requestor and relevant health professionals raising the opportunity for organ and tissue donation with families once they understand that death has occurred or is expected to occur.

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Conclusion 2.26 As  required  under  Measure  4  of  the  national  reform  program,  OTA  introduced the Professional Education Package to address an identified gap in  education.  The  Package  incorporates  the  existing  Australasian  Donor  Awareness  Program,  which  is  expected  to  be  replaced  by  the  Introductory  Donation Awareness Training workshop in May 2015. 

2.27 The Package also incorporates the core and practical FDC Workshops,  which  over  1100  participants  have  attended  since  they  were  introduced  in  2012.  However,  there  were  some  shortcomings  with  the  development  and  delivery of the FDC Workshops; in particular, the engagement of a provider  which  did  not  fully  meet  OTA’s  training  requirements,  and  delays  in  the  introduction of the Workshops. 

2.28 In  2014,  the  number  of  deceased  organ  donors  decreased  slightly,  which OTA has partly attributed to low family consent rates in some states.  OTA  acknowledged  that  it needed  to  reinforce  its  expectation  that relevant  staff  undertake  and  apply  the  FDC  training  when  seeking  consent  from  families.  Confirming  which  model  to  adopt  nationally  will  enable  OTA  to  promote  and  monitor  the  application  of  the  selected  model  within  the  DonateLife Network and assist with improving the consistency of approaches  to donor families.  

2.29 Further, there would be merit in OTA continuing to assess the need for  enhancements to the FDC Workshops, as well as to the Professional Education  Package as a whole. There are no internal performance indicators relating to  the Australasian Donor Awareness Program or FDC Workshops to help OTA  assess their contribution to professional training. The introduction of internal  performance indicators would assist with assessing the effectiveness and reach  of the Professional Education Package. 

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3. Community Awareness and Education

This  chapter  examines  the  management  and  effectiveness  of  OTA’s  Community  Awareness and Education Program. 

Introduction 3.1 To  improve  public  knowledge  about  organ  and  tissue  donation,  Measure 5 of the COAG national reform program provided for coordinated  and ongoing community awareness and education.58 The three key elements of  Measure  5  are:  a  national  community  awareness  framework;  a  national  community awareness charter; and an ongoing national community awareness  and education program.  

3.2 OTA’s National Communication Framework and Charter form part of  the  National  Community  Awareness  and  Education  Program,  which  has  included a national advertising campaign running from 2010 to 2012. Other  elements of the program are: a grants program; a national awareness week;  information  and  education  resources;  community  outreach;  and  media  and  public relations. 

National Community Awareness and Education Program 3.3 The  overall  aim  of  OTA’s  Community  Awareness  and  Education  Program  is  to  contribute  to  increases  in  organ  and  tissue  donation.  OTA  promotes  a  ‘Discover,  Decide  and  Discuss’  message  directed  to  the  community: 

 Discover:  promote  nationally  consistent  factual  information  about  organ  and  tissue  donation,  the  benefits  of  transplantation  and  the  importance  of  family  discussion  and  knowledge  of  each  other’s  donation decisions.  

 Decide:  encourage  Australians  to  make  an  informed  decision  about  becoming  a  potential  donor  and  register  their  decision  on  the  Australian Organ Donor Register (AODR).  

                                                      

58 The nine COAG reform measures are listed at paragraph 1.4 of this audit report.

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 Discuss: increase the number of Australian families that discuss and  know each other’s decisions on organ and tissue donation.  

OTA’s communications framework 3.4 A  National  Communications  Framework  (the  Framework)  was  developed by OTA in early 2009 in consultation with sector stakeholders to:  establish the parameters of a nationally consistent and coordinated approach  to community awareness and education; and provide stakeholders with access  to useful information and resources.  

3.5 In November 2009, OTA launched the DonateLife brand and website as  part of a national communications platform for the organ and tissue sector. The  DonateLife logo became the official symbol for organ and tissue donation in  Australia, featuring in all materials developed by OTA. Stakeholders were also  encouraged to use the DonateLife logo alongside their existing brand. The state  organ  and  tissue  donation  agencies  became  the  DonateLife  Agencies  and  adopted  the  DonateLife  name  and  brand.  In  establishing  a  social  media  presence,  OTA  created  a  DonateLife  Facebook,  Twitter,  Instagram  and  Twibbon identity to assist with community awareness and education.  

3.6 OTA  also  introduced  the  National  Communications  Charter  (the  Charter),  to  encourage  governments  and  stakeholders  to  sign  up  to  best  practice principles for community awareness, education and communication  activities, including a commitment to use consistent language and messages.  There  has  been  a  high  take‐up  of  key  elements  of  the  Charter  among  the  13 community  organisations  which  were  signatories  to  the  Charter.  For  example,  90  per  cent  of  the  community  organisation  signatories  use  the  national logo in their communications, in conjunction with their own branding.  

3.7 In  2014,  OTA  developed  a  new  DonateLife  Stakeholder  Engagement  Framework to replace the National Communications Framework and Charter.  The new framework incorporates three stakeholder tiers:  

 DonateLife Partners are those who have organ and tissue donation for  transplantation as part of their core business, including current Charter  signatories; 

 DonateLife Community Partners represent a range of sporting clubs,  schools, small businesses and foundations who want to be associated  with  DonateLife  but  do  not  have  organ  and  tissue  donation  or  transplantation as their core business; and  

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 DonateLife  Corporate  Partners  from  the  business  sector  seeking  to  promote  and  facilitate  education  and  awareness  of  organ  and  tissue  donation with their employee and customer base.  

3.8 As at January 2015, OTA had 52 DonateLife Partners, 20 DonateLife  Community Partners and five Corporate Partnerships. Each partner has signed  a  DonateLife  Partnership  Agreement,  committing  to  the  promotion  and  distribution  of  the  DonateLife  key  messages  and  materials  and  use  of  the  partner  logo,  in  addition  to  organising  a  minimum  of  one  community  awareness activity per year.  

3.9 The previous Framework outlined the responsibilities of the Australian  Government and Charter signatories in relation to community awareness and  education.  The  ANAO  assessed  the  extent  to  which  OTA  has  fulfilled  its 

responsibilities  under  the  Framework,  with  the  results  summarised  in  Table 3.1. 

Table 3.1: List of OTA’s responsibilities under the National Communications Framework

Responsibilities Status

Provide communication materials and resources 

Encourage the use of the national logo for organ and tissue donation 

Make available publication quality logo kits 

Maintain a dedicated website 

Advise organisations where necessary on how to amend current activities to cater for the introduction of a new communications framework 

Assist signatories in handling issues as they arise 

Encourage and facilitate collaboration between signatories 

Provide the opportunity to apply for funding for community awareness and education activities 

Source: ANAO analysis and DonateLife National Communications Framework 2011.

Legend:  = fully met the responsibility.

 = partially met the responsibility.

3.10 Table 3.1 indicates that OTA has largely met its responsibilities under  the Framework. However, there remains scope to more actively encourage and  facilitate  collaboration  among  Charter  signatories.  This  is  consistent  with  OTA’s obligations under the national reform program to develop a framework 

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that encourages ‘stakeholders to collaborate and build on each other’s efforts  and avoid unnecessary duplication of work, research and resources’.59  

3.11 OTA  advised  the  ANAO  that  it  encourages  collaboration  and  information  sharing  among  Charter  signatories  through  a  range  of  mediums  including committees, newsletters and emails. A key vehicle for collaboration is  the Charter Signatories Committee, which is used for: OTA to update members 

on  the  progress  of  the  national  reform  program,  including  the  National  Community Awareness and Education Program; and for Charter signatories to  share their plans, demonstrate how they align with the national reform program  and identify opportunities for sector participation. Information on events being  planned  by  stakeholders  is  also  shared  at  Charter  Signatories  Committee  meetings and is included on a national calendar of events.60 

3.12 While the Charter Signatories Committee was originally intended as a  collaborative  forum,  its  effectiveness  in  this  respect  appears  to  have  diminished  over  time.  The  frequency  of  meetings  has  reduced  from  six‐monthly to annually, and representatives from DonateLife Agencies have  ceased attending meetings. Further, the minutes of meetings examined by the  ANAO  indicate  that  meetings  now  largely  focus  on  the  provision  of  information  from  OTA,  with  a  lesser  focus  on  identifying  opportunities  for  collaboration. Established forums such as the Charter Signatories Committee  provide  a  valuable  opportunity  for  ongoing  consultation  and  collaboration  between OTA and stakeholders, and there would be merit in OTA reflecting  on how best to harness this potential going forward.  

                                                      

59

Commonwealth of Australia, A world’s best practice approach to organ and tissue donation for Australia: overview, Commonwealth of Australia, Canberra, 2008, p. 8. 60 The national calendar of events includes events to be conducted by government and non-government stakeholders in the organ and tissue sectors. It enables Charter signatories to plan and implement

complementary localised community awareness and education.

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Recommendation No.1 3.13 To better harness the capacity of the organ and tissue donation sector  and extend the reach of community awareness and education activities, the  ANAO recommends that OTA more actively facilitate collaboration between  Charter signatories through established forums.  

OTA’s response

3.14 Agreed. 

Advertising campaign 3.15 Research undertaken in 200761 indicated that while over 90 per cent of  Australians support organ and tissue donation, this level of support was not  demonstrated  in  the  proportion  of  actual  donors.  A  number  of  factors  can  influence  behaviour  and  attitudes  in  relation  to  organ  and  tissue  donation,  such  as  knowledge  and  beliefs  about  donation.  This  research  and  other  research  undertaken  by  two  research  agencies  in  2009,  informed  OTA’s  decision to focus its advertising effort on promoting family discussion about  organ and tissue donation.  

Campaign messaging and selection

3.16 OTA’s  advertising  campaign,  ‘Discuss  it  today,  OK’,  was  aimed  at  increasing  awareness  about  the  importance  of  family  discussion  among  Australians. The campaign’s call to action, and the primary objective of the  campaign, was for Australians to know, understand and accept the wishes of  their family members by discussing organ and tissue donation and sharing  their wishes with family members. 

3.17 The primary target audience for the campaign was families as they are  required to provide consent for organ donation to proceed. Three segments  were  identified  within  this  primary  target  audience:  people  who  were  undecided  about  organ  donation;  people  who  had  registered  to  be  organ  donors; and non‐registered donors who had decided to be organ donors.  

3.18 To develop the campaign, OTA undertook a select tender process and  approached five advertising agencies to provide submissions on a campaign 

                                                      

61 This research was commissioned by the then Department of Health and Ageing to inform a communications strategy about organ and tissue donation.

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which included: a television commercial, radio and print advertisements and  internet banners.62 The campaigns proposed by the five agencies were tested  by a research agency.63  

3.19 The report issued by the research agency, summarising the results of  the testing, advised that three of the five proposed campaigns had potential.  However, the report noted that one of the proposed campaigns was a clear 

preference,  and  was  recommended  because  each  media  component  of  the  campaign (i.e. television and radio) tested well and contributed to a cohesive  campaign.  Further,  the  preferred  campaign  had  the  largest  proportion  of  participants identifying it as their first choice among the tested campaigns. The  tender evaluation panel, however, ranked OTA’s chosen campaign, ‘Discuss it  today,  OK’,  higher  than  the  recommended  campaign  following  a  value  for  money assessment.64 

Campaign strategy

3.20 The campaign was undertaken in two phases at a cost of $13.8 million  (refer to Table 3.2). Both phases were extended, with Phase 1 extended twice.  These  extensions  were  designed  to  supplement  the  primary  phases  of  the  campaign and to raise awareness during the 2011 and 2012 DonateLife Weeks.  OTA  commissioned  an  agency  to  undertake  tracking  research  during  the  campaign  to  monitor  its  effectiveness65,  and  also  used  the  results  of  the  tracking research to inform the later phases of the campaign.  

                                                      

62 The advertising agencies were sourced from an Australian Government multi-use list. This procurement was not examined in detail by the ANAO. 63

The testing involved 25 group discussions and 15 in-depth interviews. Testing was undertaken in seven locations (including four metropolitan and three regional centres) across four states. 64 This value for money assessment included three key criteria: achieving the requirement; tenderer’s capacity and infrastructure; and whole of projects costs. 65 This was the same research agency engaged to carry out the original testing of campaign materials.

The ANAO did not examine the procurement in detail.

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Table 3.2: Summary of campaign advertising phases

Phase Message Media channels Timeframe Cost 1

Phase 1 ‘Discuss it today, OK’ Television, radio, magazines,

outdoor, online and cinema

May to June 2010 $6.4 million

Extended Phase 1 ‘Discuss it today, OK’

Online advertising and social video November 2010 to December 2011

$2.8 million

Second extension of Phase 1

‘Any day is a good day to talk about it’

Television, print and online component February to May 2011

Phase 2 ‘Know their wishes’ Television, print, online and outside

advertising

May to August 2011 $2.9 million

Extended Phase 2 ‘Know their wishes’

Television and online advertising February to April 2012 $1.7 million

Source: ANAO analysis.

Note 1: These costs included: developing the campaign materials; purchasing media placements; producing and distributing materials; and undertaking the tracking research.

3.21 Phase  1  was  launched  with  a  call  to  action  for  family  members  to  discuss their donation wishes—in effect for people to tell family members their  wishes. This message was consistent with research undertaken in 2007 which  showed that most respondents were in favour of a communications campaign  that emphasised telling those close to them of their own wishes in relation to  donation, rather than asking about the other person’s wishes (59 per cent and  30 per cent respectively). The tracking research results showed that Phase 1 of  the campaign was effective at increasing: family discussion rates; awareness of  family members’ wishes; and awareness that family consent is required for  donation against benchmark levels (refer to paragraphs 3.31 to 3.36).66  

3.22 The message for Phase 2 was developed in response to the tracking  research, which showed that a higher proportion of people indicated that they  had  advised  their  family  members  of  their  donation  wishes  than  the  proportion of people who indicated they knew their family members’ donation  wishes.  Phase  2  focussed  on  the  less  popular  message—to  ‘ask’  family  members  about  their  wishes—in  order  to  encourage  people  who  were  uncomfortable with initiating a discussion about organ and tissue donation. 

                                                      

66 OTA engaged an agency to undertake a benchmark survey and six waves of tracking research throughout the campaign.

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Overall,  while  the  tracking  research  indicated  that  the  Phase  2  campaign  resulted  in  higher  rates  of  discussion  and  awareness  of  the  role  of  family  consent, these outcomes were only marginally higher than those achieved in  Phase 1 (refer to Table 3.3). 

3.23 The second extension of Phase 1 and the extension of Phase 2 coincided  with the 2011 and 2012 DonateLife Weeks. The message, ‘Any day is a good  day  to  talk  about  it’  and  associated  advertising  materials  were  specifically  developed for the 2011 DonateLife Week. This revised message was expected  to generate a sense of urgency for having the discussion about organ and tissue  donation, as well as give people permission to initiate the discussion. 

Testing

3.24 In  addition  to  the  testing  outlined  in  paragraphs  3.18  to  3.19,  OTA  commissioned  testing  of  revised  campaign  materials,  consistent  with  the  Australian Government’s campaign advertising guidelines then in effect (the  advertising guidelines).67 This testing was conducted by the research agency  which had earlier advised OTA, and was intended to provide assurance that  the advertising messages were clear and that the advertisements had an impact  across different demographics.  

3.25 The Phase 1 campaign materials were tested four times. In the second  round of testing, similar areas for improvement were identified as in the first  round of testing despite OTA having made changes to address these issues. Of 

most significance was the recommendation made after testing to improve the  clarity of the message in the television commercial about the need to have a  discussion with family members regarding organ and tissue donation.68 This  was  identified  as  an  area  for  improvement  in  the  first,  second  and  fourth  rounds of testing for the Phase 1 materials.69 OTA advised the ANAO that it  considered the recommendations made as a result of testing and implemented  those changes considered appropriate.  

                                                      

67 Department of Finance and Deregulation, Guidelines on Information and Advertising Campaigns by Australian Government Departments and Agencies, Department of Finance and Deregulation, Canberra, 2010, p. 8.

68 There were two other similar suggestions which were made in relation to the second round of testing: using a different image for the print advertisement and shortening the internet banner. 69

The third round of testing was focussed on using a potential alternate tagline of ‘Of course’ instead of ‘OK’.

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3.26 In respect to the Phase 2 materials, areas identified for improvement in  testing had been addressed by the second round of Phase 2 testing. However,  there was limited testing undertaken of the Phase 2 messaging—particularly in  regional areas—to demonstrate that this would be an effective message.70 OTA  advised the ANAO that the Phase 2 testing methodology was recommended  by the research agency based on its available budget.  

Review and approval by the Independent Communications Committee

3.27 Under  the  2010  advertising  guidelines,  the  role  of  the  Independent  Communications  Committee  (ICC)71  was  to  consider  whether  advertising  campaigns  valued  at  more  than  $250 000  complied  with  key  aspects  of  the  advertising guidelines, and provide advice to the relevant agency regarding  compliance.  In  total,  OTA  met  with  the  ICC  eight  times  and  submitted  for  consideration  its  advertising  materials,  Chief  Executive  certification72,  compliance statement in relation to the advertising guidelines, testing results,  and media plan.  

3.28 The advertising guidelines also required that campaigns comply with  relevant legislation and procurement rules.73 OTA reported a legislative breach  to the ICC in its October 2009 ICC submission. OTA noted that there were  breaches  relating  to  the  financial  approval  requirements  established  by  the  Financial  Management  and  Accountability  Regulations  (1997)  in  relation  to  the  appointment of public relations and research companies.74 OTA reported that it  subsequently reviewed and improved internal business processes as a result of  identifying these breaches.  

                                                      

70

The first round was undertaken in three locations which were Sydney, Brisbane and Bendigo. The second round of testing was only conducted in Sydney and Brisbane. 71 The ICC was appointed to provide advice to Financial Management and Accountability Act 1997 (FMA Act) agencies in relation to proposed advertising campaigns valued at more than $250 000. The ICC was

disbanded with the release of interim guidelines in November 2013, which did not make provision for third party scrutiny and advice on campaign compliance with government guidelines. The Australian Government announced in December 2014 that from 1 February 2015, the ICC would be re-established. 72 Six Chief Executive certifications were submitted to the ICC dated: 18 May 2010, 9 May 2011, 17 December 2010, 1 March 2011, 1 December 2011 and 1 November 2010. 73 Department of Finance and Deregulation, Guidelines on Information and Advertising Campaigns by Australian Government Departments and Agencies (March 2010), Department of Finance and Deregulation, Canberra, 2010, p. 9. 74 Specifically, Regulations 9 and 13 which, at that time, established the financial framework requirements for the commitment of public money.

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Performance and outcome indicators for Phases 1 and 2

3.29 OTA identified a range of internal performance indicators for Phases 1  and 2 of the campaign:  

 website statistics, online social media activity and online search engine  key word hits; 

 the  number  of  enquiries  from  the  general  public  to  the  DonateLife  Network;  

 news  and  editorial  media  coverage  and  post  campaign  analysis  of  media placements by the preferred Australian Government provider;  and  

 the number of new registrations on, or updates to, the AODR.  

3.30 Phase 1 of the campaign also included a performance indicator relating  to  the  number  of  families  who  initiate  the  discussion  about  donation  in  a  hospital setting. OTA advised that this performance indicator was not used in  Phase 2 as it would be difficult to directly attribute such an outcome to the  advertising campaign.  

3.31 OTA’s key internal outcome indicators for tracking the effectiveness of  the campaign were the levels of: 

 family discussion in the past 12 months;  

 reporting the discussion as memorable; 

 awareness of family members’ wishes; and 

 knowledge of the role of family consent. 

3.32 As discussed in paragraph 3.20, OTA engaged an external agency to  undertake a benchmark survey and six waves of tracking research throughout  the campaign.75 Table 3.3 summarises the results of the tracking research for  OTA’s key outcome indicators.  

                                                      

75 The term ‘wave’ is used to refer to the six rounds of tracking research conducted.

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Table 3.3: Tracking of OTA’s key outcome indicators

Indicator Bench

mark (%)

Wave 1

(%)

Wave 2

(%)

Wave 3

(%)

Wave 4

(%)

Wave 5

(%)

Wave 6

(%)

Phase 1 Phase 2

Had a family discussion (in the past 12 months)

48 59 58 53 57 60 58

Discussion was memorable

n/a n/a 83 81 82 81 81

Awareness of family members’ wishes 51 60 57 54 55 57 56

Awareness that consent is required

64 72 73 70 71 74 70

Source: OTA internal document.

Note: The Wave 6 tracking research also asked whether families had ever had a discussion regarding organ and tissue donation and reported a 77 per cent response rate. OTA commissioned a seventh wave of research which was carried out in 2013, after the advertising campaign had ended. The response rate for whether families had ever had a discussion about organ and tissue donation was 75 per cent. The research results for Wave 7 are reported in Table 3.6.

3.33 The  research  indicated  that  overall,  the  outcomes  for  Phase  1  of  the  campaign  tracked  above  the  three  benchmark  indicators  adopted  for  the  campaign, while  in  Phase 2,  overall  outcomes  improved  marginally  against  two indicators and remained stable against one. In summary, Phase 1 of the  campaign (at a cost of $9.2 million) achieved improved outcomes against the  campaign benchmarks, while Phase 2 (at a cost of $4.6 million) delivered a  more  marginal  return  on  investment,  serving  largely  to  help  maintain  the  outcomes of Phase 1.  

3.34 Overall,  between  the  benchmark  and  Wave  6  results,  there  was  a  10 per cent  increase  in  family  discussions;  a  five per cent  increase  in  the  awareness  of  family  members’  wishes;  and  a  six per cent  increase  in  the  proportion  of  people  who  understood  that  family  consent  is  required  for  donation to proceed. 

3.35 The tracking research for Phase 1 noted that while there had been an  increase in family discussion levels, males and people aged 18 to 29 years old  and over 65 years old were less likely to have discussed their donation wishes.  Consequently, in its evaluation of Phase 1, OTA identified people aged 18 to  29 years old, males and people aged over 65 years old as groups which required  further  attention.  OTA  advised  the  ANAO  that  it  implemented  a  range  of  campaign  initiatives  targeted  at  young  adults,  including  media  strategies, 

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videos, postcards and a Youth Support Kit. Notwithstanding these initiatives,  the Wave 6 research results indicated that there was still potential to improve the  knowledge and awareness of people aged 18 to 29 years old as they were the  most likely to be influenced by the advertising campaign but the least likely to  have seen the advertising.  

3.36 There was a six per cent increase in awareness that consent is required  between  the  benchmark  and  Wave  6  testing  (to  70 per cent).  However,  awareness among people aged 18 to 29 years old in Wave 6 was lower than the  general  benchmark  level  of  56 per cent.  Although  this  is  a  low  rate  of  awareness for young people, it represented an improvement of three per cent  against the benchmark level (53 per cent). 

Objectives of the campaign

3.37 The three overarching objectives of the campaign were to: 

 encourage Australians to discuss organ and tissue donation with their  families and to understand the role of the family in providing consent  for donation to proceed; 

 increase  the  number  of  Australian  families  who  know,  accept  and  commit to uphold each other’s wishes; and 

 increase the number of families who consent to and initiate organ and  tissue donation requests. 

3.38 Through  the  tracking  research  results,  OTA  monitored:  discussion  levels; awareness that family consent is required for donation to proceed; and  the proportion of families who indicated that they knew their family members’  wishes (refer Table 3.3). In Wave 6 of the tracking research, participants were  also  asked  whether  they  would  uphold  their  family  members’  wishes  regarding  donation,  however,  this  question  was  not  included  in  the  earlier  waves  of  research.  Ninety‐two  per  cent  of  the  respondents  indicated  they 

would uphold their family members’ wishes. 

3.39 During the course of the campaign, there was no information available  on the level of family initiated discussion in hospital settings about organ and  tissue  donation  as  this  information  was  only  collected  from  2013  using  the  DonateLife Audit tool.  

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3.40 Contributing  to  an  increase  in  the  family  consent  rate  is  an  overall  objective  of  the  Community  Awareness  and  Education  Program.76  OTA  advised that between 2010 and 2012, there was an increase of seven per cent in  family consent rates from 54 per cent to 61 per cent. These results were below  the target level of 75 per cent which has been in place since 2011-12.77  

Evaluations of the campaign

3.41 Consistent  with  the  2010  advertising  guidelines78,  OTA  undertook  evaluations  of  each  phase  of  the  campaign  including  the  extended  phases.  Timely  and  robust  analysis  of  the  progress  of  initiatives  enables  entities  to  identify and address potential issues with implementation and contributes to  improvement processes.79 Evaluations should identify benefits realised as well  as opportunities for improvement. Similarly, the 2010 advertising guidelines  indicated  that  campaign  evaluations  should  assess  the  effectiveness  of  government campaigns.  

3.42 OTA’s evaluations assessed the effectiveness of media channels, as well  as the advertisements. OTA also included two ‘lessons learned’ sections in its  evaluations; one was focussed on the campaign activities and the second was  focussed on the management of the campaign. OTA’s evaluations of Phase 1  and the extension of Phase 1 observed scope for improvement in respect to  campaign  activities  and  management,  and  identified  initiatives  which  had  worked well and should be repeated. While OTA’s evaluations for Phase 2 and  the extension of Phase 2 identified initiatives which worked well, it did not  identify  any  areas  for  improvement,  notwithstanding  the  marginal  improvement in outcomes reported for Phase 2 by the tracking research (refer  to paragraph 3.33).  

Post-campaign activities

3.43 Since  July  2012,  information  regarding  the  correlation  between  knowledge of family members’ wishes and the consent rate has been collected  through the DonateLife Audit. The 2013 DonateLife Audit results indicated                                                        

76 OTA advised that this family consent indicator is influenced by both the clinical reform agenda and other community awareness and education activities. 77 The target level was previously 70 per cent. In 2011, OTA estimated that if 75 per cent of families agreed to organ donation, Australia could achieve a deceased donor per million population (dpmp)

rate of 25 dpmp. 78 Department of Finance and Deregulation, op cit., 2010, p. 9. 79 ANAO Better Practice Guide—Successful Implementation of Policy Initiatives, October 2014, p. 62.

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that  there  is  a  higher  consent  rate  among  families  who  know  the  donation  wishes of potential donors. In 2013, of the 508 requests for donation: 

 248  families  knew  the  wishes  of  the  potential  donor  and  187  (or  75 per cent) of these families provided consent for donation; and 

 132 families did not know the donation wishes of the potential donor  and 59 (or 45 per cent) of these families provided consent for donation.  

3.44 For  the  remaining  128  families,  it  was  unknown  whether  the  family  knew  the  wishes  of  the  potential  donor  as  this  information  had  not  been  collected for the DonateLife Audit. Of these 128 families, 69 (or 54 per cent)  provided consent for donation.  

Community Awareness Grants program 3.45 Since  2009,  OTA  has  administered  a  Community  Awareness  Grants  program.80 The objective of the grants program is to ‘assist organisations with  projects or activities that contribute to improving awareness and engagement  of the Australian community, the non‐government sector, donor families and  others involved in increasing organ and tissue donation.’81  

3.46 There  have  been  seven  Community  Awareness  Grant  rounds  from  November 2009 to December 2013, totalling $2.4 million. OTA conducted its  eighth grant round during the course of this audit.82 The focus of the grant  rounds has differed over time, as summarised in Table 3.4. 

                                                      

80

Under section 11 (1) (g) of the Australian Organ and Tissue Donation Transplantation Authority Act 2008, OTA’s Chief Executive Officer can make a grant of financial assistance, on behalf of the Australian Government, in relation to organ or tissue donation and transplantation matters. The Minister for Health is advised of the outcome of the relevant grant round, including grant recipients and unsuccessful grant applications. 81 OTA, internal document. 82 OTA advised the ANAO that 22 organisations received total funding of $462 064 in the eighth grant

round. The grant assessment and allocation process applied in this grant round was not reviewed in detail by the ANAO.

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Table 3.4: Focus of grants rounds

Focus Round

1 2 3 4 5 6 7 8

DonateLife Week events     

Activities and events which were targeted at culturally and linguistically diverse (CALD) communities

   

Activities that complement OTA’s work of improving community awareness and education        

Source: ANAO analysis.

Promotion of grants

3.47 Successive grant rounds have been promoted through OTA’s website, a  national  media  release,  social  media  and  in  The  Australian  newspaper.  All  DonateLife Agencies are encouraged to promote grant rounds and OTA emails  organisations in the organ and tissue sector, past grant applicants and other  key  stakeholders  to  advise  them  of  grants  rounds.  OTA  has  also  hosted  teleconferences to assist applicants with completing their application form by  providing an overview of the process and the type of information which is  required  for  each  criterion.  Further,  the  guidelines  encourage  applicants  to  contact OTA or their local DonateLife Agency to discuss how to best align their  proposed activity with DonateLife Week and broader DonateLife activities at a  national and local level.  

Grants administration

3.48 An  internal  audit  of  OTA’s  grants  management  was  completed  in  August 2013. The audit report noted that OTA’s grants management practices  were mostly in line with the June 2013 Commonwealth Grant Guidelines and had  regard to the ANAO’s Better Practice Guide on grants administration.83 One  recommendation was made in relation to improving the internal policies and  procedures on managing grants as well as implementing a specific training  program for OTA staff involved in managing grants.84 This recommendation  was agreed in part by OTA, which did not consider that the development of 

                                                      

83 ANAO Better Practice Guide—Implementing Better Practice Grants Administration, December 2013. 84 The internal audit did not specify the grant rounds assessed.

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internal guidance was necessary given that only a small number of staff were  engaged in the grant assessment process and these staff were expected to refer  to the official guidance, such as the Commonwealth Grant Guidelines, issued by  the Department of Finance. However, OTA did agree to an ongoing grants  management  training  program  for  staff.  OTA  advised  the  ANAO  that  staff  involved  in  procurement  and  funding  activities  undertake  regular  training,  and that in 2013, all OTA staff had undertaken high level procurement and  grant funding training. 

3.49 As  required  by  the  Commonwealth  Grants  Rules  and  Guidelines  (the  grants guidelines)85, OTA has publicly available guidelines for the program. However, there remains scope for OTA to better align the program specific  guidelines  with  OTA’s  grants  assessment  process,  to  improve  transparency  and equity. In particular: 

 OTA’s guidelines for the eighth round of grants did not indicate that  DonateLife Agencies are involved in reviewing applications. 

 For  applications  which  are  scored  equally,  OTA  advised  the  ANAO  that it reconsiders the applications in light of points of difference and  this  can  result  in  a  further  assessment  of  value  for  money.86  This  reconsideration process is not outlined in OTA’s grant guidelines.  

 The grant application form provides that scope, reach and impact are  all components of assessing value for money. However, scope, reach  and impact are not mentioned in the program guidelines and are not  defined for the benefit of applicants and assessors.  

3.50 A recurring theme in the ANAO’s audits of grants administration over  a  number  of  years  has  been  the  importance  of  grant  programs  being  implemented  in  a  manner  that  accords  with  published  program  guidelines.  Similarly, the grants administration framework was developed based, in part,  on recognition that potential applicants and other stakeholders have a right to  expect that program funding decisions will be made in a manner, and on a  basis, consistent with the published program guidelines. The experience of the 

                                                      

85 Department of Finance, Commonwealth Grants Rules and Guidelines, Department of Finance, 2014, Canberra, p. 20. The grants rules and guidelines replaced the Commonwealth Grant Guidelines, following the introduction of the Public Governance, Performance and Accountability Act 2013.

86 The ANAO also identified in two rounds, two applications which scored higher than other funded applications but which were not funded.

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grants management process to date suggests there would be benefit in OTA  better aligning assessment processes adopted with its published guidelines.  

3.51 OTA advised the ANAO that it receives approximately two or three  requests each year for funding outside of grants rounds, and on 14 occasions  OTA has funded organisations through an unsolicited application process. On  one  occasion  an  application  which  was  unsuccessful  in  a  grant  round  was  subsequently  funded  following  receipt  of  a  further  application  outside  the  grants  process.  In  total,  approximately  $220 000  has  been  provided  from  unallocated  Measure  5  funds  for  unsolicited  applications,  which  were  not  assessed as part of the regular competitive grants assessment process. OTA  also advised the ANAO that it applied its program guidelines to unsolicited  applications.  However,  the  provision  of  ad  hoc  grants  funding  outside  the  competitive public process raises issues of equity and transparency in grants  administration and there would be merit in OTA advising potential applicants  of all available sources of grant funding and applicable assessment processes. 

Recommendation No.2 3.52 To  improve  transparency  and  equity,  the  ANAO  recommends  that  OTA review its grants administration, with a particular focus on informing  potential  applicants  of  all  available  sources  of  grant  funding  and  the  assessment process applying to each source.  

OTA response

3.53 Agreed. 

DonateLife Week 3.54 OTA is responsible for leading and coordinating a national awareness  week  for  organ  and  tissue  donation.  The  week,  called  DonateLife  Week,  is  designed  to  raise  community  awareness  and  support  for  organ  and  tissue  donation. OTA also uses DonateLife Week to launch various initiatives and  often  targets  its  Community  Awareness  Grants  program  towards  activities  occurring in that week. The total cost of coordinating the week for the last  three years was $122 421, plus the cost of any merchandise distributed. 

3.55 OTA advised the ANAO that DonateLife Week is primarily a media  and public relations campaign which is supported by sector‐driven activities as  a secondary focus. OTA prepares a communication plan for the Week which  outlines:  the  aims  and  objectives  of  the  week;  key  messages;  spokespeople; 

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media  relations;  corporate  and  community  support;  DonateLife  Network  events; and evaluation and reporting. 

3.56 While events are a secondary focus for OTA, they have proven to be very  successful  at  generating  media  attention.  For  example,  in  2014  a  community  awareness grant recipient featured in more than twice as many media items than  the combined total for lead spokespeople in the DonateLife Network.  

Reach of DonateLife events

3.57 In 2014, 40 per cent of registered DonateLife Week events were in the  same postcode as a DonateLife Network hospital; that is, 126 of 315 events.  Fifty‐five of these events had the word ‘hospital’ in their address suggesting  that they were held at hospitals. A further 33 events had the word ‘university’  in their address. When combined, this indicates that at least 28 per cent of the  registered events for DonateLife Week 2014 were at a hospital or university.  

3.58 OTA  advised  the  ANAO  that  DonateLife  Week  is  supported  by   sector‐driven events and as a consequence, it would expect that a significant  number of events would be organised by DonateLife Agencies and held in the  same  postcode  as  a  DonateLife  Network  hospital.  Further,  one  of  the  Community Awareness Grants was provided to conduct information stalls at  universities.  

3.59 There is scope for OTA to encourage a broader range of events, both  within and external to the sector, to raise awareness of organ and tissue donation  among the general community as well as priority groups, such as males, older  people, CALD communities and Indigenous communities. Further, there is not a  broad  geographic  reach  of  registered  events  in  DonateLife  Week.  A  map  of  registered events since 2011 (refer to Figure 3.1)87, indicates that there is limited  reach of activities in regional and remote parts of Australia and that events are  mostly held around DonateLife Network hospitals—indicated by a triangle.  

                                                      

87 Event locations are shaded in yellow.

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Figure 3.1: Map of registered DonateLife Week events since 2011

 

Source: ANAO analysis.

Note: Of the events hosted in 2011, 260 were not included because location details could not be provided by OTA.

3.60 OTA commissions analysis of DonateLife Weeks, which includes high  level information on media coverage in regional and metropolitan areas by state.  This analysis is post‐event and does not provide information regarding coverage  in specific regional areas. There is scope for OTA to further consider ways to  encourage events in locations where there has been limited coverage to date.  

3.61 Of the 315 registered events in 2014, 110 (or 35 per cent of the total  number  of  events)  were  hosted  by  DonateLife  Network  staff.  Another  30  events were hosted by three community organisation Charter signatories, with  one  organisation  responsible  for  28  of  these  events.  Of  the  remaining  10  community  organisations  which  have  signed  the  Charter,  none  had  a  registered  event  during  DonateLife  Week.  Further,  there  were  no  events  registered  for  any  eye,  tissue  or  bone  banks,  despite  representing  approximately 27 per cent of the organisations listed as Charter signatories.  

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3.62 OTA  advised  the  ANAO  that  not  all  events  during  the  week  are  registered despite OTA encouraging and reminding Charter signatories to do  so.  Nevertheless,  the  limited  number  of  registered  events  conducted  by  Charter signatories in 2014 indicates that there is scope for OTA to encourage  greater participation in future DonateLife Weeks among Charter signatories— now known as partners.88  

3.63 Table 3.5 shows that from 2011 to 2012, DonateLife Week expanded its  reach with an increase in the number of registered events. However, there was  a  large  decrease  in  the  number  of  registered  events  in  2013,  followed  by  another  increase  in  2014.  This  increase  is  attributable  to  two  organisations  which  held  a  combined  total  of  103  events.  One  organisation  was  funded  through  a Community  Awareness  Grant.  Without  the  involvement of  these  two  organisations,  the  number  of  events  in  2014  would  have  been  approximately the same as 2013.  

Table 3.5: DonateLife Week events and coverage

Year No. of

registered events

No. of press, radio, television and online items

Cumulative audience reach Total editorial value

($)

2011 290 1633 41.6 million 11.2 million

2012 346 1580 51.3 million 14.6 million

2013 214 895 39.0 million 18.0 million1

2014 315 1306 28.0 million 10.4 million

Source: ANAO analysis drawing on OTA records.

Note 1: OTA advised that for 2011 and 2012, the national advertising campaign resulted in high media coverage. Further, the large increase in editorial value in 2013 was due to increased levels of coverage on nationally broadcast television.

Strategy for 2014 DonateLife Week

3.64 OTA  includes  an  overarching  strategy  for  DonateLife  Week  in  its  National  Communication  Strategy  and  then  prepares  a  more  detailed  communications plan specifically for the week. For the 2014 DonateLife Week,  OTA identified three objectives: 

                                                      

88 As discussed in paragraph 3.7, OTA introduced the DonateLife Stakeholder Engagement Framework in 2014 to replace the National Communication Framework and Charter. The Stakeholder Engagement Framework outlines a new partner framework.

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 build  on  the  number  and  reach  of  activities  achieved  in  DonateLife  Week 2013; 

 continue the focus towards encouraging and normalising memorable  family discussion of organ and tissue donation; and 

 use the time frame of the week to create a sense of urgency for having  the family discussion about donation wishes. 

3.65 The communications plan largely focussed on media and social media  as well as DonateLife Week launch events. The plan outlined targets for the  frequency  of  use  and  intended  outcomes  for  social  media  channels.  For  example, for its Facebook page, the plan outlined that OTA would make at  least one post a day in the lead up to DonateLife Week and aimed to increase  the number of ‘likes’ for its page by 2000.  

3.66 The  plan  also  indicated  that  OTA  would  contact  key  CALD  communities and the broader health sector to help promote the week. Further,  the  communications  plan  outlined  that  OTA  expected  community  and  corporate supporters to, at a minimum, host an event encouraging people to  discuss their donation wishes with family members. However, the plan did not  include targets for corporate and community supporter activity.  

3.67 Encouraging  greater  participation  among  corporate  and  community  supporters  may  assist  with  generating  additional  media  and  improve  the  audience reach for DonateLife Week, which declined in 2014 when compared  with 2013 (refer to Table 3.5). Further, it may encourage a broader range of  activities which could impact a wider range of people, including people who  are priority groups for OTA and who may not use social media. For example, a  social media research report released in May 2014, reported that 68 per cent of  people  aged  65  years  and  older  and  34 per cent  of  males,  never  use  social  media.89  These  are  both  priority  groups  for  OTA  who  require  engagement  through other communication channels. There is scope for OTA to consider  setting targets in relation to corporate and community supporter activity, in 

the same manner as it does for social media, to focus efforts on increasing the  number and reach of activities among supporters.  

                                                      

89 Sensis Pty Ltd, Yellow Social Media Report [Internet], Sensis Pty Ltd, Melbourne, 2014 [accessed February 2015].

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Measuring the effectiveness of DonateLife Week

3.68 In  its  communication  plan,  OTA  identified  three  mechanisms  to  be  used to evaluate and report the effectiveness of the 2014 DonateLife Week: a  report commissioned by OTA in relation to CALD community engagement; a  survey conducted by OTA of stakeholders; and an independent media analysis  commissioned by OTA. OTA also completes a report outlining the key national  activities and outcomes for DonateLife Week, as well as recommendations for  future DonateLife Weeks. 

3.69 The internal report outlines the results for OTA’s five communication  objectives for the week which were to: 

 generate  high  quality,  positive,  editorial  exposure  nationally  for  DonateLife Week 2014 in line with 2013 results; 

 achieve  consistent  uptake  of  key  messages  and  use  of  the  donatelife.gov.au URL across media coverage; 

 drive  a  positive  community  response  and  increase  traffic  to  the  donatelife.gov.au  website,  and  the  AODR  during  the  course  of  the  DonateLife Week campaign; 

 effectively engage the active participation of the DonateLife Network,  Community  Awareness  Grant  recipients,  DonateLife  Charter  signatories, and corporate and community supporters; and 

 contribute to the delivery of Measure 5 of the National Reform Agenda  to achieve coordinated, ongoing community awareness and education  of organ and tissue donation.  

3.70 Overall, the report stated that the 2014 DonateLife Week was successful  in  meeting  these  objectives,  and  made  32  recommendations  aimed  at:  mainstream, ethnic and social media; the DonateLife website; key activities;  engagement  with  CALD  communities;  sector  and  community  events;  materials; and supporting stakeholders. The report noted that with a limited  budget  and  to  best  utilise  the  DonateLife  Network  staff,  DonateLife  Weeks  should  focus  on  media  and  public  relations  with  a  greater  reliance  on  partnerships for community outreach.  

   

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Information and education resources 3.71 OTA  has  developed  a  range  of  information  resources  aimed  at  educating  the  community  and  increasing  awareness  of  organ  and  tissue  donation. These resources can assist with promoting consistent messages and  dispelling  myths.  OTA  provides  fact  sheets,  a  DonateLife  Toolkit, a  Community Speaker Guide and school curriculum resources on its website.90  

3.72  OTA’s website also includes the Book of Life (the Book) which contains  stories about organ and tissue donors and transplant recipients. OTA advised  the ANAO that while the Book was the primary resource for raising awareness  for DonateLife Weeks in 2011, 2012 and 2013; the ‘Have the Chat’ materials  were the main resources in 2014.91 In 2014, the Book was used at 78 events, a  decline from 189 events in 2013.  

3.73 OTA  has  implemented  an  interactive  version  of  the  Book  on  its  DonateLife website, as well as developing portable volumes of the Book. OTA  has  also  considered  special  editions  of  the  book  aimed  at  priority  groups,  including people aged 65 years or older, young adults aged 18 to 29 years old  and people in rural and regional areas, which have not been developed to date.  

Communication with Culturally and Linguistically Diverse Communities 3.74 A priority under the national DonateLife Community Awareness and  Education  Program  was  communicating  and  engaging  with  CALD  communities in Australia. Developmental research commissioned by OTA in  2010-11 reaffirmed earlier research findings from 2007 that people from CALD  communities were less likely to have held a memorable family discussion on  organ and tissue donation or to have made decisions on becoming organ and  tissue donors.92 

3.75 To guide its engagement with this audience, OTA developed the CALD  Communication and Engagement Strategy 2012-15 (CALD Strategy). The aim  of the strategy is to overcome barriers to discussion and decision‐making about 

                                                      

90 OTA’s website also includes video stories of donor families and transplant recipients, and other multimedia products. 91 These materials included a ‘Have the Chat’ video, printed materials and merchandise. 92 The 2007 research was commissioned by the then Department of Health and Ageing to inform a

communications strategy about organ and tissue donation. It is also referred to in the discussion about the development of the advertising campaign earlier in this Chapter.

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organ  and  tissue  donation  through  the  development  and  distribution  of  culturally appropriate information. OTA engaged a specialist agency93 to assist  in the implementation of the CALD Strategy, which is focused on New South  Wales and Victoria due to the large proportion of religious and cultural leaders  at  a  national  level  who  reside  within  these  states,  as  well  as  the  high  concentration of priority CALD communities.  

3.76 Based on consultation with faith and community leaders, intensivists  and focus groups, OTA is targeting nine priority community groups, owing to  their population size in Australia: Hindu; Muslim; Buddhist; Eastern Orthodox  (focusing on Greek, Serbian and Macedonian communities); Catholic; Jewish;  Antiochian;  Maronite  and  Coptic.  In  addition,  OTA  has  identified  the  following  priority  language  groups:  Arabic;  Chinese;  Greek;  Hindi;  Italian;  Spanish; Turkish; and Vietnamese.  

Approach to engage CALD communities

3.77 Beginning  in  2012,  OTA  met  with  a  large  number  of  faith  and  community  leaders  from  the  priority  communities  to:  provide  information  about organ and tissue donation and the national reform program; encourage  the  leader  to  sign  a  DonateLife  Statement  of  Support  for  organ  and  tissue  donation if appropriate; and discuss opportunities for distributing information  about organ and tissue donation within their networks and communities. As at  March 2015, 70 Statements of Support had been signed and included on the  DonateLife website.94  

3.78 In  2012-13,  in  consultation  with  faith  and  cultural  leaders,  OTA  developed a communication education campaign, ‘DonateLife… the greatest  gift’,  consisting  of  a  suite  of  resources  including  videos,  brochures  and  religious statements of support. In 2013, the ‘DonateLife… the greatest gift’  community  education  campaign  kit  was  distributed  to  over  500  faith  and  cultural organisations and over 250 health‐based organisations in New South  Wales and Victoria.95 The cost associated with the CALD campaign in 2012-13  and 2013-14 was $414 153 and approximately $120 000 more was allocated to  the CALD campaign in 2014-15.  

                                                      

93 This agency was engaged using a government multi-use list. The ANAO did not examine this procurement in detail. 94 There are also six position statements and rulings from different religious and cultural leaders. 95 In 2013-14, over 100 000 CALD resources were distributed to stakeholders, based on agreed

allocations.

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3.79 OTA has also produced the DonateLife‐AODR brochure in 18 languages  and made The Last Race educational film available in eight (subtitled) languages.  To translate the DonateLife‐AODR brochure into 18 languages, OTA received  assistance from the then Department of Immigration and Citizenship.  

3.80 The second wave of the ‘DonateLife… the greatest gift’ campaign is to  develop new fact sheets and video testimonials that address misconceptions  about organ and tissue donation. This process will engage faith and cultural  leaders to ensure the consideration of specific cultural and religious nuances.  Once this resource is developed, it will be made available to faith and cultural  groups  as  part  of  planned  ongoing  engagement  activities,  community  organisation  partnerships  and  through  the  media.  OTA  has  developed  partnerships  with  13  ethnic  media  organisations  to  generate  interest  and  broader awareness within CALD communities, as well as helping to normalise  organ and tissue donation as a topic of conversation.  

Evaluation of the CALD strategy

3.81 A number of performance measures were developed by OTA to assess  the impact of its engagement activities with CALD communities, including the  number of CALD materials distributed at events and the number of meetings  held with faith and cultural leaders. Information has been collected to inform an  evaluation  of  the  implementation  of  the  CALD  strategy,  to  be  finalised  by  mid‐2015.  

3.82 The  DonateLife  Audit96,  which  measures  data  about  organ  donation  within  hospitals,  also  helps  OTA  track  and  measure  the  ethnic  origin  of  potential donors and whether a family’s decision not to consent to donation  was due to faith or cultural factors. 

Indigenous Communities

3.83 The research conducted in 200797, prior to the introduction of the national  reform  program,  identified  that  the  low  rate  of  donation  within  Indigenous communities  requires  particular  attention  as  this  has  an  impact  on  organ  availability. Subsequent  research,  commissioned  by  OTA  and  conducted 

                                                      

96 The DonateLife Hospital Performance Audit (DonateLife Audit) was introduced by OTA in 2009-10. It provides for a nationally consistent method of retrospectively auditing data relating to hospital deaths in the context of organ donation.

97 Refer to paragraph 3.15.

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in 2010-11,  identified  barriers  and  issues  for  consideration  in  engaging  with  Indigenous audiences. Based on this research, OTA determined that engagement  with  Indigenous  communities  should  be  considered  independently  of  CALD  communities. To date, no strategy has been developed. OTA advised the ANAO  that it intends to commence this work in 2015-16.  

Effectiveness of OTA’s Community Awareness and Education Program 3.84 Table 3.6 outlines OTA’s internal performance indicators to measure  the  effectiveness  of  its  Community  Awareness  and  Education  Program,  as  identified  in  its  National  Communication  Strategy  2013-14.  The  results  for  2013 against these indicators are also summarised in Table 3.6.  

Table 3.6: National Community Awareness and Education Program performance indicators

Indicator Target Result for 2013

Australians have had a family discussion about organ and tissue donation1

70 per cent 75 per cent

Australians know their family members’ wishes about organ and tissue donation

68 per cent 53 per cent

Number of Australians who understand the role of family consent

74 per cent 70 per cent

Source: OTA internal document.

Note 1: The family discussion indicator relates to whether families had ever discussed organ and tissue donation. This indicator differs from the family discussion indicator reported in Table 3.3, which measures whether families have discussed organ and tissue donation in the past 12 months. The collection of information on whether families had ever discussed organ and tissue donation only commenced in the sixth wave of tracking research for the advertising campaign (refer Table 3.3). The result recorded as part of the sixth wave of tracking was 77 per cent.

3.85 OTA  advised  the  ANAO  that  its  internal  performance  indicators  were  aspirational, and were based on actual increases reported by tracking research  during  the  initial  Phase  1  advertising  campaign.98 Subsequent  research  undertaken  in  201399  has  indicated  that  this  rate  of  increase  is  unachievable  without an ongoing national advertising campaign, and these indicators are being 

                                                      

98 The campaign is discussed in paragraphs 3.15 to 3.43 of this audit report. 99 This research was part of annual tracking research commissioned by OTA and undertaken by a research agency in 2013.

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reviewed in the context of developing OTA’s National Communications Plan for  2014-18.100 

3.86 While an increase in the number of registrations on the AODR is also a  performance indicator for the program, OTA advised the ANAO that it does  not externally report on the number of registrations as the AODR is managed  by  the  Department  of  Human  Services.  From  30  June  2013  to  30 June 2014,  there was a 1.3 per cent increase (approximately 77 800 registrations) in the  number of AODR registrations. This compares with an increase of 1.6 per cent  (approximately  95 200  registrations)  from  30  June  2012  and  30 June 2013.101  Figure 3.2 shows that the number of Australians registered on the AODR has  increased steadily since the commencement of the reform program. 

Figure 3.2: Number of AODR registrations

 

Source: ANAO analysis.

Note: The Australian Government reform program was announced on 2 July 2008 and endorsed by the Council of Australian Governments on 3 July 2008. OTA was unable to explain why there was a significant decrease in the number of registrations in 2008.

                                                      

100 OTA advised the ANAO that it intends to finalise this plan by the end of 2014-15. OTA also advised the ANAO that the revised indicators will be informed by the national study of donor family experiences and the DonateLife Audit, as well as the OTA’s market research.

101 Department of Human Services, Australian Organ Donor Register (AODR) Historical Statistics [Internet], DHS, available from [accessed 16 March 2015].

5.2

5.3

5.4

5.5

5.6

5.7

5.8

5.9

6.0

6.1

2007 2008 2009 2010 2011 2012 2013 2014

No. of AODR registrations (m)

Year

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Conclusion 3.87 Under Measure 5 of the national reform program, OTA introduced a  National  Community  Awareness  and  Education  Program.  The  program  included an overarching communications framework to encourage consistency  of  messages  within  the  organ  and  tissue  donation  sector  and  provide  stakeholders with access to information and resources. Thirteen community  organisations  which  were  signatories  to  OTA’s  National  Communications  Charter showed high take‐up rates of key elements of the Charter. There is,  however, opportunity for OTA to expand the reach and impact of community  awareness  and  education  efforts  by  more  actively  facilitating  collaboration  between stakeholders through established forums.  

3.88 The largest financial component of the National Community Awareness  and Education Program was a national advertising campaign conducted from  2010 to 2012 at a cost of $13.8 million. OTA adopted an evidence‐based approach  for selecting the message of the campaign which focussed on promoting family  discussion about organ and tissue donation.  

3.89 The  campaign  was  conducted  in  two  phases.  Tracking  research  indicated that while the outcomes for Phase 1 of the campaign tracked above  the three benchmark indicators adopted for the campaign, overall outcomes  for Phase 2 improved only marginally against two indicators and remained  stable against one. Little progress was made with Phase 2 of the campaign to  increase the proportion of people who indicated that they knew their family  members’ wishes—a key driver of the second phase. 

3.90 OTA’s Community Awareness Grants program is another component  of  the  National  Community  Awareness  and Education  Program.  Consistent  with the Commonwealth Grants Rules and Guidelines, for each grant round OTA  issued  publicly  available  guidelines  for  applicants.  However,  OTA’s  administration of the Community Awareness Grants Program demonstrated  some  misalignment  between  the  program  guidelines  and  assessment  processes, and OTA also funded an unsuccessful applicant in a competitive  grant  round  as  part  of  an  unsolicited  application  process.  To  improve  transparency and equity, OTA should review its grants administration with a  particular focus on informing potential grant funding applicants of all sources  of available funding and the assessment process applying to each source.  

3.91 OTA  is  also  responsible  for  leading  and  coordinating  a  national  community  awareness  week  known  as  DonateLife  Week.  OTA  advised  the 

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ANAO that the focus of the week is primarily on media and public relations  which is supported by sector‐driven events as a secondary focus. However,  media analysis commissioned by OTA for the 2014 DonateLife Week indicated  that events have proven to be effective at generating media attention. There is  scope for OTA to encourage a broader geographic reach and range of events,  including greater involvement by non‐government stakeholders, which may  assist in generating additional media interest during future DonateLife Weeks.  Introducing  targets  for  the  level  of  activity  undertaken  by  corporate  and  community supporters, in the same manner as it does for social media, may  assist OTA to focus efforts on increasing the number and reach of activities  among supporters. 

3.92 OTA has developed a range of information resources, including specific  resources  targeted  at  CALD  communities.  OTA  adopted  a  consultative  and  evidence‐based approach to address the identified gap of engaging with CALD  communities.  OTA  intends  to  commence  work  on  a  separate  strategy  for  Indigenous communities in 2014-15.  

3.93 In  2013,  OTA  advised  the  ANAO  that  it  met  the  target  for  one  performance indicator for the National Community Awareness and Education  Program:  Australians  have  had  a  family  discussion  about  organ  and  tissue  donation. It did not meet the targets for the other two indicators: Australians  know  their  family  members’  wishes  about  organ  and  tissue  donation;  and  number  of  Australians  who  understand  the  role  of  family  consent.  OTA  advised the ANAO that these targets have been deemed unachievable in the  absence of another advertising campaign and it is in the process of revising  them. Although OTA does not report on it, Human Services records indicate  that the fourth indicator—to increase the number of AODR registrations—was  also met in 2013.  

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4. Support for Donor Families

This chapter examines the donor family support resources and services funded by OTA.  

Introduction 4.1 The National Donor Family Support Service (NDFSS) was introduced to  implement Measure 6 of the reform program, which focusses on providing a  nationally coordinated approach to the families of deceased donors, including  support which is responsive to the needs of individual families. This measure is  aimed at improving the consistency of support provided to donor families. It is  expected that families of potential organ donors are offered end‐of‐life support,  including  bereavement  counselling,  whether  or  not  the  potential  donation  proceeds.  For  families  who  provide  consent  to  donation,  it  is  expected  that  additional information, ongoing support and contact be provided. 

National Donor Family Support Service 4.2 Support  for  donor  families  is  delivered  through  OTA’s  NDFSS,  introduced  in  2011.  The  NDFSS  is  implemented  through  the  DonateLife  Network, with Donor Family Support Coordinators (DFSC) funded by OTA in  each  state.  The  aim  of  the  NDFSS  is  to  provide  a  tailored  and  nationally  consistent program of support for donor families. From 2009-10 to 2013-14, the  total cost of the NDFSS was approximately $361 000102, which included $119 000  for a national study of donor family experiences during 2010 and 2011.103  

Review of information resources

4.3 To support DFSCs there is a suite of information resources targeted at  donor families and transplant recipients. In 2011, OTA commissioned a review  of  these  resources,  aimed  at:  consolidating  the  materials  developed  by  the  states into a national suite of materials; and determining the most appropriate  timing for providing those materials to donor families. 

4.4 A research agency was engaged to conduct the review, which included a  series of mini‐group discussions and interviews with donor families, support 

                                                      

102 This figure does not include the resource costs of the DonateLife staff. 103 Organ and Tissue Authority, National Study of Family Experiences of Organ and Tissue Donation: Wave 1-2010 and 2011, OTA, 2014, Canberra.

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staff and potential donor families.104 The review made 10 recommendations on  the  content  of  the  materials  tested  and  the  timing  of  providing  the  support  material to donor families. OTA implemented seven of these recommendations,  but did not implement three lower‐order recommendations. OTA advised the  ANAO that it did not consider two of the recommendations necessary, but plans  to implement the third recommendation.  

4.5 Following  the  review, OTA  developed  the  National  Organ  and  Tissue  Donor  Family  Support  Service  Guidelines  (the  support  service  guidelines)  to  define the minimum national standard of support that should be offered to  donor families post‐donation. However, the support service guidelines do not  outline  the  type  of  support  that  donor  families  should  be  provided  in  the 

hospital setting. According to the National Roles and Responsibilities Guidelines,  this  is  the  responsibility  of  the  Donation  Specialist  Coordinator  (DSC).  The  National  Roles  and  Responsibilities  Guidelines  indicate  that  there  should  be  significant  cooperation  between  the  DSC  and  DFSC,  including  working  together to meet the counselling needs of the family and following up with the  family post donation.105 

4.6 While the support service guidelines outline the support which should  be provided to donor families post‐donation, there is scope for OTA to provide  enhanced  guidance  to  the  DonateLife  Network  in  relation  to  the  type  of  information and support which should be provided to donor families in the  hospital setting.  

Contact with families in the hospital setting

4.7 Providing  information  to  potential  donor  families  about  brain  and  circulatory  death  was  recommended  in  the  2011  review.  This  was  because  many  of  the  donor  families  who  participated  in  the  review  remembered  receiving the Understanding Brain Death booklet at the hospital and had either  kept it to review at a later date or to provide it to family members and friends.  Potential donor families also indicated that they thought the brochure would  be useful for family and friends who were not part of face‐to‐face discussions  in the hospital context. 

                                                      

104 Of the donor families, 34 family members from 17 donor families completed surveys for the study. The research agency was engaged following a Request for Quotation process involving three providers. This procurement was not examined in detail by the ANAO. 105 The National Roles and Responsibilities Guidelines, issued by OTA, outline the responsibilities of the

positions within the DonateLife Network.

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4.8 The usefulness of this type of information was observed in the National  Study of Family Experiences of Organ and Tissue Donation conducted in 2013-14  (covering the period 2010 and 2011) by an external agency.106 Both the 2011  review and the national study also found that while written information is  important,  families  still  require  verbal  discussions  about  their  specific  circumstances.  Providing  the  Understanding  Death  and  Donation  brochure,  which has replaced the Understanding Brain Death brochure, to families in the  hospital setting may provide the additional information some families require,  particularly as it includes information about the donation process. Potentially,  it could also be used as a discussion aid for describing the donation process to  families. 

4.9 The  2011  review  also  recommended  that  contact  information  for  the  DonateLife Agency, as well as for relevant bereavement support services, be  provided to families at the hospital. The results of the national donor family  study indicate that the consistency with which contact information is provided  to families could be improved. Thirty‐one per cent of donor family members in  the  study  advised  that  they  did  not  receive  any  information  about  bereavement  support  services  in  their  area,  and  two‐thirds  of  those  family  members  indicated  that  they  would  have  welcomed  receiving  that  information. The study also found that seven per cent of family members were  not offered any ongoing support. Providing contact details for support services  within the hospital setting would assist those families who require access to  services and could act as a prompt for offering ongoing support from DFSCs.  

4.10 Further, in terms of the level of support provided to families in the  hospital setting, the national study found that one‐quarter of donor families  were not offered the support of a social worker, counsellor or chaplain at the  hospital. Further,  the  study  found  that  18 per cent  of  donor  families  had  unanswered questions regarding the donation process or did not understand  the donation process after discussing it with hospital staff.107 The study results  indicate that there is scope to improve the consistency with which families are  offered counselling as well as the type of information they are provided on the 

                                                      

106 Organ and Tissue Authority, National Study of Family Experiences of Organ and Tissue Donation: Wave 1-2010 and 2011, OTA, 2014, Canberra. 107 Included in this figure of 18 per cent are: 16 per cent of survey participants who indicated that they were informed but still had some questions; and two per cent of survey participants who indicated that

they did not have a good understanding of the donation process. The remaining 82 per cent of participants indicated that they were well informed.

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donation  process.  The  National  Roles  and  Responsibilities  Guidelines  and  the  support service guidelines could be revised to outline the type of support and  information that should be provided to donor families in the hospital setting.  

Contact with families post-donation

4.11 DSCs are expected to contact donor families within 24 to 36 hours of the  donation, and DFSCs are expected to contact families two weeks after donation  and six weeks after donation. There is scope for improvement in this area based  on  the  results  of  the  national  study  of  donor  families,  which  found  that  22 per cent  of  family  members  did  not  receive  a  phone  call  from  the  DSC  following donation. Two‐thirds of these family members indicated they would  have liked one.108  

4.12 Of those family members contacted, 94 per cent indicated they found  the contact either extremely helpful or helpful to some extent. Six per cent of  family  members  found  the  contact  unhelpful.  Overall,  14 per cent  of  donor  family members indicated that they did not have enough contact with their  DonateLife Agency, indicating that there is an appetite for additional support. 

4.13 Donor family members indicated that ongoing contact was useful for a  range of reasons, including that it reassured them in their donation decision. A  significant  proportion  of  family  members  (30 per cent)  also  appreciated  the  contact because they learned the outcome of the donation.  

4.14 Transplant  recipients  may  choose  not  to  correspond  with  donor  families for a range of reasons. The support service guidelines indicate that  families  should  be  contacted  within  24  to  36  hours  of  the  donation  to  be  advised  of  the  donation  and  transplantation  outcomes.  Further,  within  two  weeks  of  the  donation,  the  guidelines  require  that  donor  family  support  resources be sent to the family. The template for the letter to accompany the  resources  indicates  that  it  should  include  information  about  the  transplant  recipients, such as their age, gender and the organ or tissue they received.  

4.15 Given the comfort it provides donor families, there would be benefit in  OTA considering whether a process could be established for DFSCs to provide 

                                                      

108 While the support service guidelines indicate that the donor’s family should be contacted within 24 to 36 hours of donation, OTA advised the ANAO that in practice, the primary contact is with the senior next of kin. Respondents to the national study of donor families included both the donor’s senior next of kin and other family members. OTA advised the ANAO that the survey respondents who indicated that they had not been contacted, may have been family members other than the senior next of kin.

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de‐identified information about transplant outcomes in cases where transplant  recipients choose not to correspond with donor families beyond the six weeks  following donation. 

Measuring the effectiveness of the National Donor Family Support Service

4.16 In 2009-10, there was one external indicator for donor family support,  identified  in  the  then  Department  of  Health  and  Ageing’s  Portfolio  Budget  Statement, which was: ‘Nationally consistent support offered to eligible donor  families’. In 2010-11, a second external indicator was added: ‘Enhanced donor  family support provided through the implementation of a nationally agreed  donor family support program.’ These two indicators were discontinued by  OTA in 2012-13 following a directive from the portfolio department, the then  Department of Health and Ageing.109 

4.17 OTA reported on achievement against the indicators in its annual  reports between 2009 and 2012, as outlined in Table 4.1. 

Table 4.1: Performance indicators from 2009-10 to 2011-12

Indicator Target 2009-10 2010-11 2011-12

Percentage of nationally consistent support offered to donor families

100 per cent Met1 Met Met2

Enhanced donor family support provided through the implementation of a nationally agreed Donor Family Support program

Donor families report increasing satisfaction with support services provided according to a national audit

N/A Met Met

Source: ANAO analysis. Note 1: In 2009-10, the target was 100 per cent in the Portfolio Budget Statement and was revised down to 90 per cent during the year. However, in the annual report it was inconsistently reported as 90 per cent and 100 per cent in two separate locations.

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Note 2: The target for this indicator was 100 per cent in the Portfolio Budget Statement. However, when it was reported in the annual report it was incorrectly reported as 95 per cent in one location. In any case, OTA reported it had achieved 100 per cent for the indicator. OTA advised that the target was incorrectly transcribed in the 2011-12 annual report.

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109 The directive was to reduce the number of deliverables and key performance indicators to four for each program. 110

Department of Health and Ageing, Australian Organ and Tissue Donation and Transplantation Authority: Agency Resources and Planned Performance, DoHA, 2009, Canberra, p. 442 and Organ and Tissue Authority, 2009-10 Annual Report, OTA, 2010, Canberra, pp. 33 and 44. 111

ibid., p. 512 and ibid., p. 45.

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4.18 OTA reported in its annual report that in 2009-10, it had fully achieved  the  target  for  providing  nationally  consistent  support  for  donor  families  because all DFSC positions were funded on an acting or permanent basis by  30 June  2010;  a  very  narrow  basis  on  which  to  assess  a  broad  performance  indicator of this kind.  

4.19 In 2010-11 and 2011-12, OTA’s assessment of performance against this  indicator  was  informed  by  the  quarterly  reports  provided  by  the  DonateLife  Agencies, which indicated that all donor families were contacted by the DFSC  and offered support services. However, the ANAO’s review of a sample of these  reports  indicated  that  there  was  insufficient  information  in  those  reports  to  confirm that consistent services had been provided to all donor families. Without  receiving this information from each state and comparing it with the number of  potential and actual donor families for the period, OTA was not well placed to  report that it had fully achieved the target for consistently delivering services. 

4.20 For  the  second  indicator,  relating  to  enhanced  donor  family  support  through the implementation of the NDFSS, OTA reported that the target was  met  in  2010-11  and  2011-12  because  the  family  support  materials  had  been  revised.  However,  the  target  related  specifically  to  levels  of  donor  family  satisfaction with support services, which was not measured in accordance with  the target. Consequently, there was insufficient information available to report  on performance against this indicator and target.  

4.21 No measures have been introduced to assess the NDFSS since these  indicators were discontinued. The national study of donor family experiences  (refer to paragraph 4.8) does however provide a measure of the effectiveness of  the support being provided to families. 

4.22 The  national  study  of  donor  family  experiences  identified  areas  for  improvement in the quality and consistency of services as well as the clarity of  information being provided to donor families. For example, staff in some states  are more consistent in establishing contact with donor families. In one state  36 per cent of donor family members had not been contacted by DonateLife  Network staff since donation, while in another state, all families indicated they  had been contacted by DonateLife Network staff.  

4.23 The Roles and Responsibilities Guidelines include high level performance  measures for the positions within the DonateLife Network, including the DSC  and DFSC. For example, for the DSC, one performance measure is: all families 

provided  with  adequate  support  and  information  throughout  the  donation 

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process as directed by the family. More specific measures may provide OTA  with greater assurance that the support service guidelines are being adhered to  and that families are receiving consistent levels of support across Australia. 

Conclusion 4.24 To provide a tailored and nationally consistent program of support for  donor families, OTA introduced the NDFSS in 2011. To support the DFSCs, who  are  responsible  for  implementing  the  NDFSS,  OTA  revised  a  range  of  information resources for families and developed guidelines on how to provide  donor family support post‐donation. The guidelines could be enhanced to outline  the  type  of  support  that  families  should  be  provided  in  the  hospital  setting.  Further, there is scope to improve the consistency of post‐donation support to  families as indicated by the 2013-14 national study of donor family experiences  (covering the period 2010 and 2011).  

4.25 To  assess  the  effectiveness  of  support  services,  OTA  had  two  performance indicators in place which were discontinued in 2012-13. While  OTA reported these measures as met in its Annual Reports, ANAO analysis  indicated that there was insufficient information to support this result. There  would be benefit in OTA developing internal performance measures to help  assess the effectiveness of the NDFSS, in particular the consistency of services  being provided to families. 

Recommendation No.3 4.26 To improve the services provided to donor families, including those  families  for  which  consent  is  provided  but  donation  does  not  proceed,  the  ANAO recommends that OTA: 

(a) enhance  the  existing  Roles  and  Responsibilities  Guidelines  and  National  Organ  and  Tissue  Donor  Family  Support  Service  Guidelines  to  provide  more  information  about  the  level  of  support  families  should  be  provided in the hospital setting; and 

(b) in  consultation  with  the  state  and  territory  governments,  introduce  internal  performance  measures  to  assess  the  consistency  and  effectiveness of donor family support services. 

OTA’s response 4.27 Part (a):   Agreed. 

Part (b):   Agreed, subject to consultation with state and territory  governments. 

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5. Measurement and Reporting

This  chapter  examines  OTA’s  internal  and  external  reporting,  including  its  key  performance indicators. 

Introduction 5.1 As  part  of  the  national  reform  program,  OTA  is  responsible  for  maintaining  a  national  data  and  reporting  system  capable  of  tracking  implementation of the nine national reform measures endorsed by the Council  of  Australian  Governments  (COAG)  in  2008  and  providing  the  public  with  regular and reliable information about organ and tissue donation in Australia.  The  key  features  of  the  system  were  expected  to  include:  a  new  national  minimum  dataset;  consistent  data  collection;  performance  indicators;  and  appropriate reporting of clinical data at both the national and state level.  

Performance information 5.2 In 2009-10, OTA rolled out a data collection tool to all hospitals within  the DonateLife Network to capture aggregate information at the patient level.  Known as the DonateLife Hospital Performance Audit (DonateLife Audit), the  tool  provides  for  a  nationally  consistent  method  of  retrospectively  auditing  data relating to hospital deaths in the context of organ donation.  

DonateLife Audit

5.3 The data obtained by the DonateLife Audit is used to assess state and  national potential for organ donation, identify missed donation opportunities  and  determine  the  consent  rate  for  organ  donation.  The  DonateLife  Audit  complements  the  Australia  and  New  Zealand  Organ  Donation  (ANZOD)  Registry,  which  records  the  total  number  of  organ  donors,  including  those  outside the DonateLife Network. The DonateLife Audit collects information  from the DonateLife Network that is otherwise not collected by the ANZOD  Registry, such as the number of requests made of potential donors.  

5.4 The DonateLife Audit does not collect data on eye and tissue donation  because of the broad and complex nature of the sector. Instead, this data is  collected by the ANZOD Registry through contributions from the Australian  eye and tissue banks. In 2013-14, OTA worked with the ANZOD Registry to  expand the national tissue dataset and commenced reporting on this dataset in  its 2013 performance report and 2013-14 annual report.  

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5.5 Further,  the  DonateLife  Audit  Report  does  not  currently  report  on  Donation after Circulatory Death (DCD), as OTA is planning to develop an  appropriate definition for this category of reporting in 2015-16.112 OTA advised  the ANAO that no country has yet been able to develop sufficiently accurate  and robust definitions for reporting potential DCD donors. The development  of a definition of the circumstances that will determine a potential DCD donor  will provide greater consistency in capturing information about potential DCD  donors, including the number of potential donors, request rate and consent  rate. By 2017-18, OTA expects to use this information to inform strategies to  increase  the  consent  rate  among  families  whose  family  member  has  had  a  circulatory death.  

5.6 Overall, the DonateLife Audit has provided OTA with information to  assess the effectiveness of its various initiatives including consistency in the  application of the collaborative requesting approach. The information gathered  through the DonateLife Audit can also be used to inform the development and  delivery  of  OTA  initiatives.  For  example,  the  DonateLife  Audit  collects  information on why families may not provide consent for donation, which can  be  used  to  inform  the  FDC  Workshops.  OTA’s  planned  enhancements  will  further  improve  the  usefulness  of  the  information  collected  through  the  DonateLife Audit. 

Potential donor pool

5.7 OTA has included  information about the potential donor pool in its  annual reports (refer to Figure 5.1). The number of potential donors is based on  an extrapolation of the results reported in the September DonateLife Audit and  applied to the actual number of donors as recorded by the ANZOD Registry.113  For example, in the September 2013 DonateLife Audit, the number of potential  DBD donors reported was 385 and of these potential donors, there were 207  actual  donors;  which  was  a  54 per cent  conversion  rate.  OTA  applied  the  54 per cent conversion rate to the actual number of donors recorded by the  ANZOD  Registry  (391)  to  derive  a  potential  donor  pool  of  725,  which  is  reported in the 2013 potential donor pyramid (refer Figure 5.1). 

                                                      

112 Donation after circulatory death (DCD) occurs after circulatory death has been determined on the basis of irreversible cessation of blood circulation. Donation after brain death (DBD) occurs after brain death has been determined on the basis of irreversible cessation of all brain function.

113 The September DonateLife Audit report includes information from January to September for the relevant year.

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Figure 5.1: OTA’s potential donor pyramid for 2012 and 2013

 

Source: OTA, 2012-13 Annual Report, p. 45; and OTA, 2013-14 Annual Report, p. 32.

5.8 OTA’s estimate of potential donors does not include: 

 DCD  donors,  to  the  extent  that  the  conversion  rate  only  includes  Donation after Brain Death (DBD) donors identified in the DonateLife  Audit.  As  discussed  in  paragraph  5.5,  OTA  is  in  the  process  of  developing a methodology for the reporting of information in relation to  DCD donors; and  

 potential donors located outside the DonateLife Network. OTA advised  the  ANAO  that  hospitals  outside  the  DonateLife  Network  have  demonstrated  low  potential  for  donation,  which  argues  against  the  allocation of DonateLife Network staff to these hospitals.114 

                                                      

114 In 2014, 97 per cent of actual donors were from the DonateLife Network and three per cent were from outside the Network.

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5.9 Improving the request and consent rate are key performance indicators  of OTA (refer to paragraphs 5.22 to 5.23). OTA has improved its reporting from  2012 to 2013 by excluding the request rate in the 2013 pyramid, which had led  to discrepancies in its reporting. Previously, there was a difference between the  request rate reported in the pyramid and the request rate reported against the  target key performance indicator in the 2012-13 annual report. The difference  arose  because,  against  the  key  performance  indicator,  OTA  only  reports  on  DBD using the DonateLife Audit data.  

5.10 Enhancing the DonateLife Audit to record DCD would further improve  the  accuracy  of  the  estimated  figures  reported  in  OTA’s  potential  donor  pyramid. However, OTA will not be able to report accurately on the actual  potential donor pool as there will be potential donors outside the DonateLife  Network who are not identified and recorded by the DonateLife Audit.  

Internal reporting 5.11 The performance of each state and territory (state) is monitored by OTA  through  a  standardised  reporting  framework  outlined  in  individual  state  funding  agreements.  DonateLife  Agencies  are  required  to  submit  biannual  progress reports in accordance with a template developed by OTA, reporting on  progress  against  the  nine  reform  measures  and  any  adverse  events.115  The  reports are reviewed by OTA and key issues are discussed with the DonateLife  Agencies.  

5.12 OTA provides monthly reports to the DonateLife Network, as well as  the Advisory Council and the Department of Health, on organ donation and  transplantation performance. The data is collected from the ANZOD Registry,  and  re‐presented  as  trend  information.  OTA  also  provides  the  Australian  Health  Ministers’  Advisory  Council  with  annual  progress  reports  on  implementation of the national reform program. 

External reporting 5.13 Since its establishment, OTA has reported publicly on its progress in  implementing  the  national  reform  program,  as  well  as  broader  measures  associated with organ and tissue donation. Information has been provided in 

                                                      

115 Adverse events can include organs for transplantation lost during transportation, or the transmission of infectious diseases.

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OTA’s annual reports and through a series of biannual performance reports  available on its website.116  

Annual Reports

5.14 OTA published its first annual report in 2008-09, and has published six  in total. In addition to detailing the activities undertaken by the DonateLife  Network  in  delivering  the  national  reforms,  the  annual  reports  include  performance  information  on  the  nine  reform  measures.  The  reports  also  provide trend information, comparison data and information on developments  in  international  organ  and  tissue  donation,  and  Australia’s  potential  donor  population.  

Number of donors

5.15 Since the start of the reform program in 2009, there has been an increase  in  the  number  of  Donation  after  Brain  Death  (DBD)  and  Donation  after  Circulatory Death (DCD) donors, as illustrated in Figure 5.2. In 2014, there was  an overall decrease in the number of donors compared with 2013 from 391 to  378 donors. 

Figure 5.2: Number of donors by DBD and DCD

 

Source: ANAO analysis based on ANZOD Registry information.

Note*: The national reform program was announced by the Australian Government and endorsed by the Council of Australian Governments in 2008. The reform program commenced in 2009.

                                                      

116 OTA, National Performance Data [Internet], OTA, Canberra, 2014, available from http://www.donatelife.gov.au/national-performance-data [accessed October 2014].

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5.16 Measure 1 of the national reform program included the development of  clinical protocols regarding the organ donation process, organ allocation and  waiting  list  management.  In  July  2010,  OTA  assumed  responsibility  for  implementing  a  DCD  clinical  practice  protocol  developed  by  the  National  Health  and  Medical  Research  Council.  In  its  2010-11  annual  report,  OTA  reported that it distributed a national implementation plan to assist the states  to  implement  the  protocol.  OTA  also  advised  the  ANAO  that  it  had  been  working with states to identify opportunities  for increasing the uptake and  consistency  of  DCD  practice.  These  efforts  may  have  contributed  to  the  increase in the number of DCD donors. 

Donors per million population

5.17 Included  in  OTA’s  annual  reports  is  information  about  Australia’s  deceased donor per million population (dpmp) rate. As discussed in Chapter 1,  dpmp  is  a  common  measure,  which  is  also  used  by  OTA  to  compare  performance  across  the  states and to  compare  Australian  performance  with  other countries. 

5.18 Annual national and state indicative dpmp targets have been in place  since  the  beginning  of  2011,  in  line  with  the  findings  of  the  Mid‐Point  Implementation Review Report (refer to paragraphs 1.18 and 1.19). OTA developed  state and national indicative growth trajectories and annual targets to achieve a  national target of 25 dpmp by 2018. States’ performance against annual targets is  reported  internally  through  monthly  data  reports.  The  annual  dpmp  rate  is  reported externally in OTA’s performance reports.  

5.19 As illustrated in Figure 5.3, OTA has reported that up to 2013, there  have been annual increases in Australia’s dpmp since the commencement of  the reform program. In 2014, there was a slight decline in the dpmp rate from  16.9 in 2013 to 16.1 dpmp.  

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Figure 5.3: Australia’s donor per million population

Source: OTA, Performance Report 2014 [Internet], OTA, Canberra, 2014, available from: [accessed February 2015].

5.20 OTA advised the Senate Community Affairs Legislation Committee in  February  2015  that  the  decline  was  partly  attributable  to  the  variability  of  donation outcomes between states and territories. OTA also highlighted a lack  of consistency between states and territories in applying the Family Donation  Conversation  training,  which  OTA  considered  had  adversely  affected  the  family  consent  rate  (refer  to  paragraphs  2.23  to  2.25).  Figure  5.4  illustrates  donor per million population outcomes for states and territories in 2014. 

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Figure 5.4: Donor per million population by state in 2014

 

Source: Derived from: OTA, Performance Report 2014 [Internet], OTA, available from: http://www.donatelife.gov.au/sites/default/files/OTA%202014%20Performance%20Report%20Jan %202015%20FINAL.pdf [accessed March 2015].

Performance framework

5.21 OTA’s  annual  reports  report  against  the  performance  framework  outlined in the Portfolio Budget Statement for the Health Portfolio. In 2013-14,  OTA  had  one  outcome:  ‘Improved  access  to  organ  and  tissue  transplants,  including  through  a  nationally  coordinated  and  consistent  approach  and  system’,  and  one  program:  ‘A  nationally‐coordinated  system  for  organ  and  tissue  donation  for  transplantation’.117  OTA  reported  in  its  2013-14  annual  report  that  it  had  met  the  program’s  four  qualitative  deliverables,  as  summarised in Table 5.1. One of the deliverables, highlighted in grey, relates to  OTA’s community awareness, education and social marketing activities.  

                                                      

117 Department of Health and Ageing, Australian Organ and Tissue Donation and Transplantation Authority: Agency Resources and Planned Performance, Department of Health and Ageing, 2013, Canberra, pp. 351 and 353.

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Table 5.1: Program 1.1: Objectives and qualitative deliverables

Program objective Qualitative deliverable 2013-14

Implement an Organ and Tissue Donation Clinical Governance Framework

Implement the elements of the Clinical Governance Framework in DonateLife hospitals across Australia by 30 June 2014

Met

Integrate the eye and tissue network into the DonateLife Network

Develop a national education program for the eye and tissue sector based on a combination of online and face-to-face learning modules, national practical competencies and a self-paced training module

Met

Raise community awareness and stakeholder engagement across Australia

Conduct community awareness and education activities on organ and tissue donation, in partnership with sector and community organisations

Met

Implement an Electronic Donor Record Implement an Electronic Donor Record Met

Source: 2013-14 Portfolio Budget Statement, Health and Ageing portfolio, p. 354; and Australian Organ and Tissue Donation and Transplantation Authority, 2013-14 Annual Report.

5.22 There  are  two  quantitative  key  performance  indicators  for  the  OTA  program (Program 1.1), which first appeared in the 2012-13 Portfolio Budget  Statement for the then Health and Ageing portfolio:  

 rate  of  request  by  hospital  staff  to  families  for  organ  and  tissue  donation (100 per cent); and  

 rate of family consent to organ and tissue donation (75 per cent).  

5.23 For 2013-14, OTA did not meet these targets, reporting the following  results against the performance indicators:  

 request rate: 96 per cent against a target of 100 per cent; 

 consent rate: 62 per cent against a target of 75 per cent; and 

 conversion rate: 53 per cent against a target of 70 per cent.118 

 

                                                      

118 Even with consent, some donations may not proceed for a variety of clinical reasons. The conversion rate is the proportion of cases where consent has been provided and donation proceeded.

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Performance reports

5.24 OTA  provides  reports  on  its  website  relating  to  performance  in  implementing the national reform program. The reports include information  on  the  number  of  donors,  number  of  transplant  recipients  and  number  of  organs transplanted. The reports have been prepared on a six‐monthly basis  since 2010 and supplementary reports are also prepared on an ad hoc basis.  OTA did not produce a six‐monthly report during 2014, instead publishing an  annual report in January 2015. OTA advised the ANAO that in future it will  only  produce  annual  reports,  and  will  assess  the  need  for  periodic  reports  taking into account agency resources and priorities.  

5.25 The content of reports has varied over time. For example, the family  consent  rate  has  not  been  included  since  the  first  annual  report  in  2010.  However,  additional  information  has  been  included  in  subsequent  reports,  such as information about eye and tissue donation.  

5.26 OTA’s performance reports have not included information about the  number of registrations on the AODR. OTA advised the ANAO that it is not  responsible for administering the AODR and does not report on the register.  Notwithstanding the administrative arrangements for the AODR, the level of  registrations  is  a  relevant  consideration  in  assessing  Australia’s  overall  performance on organ and tissue donation. Further, registering on the AODR  is  now  a  key  message  of  OTA’s  National  Community  Awareness  and  Education Program. Against this background, there would be merit in OTA  reporting on the number of AODR registrations in its performance reports, to  provide a holistic view of the state of play in Australia. 

Conclusion 5.27 Consistent  with  the  national  reform  program,  OTA  introduced  a  national data collection tool known as the DonateLife Audit. It is limited to the  DonateLife  Network  and  does  not  collect  information  about  eye  and  tissue  donation. Further, while the DonateLife Audit reports information on DBD, it  does not report information about DCD. This limits OTA’s capacity to report  on the total number of potential donors, the request rate and the consent rate.  Nevertheless, the DonateLife Audit provides information that can be used to  assess  the  effectiveness  of  OTA’s  various  initiatives,  and  OTA’s  planned  enhancements will further improve the usefulness of the information collected.  

5.28 OTA reports externally on its progress in implementing the national  reform  program.  Indicators  such  as  dpmp  and  number  of  donors  have 

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improved  since  the  commencement  of  the  national  reform  program  but  declined slightly in 2014. Further, OTA is not achieving the targets set for the  program’s  quantitative  performance  indicators.  OTA’s  performance  reports  could  be  improved  by  including  information  on  the  number  of  AODR  registrations  to  provide  a  more  holistic  view  of  the  impact  of  the  national  reform program. 

Ian McPhee 

 

Canberra ACT 

29 April 2015 

 

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Appendices

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Appendix 1: Entity Response

 

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Index

ANAO Better Practice Guide—Successful  Implementation of Policy Initiatives, 58, 60  Australia and New Zealand Organ  Donation (ANZOD) Registry, 7, 24, 83, 

84, 86, 87  Australian Organ and Tissue Donation and  Transplantation Authority Act 2008, 34  Australian Organ Donor Register, 6, 7, 8, 

13, 15, 23, 25, 33, 36, 46, 55, 67, 69, 72, 74,  92, 93 

Book of Life, 68 

Charter signatories, 27, 47, 48, 49, 50, 64, 65,  67  Charter Signatories Committee, 20, 49  Collaborative Requesting Model, 19, 42, 44, 

84 

College of Intensive Care Medicine, 7, 18,  39, 42  Commonwealth grant guidance  Commonwealth Grant Guidelines, 37, 60, 61 

Commonwealth Grants Rules and  Guidelines, 15, 36, 61, 73  Conversion rate, 8, 25, 84, 91 

Deceased donors per million population, 7,  25, 34, 58, 88, 92  Department of Health, 13, 31, 34, 50, 68, 79,  80, 86, 90  Department of Human Services, 13, 15, 23, 

33, 36, 72  Designated requestor model, 8, 19, 44  Discover, Decide and Discuss message, 46  Discuss it today, OK advertising campaign, 

50, 51, 52 

DonateLife Agencies, 8, 14, 15, 20, 23, 24,  35, 43, 47, 49, 60, 61, 63, 80, 86  DonateLife Audit, 9, 24, 44, 57, 58, 59, 70,  72, 83, 84, 85, 86, 92  DonateLife Network, 9, 15, 20, 24, 34, 35, 36, 

39, 41, 43, 44, 45, 55, 63, 64, 67, 75, 76, 81,  83, 85, 86, 87, 91, 92  DonateLife Stakeholder Engagement  Framework, 47, 65  Donation after brain death, 6, 7, 8, 24, 84, 

85, 86, 87, 92  Donation after cardiac death, 6, 7, 24, 84, 85,  86, 87, 88, 92  Donor family consent rate, 8, 24, 25, 43, 45, 

58, 83, 84, 85, 89, 91, 92  Donor family request rate, 9, 24, 25, 84, 86,  91, 92  Donor Family Support Coordinators, 7, 75, 

76, 80, 81 

G  Guidelines on Information and Advertising  Campaigns by Australian Government  Departments and Agencies (March 2010), 

21, 53, 54 

Independent Communications Committee,  7, 54  Informed consent donation model, 13, 33 

National Blood Authority, 34  National Clinical Taskforce on Organ and  Tissue Donation, 13, 31  National Communications Charter, 20, 27, 

46, 47, 48, 49, 50, 64, 65, 67, 73  National Communications Framework, 6,  20, 47, 48  National Donor Family Support Service, 7, 

16, 18, 23, 75, 81, 82 

Index

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National Organ and Tissue Donor Family  Support Service Guidelines, 23, 27, 76, 78,  81, 82  National Roles and Responsibilities Guidelines, 

76, 78  National study of family experiences of organ  and tissue donation  Wave 1-2010 and 2011, 18, 20, 23, 42, 72, 

75, 77, 78, 81 

Priority groups  Culturally and linguistically diverse  communities, 7, 16, 22, 60, 63, 66, 67,  68, 69, 70, 71, 74 

Indigenous communities, 63, 70, 74  People aged 18 to 29 years, 21, 56, 57, 68  People aged over 65 years, 21, 56, 66, 68 

Senate Community Affairs Legislation  Committee, 19, 25, 44, 89 

Unsolicited application process, 17, 21, 62,  73 

 

 

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Series Titles

ANAO Report No.1 2014-15  Confidentiality in Government Contracts: Senate Order for Departmental and Agency  Contracts (Calendar Year 2013 Compliance)  Across Agencies 

ANAO Report No.2 2014-15  Food Security in Remote Indigenous Communities  Department of the Prime Minister and Cabinet 

ANAO Report No.3 2014-15  Fraud Control Arrangements  Across Entities 

ANAO Report No.4 2014-15  Second Follow‐up Audit into the Australian Electoral Commissionʹs Preparation for  and Conduct of Federal Elections  Australian Electoral Commission 

ANAO Report No.5 2014-15  Annual Compliance Arrangements with Large Corporate Taxpayers  Australian Taxation Office 

ANAO Report No.6 2014-15  Business Continuity Management  Across Entities 

ANAO Report No.7 2014-15  Administration of Contact Centres  Australian Taxation Office 

ANAO Report No.8 2014-15  Implementation of Audit Recommendations  Department of Health 

Series Titles

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ANAO Report No.9 2014-15  The Design and Conduct of the Third and Fourth Funding Rounds of the Regional  Development Australia Fund  Department of Infrastructure and Regional Development 

ANAO Report No.10 2014-15  Administration of the Biodiversity Fund Program  Department of the Environment 

ANAO Report No.11 2014-15  The Award of Grants under the Clean Technology Program  Department of Industry 

ANAO Report No.12 2014-15  Diagnostic Imaging Reforms  Department of Health 

ANAO Report No.13 2014-15  Management of the Cape Class Patrol Boat Program  Australian Customs and Border Protection Service 

ANAO Report No.14 2014-15  2013-14 Major Projects Report  Defence Materiel Organisation 

ANAO Report No.15 2014-15  Administration of the Export Market Development Grants Scheme  Australian Trade Commission 

Audit Report No.16 2014-15  Audits of the Financial Statements of Australian Government Entities for the Period  Ended 30 June 2014  Across Entities 

ANAO Report No.17 2014-15  Recruitment and Retention of Specialist Skills for Navy  Department of Defence 

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ANAO Report No.18 2014-15  The Ethanol Production Grants Program  Department of Industry and Science 

ANAO Report No.19 2014-15  Management of the Disposal of Specialist Military Equipment  Department of Defence 

ANAO Report No.20 2014-15  Administration of the Tariff Concession System  Australian Customs and Border Protection Service 

ANAO Report No.21 2014-15  Delivery of Australiaʹs Consular Services  Department of Foreign Affairs and Trade 

ANAO Report No.22 2014-15  Administration of the Indigenous Legal Assistance Programme  Attorney‐General’s Department 

ANAO Report No.23 2014-15  Administration of the Early Years Quality Fund  Department of Education and Training  Department of Finance  Department of the Prime Minister and Cabinet 

ANAO Report No.24 2014-15  Managing Assets and Contracts at Parliament House  Department of Parliamentary Services 

ANAO Report No.25 2014-15  Administration of the Fifth Community Pharmacy Agreement  Department of Health  Department of Human Services  Department of Veterans’ Affairs 

ANAO Report No.26 2014-15  Administration of the Medical Specialist Training Program  Department of Health 

Series Titles

ANAO Report No.33 2014-15

Organ and Tissue Donation: Community Awareness, Professional Education and Family Support

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ANAO Report No.27 2014-15  Electronic Health Records for Defence Personnel  Department of Defence 

ANAO Report No.28 2014-15  Management of Interpreting Services  Department of Immigration and Border Protection  Department of Social Services 

ANAO Report No.29 2014-15  Funding and Management of the Nimmie‐Caira System Enhanced Environmental  Water Delivery Project  Department of the Environment 

ANAO Report No.30 2014-15  Materiel Sustainment Agreements  Department of Defence  Defence Materiel Organisation 

ANAO Report No.31 2014-15  Administration of the Australian Apprenticeships Incentives Program  Department of Education and Training 

ANAO Report No.32 2014-15  Administration of the Fair Entitlements Guarantee  Department of Employment 

ANAO Report No.33 2014-15  Organ and Tissue Donation: Community Awareness, Professional Education and  Family Support  Australian Organ and Tissue Donation and Transplantation Authority 

 

ANAO Report No.33 2014-15 Organ and Tissue Donation: Community Awareness, Professional Education and Family Support

102

Better Practice Guides

The following Better Practice Guides are available on the ANAO website: 

Public Sector Financial Statements: High‐quality reporting through  good governance and processes  Mar. 2015 

Public Sector Audit Committees: Independent assurance and advice for  Accountable Authorities  Mar. 2015 

Successful Implementation of Policy Initiatives  Oct. 2014 

Public Sector Governance: Strengthening performance through good  governance  June 2014 

Administering Regulation: Achieving the right balance  June 2014 

Implementing Better Practice Grants Administration  Dec. 2013 

Human Resource Management Information Systems: Risks and  Controls  June 2013 

Public Sector Internal Audit: An Investment in Assurance and Business  Improvement  Sept. 2012 

Public Sector Environmental Management: Reducing the Environmental  Impacts of Public Sector Operations  Apr. 2012 

Developing and Managing Contracts: Getting the Right Outcome,  Achieving Value for Money  Feb. 2012 

Fraud Control in Australian Government Entities  Mar. 2011 

Strategic and Operational Management of Assets by Public Sector  Entities: Delivering Agreed Outcomes through an Efficient and  Optimal Asset Base 

Sept. 2010 

Planning and Approving Projects - an Executive Perspective: Setting the  Foundation for Results  June 2010 

Innovation in the Public Sector: Enabling Better Performance, Driving  New Directions  Dec. 2009 

SAP ECC 6.0: Security and Control  June 2009 

Business Continuity Management: Building Resilience in Public Sector  Entities  June 2009 

Developing and Managing Internal Budgets  June 2008