National Reform Package - Project Update 4
Measure 1 A new national approach and system: A national Authority and network of organ and tissue donation agencies
DonateLife Portal
The DonateLife Portal (formerly known as the National Organ Donation Collaborative (NODC) Portal) has now been completely transitioned from the National Health and Medical Research Council (NHMRC) to the Organ and Tissue Authority.
The DonateLife Portal hosts a significant collection of resources and enables secure data entry and reporting for hospitals on realised and unrealised organ donation opportunities. The portal is hosted on a secure server in order to protect the information entered and stored on the portal. Data entry and reporting access is restricted to a small group of users, each of who is only able to access information about their own hospital.
The portal also offers access to the latest international news and research related to organ and tissue donation and provides an online meeting point for the sharing of tools and resources.Work has now commenced on identifying a range of enhancements to improve the data capture and reporting capabilities of the portal.
The first round of these enhancements is expected to be completed before the end of January 2010. Following the release of these enhancements, work will commence on identifying other improvements to ensure the portal continues to remain an effective support tool for the DonateLife Network.
Access to the portal is available to the DonateLife Network, as well as policy makers and relevant professional colleges.
To request access to the portal or for more information about the resources available via the portal, please email Alina Tooley, COP Manager: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Hospital Based Audit Data Capture
Data collection for the current period is well underway with data being captured according to the agreed national dataset.
The Authority will liaise with jurisdictions to obtain total monthly data to support reporting for the current audit period.
Work has now commenced on refining and testing a newly developed data capture tool that will be used for the audit period commencing on 1 January 2010.
This tool is more user-friendly, provides greater guidance during data entry, allows more in-depth data analysis and is a step toward the future web-based tool.
The Organ Donation Audit Guide will be modified to reflect this new tool and the DonateLife Portal will be modified to accept total monthly data according to the data elements in this tool. Each hospital senior nurse responsible for the audit will enter these monthly totals directly into the secure section of DonateLife Portal.
Electronic Donor Record (DONORtrak)
DONORtrak customisation and development is well under way and on schedule for the initial trial period in early 2010.
The development is primarily to create user group access controls, printing templates and Australian and New ZealandOrgan Donation Registry (ANZOD) data transfer and the customisation will involve branding and design to reflect the new DonateLife network.
Database security issues regarding the collection, storage and transmission of confidential information have been addressed with DONORtrak data base now hosted within an I-RAP certified environment and Secure Socket Layer (SSL)certification established.
User acceptance testing (UAT) to verify whetherDONORtrak will function successfully in the business environment and meetuser expectations is expected to be completed in early 2010.
Donor Coordinators, Transplant Coordinators, Transplant Specialists and non-clinical personnel have been recruited to facilitate the UAT and information and training sessions have commenced to ensure the success of this process.
The following hospitals will be involved with the initial trial and preliminary discussions have begun with the relevant personnel within these hospitals to work towards the initial system trial:
- Royal Perth Hospital
- The Alfred Hospital
- Princess Alexandra Hospital
- John Hunter Hospital
- Royal Adelaide Hospital
Electronic devices have been selected and will be provided to the Organ and Tissue Agencies (OTDA)’s for Donor Coordinators to use in conjunction with DONORtrak during the trial.
Donor Coordinators will participate in device evaluation to ensure the most suitable and appropriate device is identified for web-based data entry.
Finally, networks and links have been established with clinical leaders within the National E-Health Transition Authorityand the office of the Chief Information Officer within jurisdictional Departments of Health to engage support, advice and assistance in the successful implementation of this electronic offer system.
National Clinical Information System (NCIS)
The NCIS will establish a national framework for the various datasets and data sources, to allow for advanced data interrogation and reporting for organ and tissue donation and transplantation outcomes, activities and related functions.
The NCIS working group, chaired by Professor Jeremy Chapman has been established and met for the second time on 2 December 2009.
They are now planning a 1 day workshop to gain a greater understanding of the various registries in the sector. Each of the registries will deliver a presentation on their particular registry.
In parallel with this, work has commenced on the mapping of the data collection and reporting activities of the registries.
Measure 2 Specialist hospital staff and systems dedicated to organ donation
As part of measure 2 of the National Reform Agenda, dedicated organ donation hospital staff have been employed in 75 hospitals across all States and Territories. The roles of the hospital based staff include:
- Hospital-based Medical Directors of Organ and Tissue Donation. These positions lead and drive the local level. They are responsible and accountable for the process of organ and tissue donation within their hospital.
- Senior Nurses of Organ and Tissue Donation who work closely with the hospital-based Medical Directors, particularly on vital education and awareness-raising.
The DonateLife Network is supported by the Community of Practice (CoP) Program. The CoP allows the DonateLife Network to share information, built on existing knowledge, develop expertise and solve problems.
The CoP will have a number of supporting events and tools to allow this sharing of information. There will be a National Meeting of all State Medical Directors, Hospital Based Staff, DonateLife Agency staff and staff from the Authority on the 4th and 5th of March 2010. The purpose of this meeting is to bring the DonateLife Network together to share learning and experience and provide an education and training opportunity to allow the clinical staff to implement the Authority’s reform agenda. There are also monthly Webinars and Journal Clubs to support the DonateLife Network.
Clinical Trigger
Implementation of the GIVE protocol, the National Clinical Trigger in hospitals with DonateLife Network clinical staff is well underway. A number of information/training sessions have been held in Emergency Departments and Intensive Care Units around the country. A webinar on the GIVE protocol involving the DonateLife Network is scheduled for January 2010.
The Clinical Trigger information has been disseminated to the peak professional bodies and large private hospitals agencies seeking their assistance in implementing the GIVE protocol.
The Authority will begin to monitor the use of the protocol in April 2010.
Measure 3 New funding for hospitals
As part of the Commonwealth Government World’s Best Practice Reform on Organ and Tissue Donation and Transplantation, additional funding to the amount of $17.1 million has been made available to eligible public and private hospitals. The funding has been introduced to contribute to the additional costs associated with organ donation activity, and to ensure that costs are not a factor in determining whether organ donation proceeds.
The Authority will administer the funding which will be allocated retrospectively on a quarterly basis, with funding for the first and second quarters of the current financial year being based on actual donors. The Authority is in the process of finalising arrangements to support the transfer of payments from the Authority directly to hospitals and is also preparing a range of support tools and information to ensure a simple and easy to follow process for hospitals to submit claims for activity based funding. Following noting of the Activity Based Funding Model by the Australian Minister’s Advisory Council (AHMAC), hospitals who had at least one organ donor during the first period 1 July 2009 – 30 September 2009 will be contacted by the Authority to progress the payment of first quarter funding.
Measure 4 National professional awareness and education
The Authority is developing nationally consistent and targeted education programs for professional staff in the organ and tissue donation sector. These programs are designed to enhance the skills, qualifications and donation related capabilities of health professionals working to improve Australia’s organ and tissue donation and transplantation rates.
Programs are being developed in consultation with the relevant stakeholders and build upon existing programs.
The National Orientation and Induction Program for new hospital based staff has commenced with sessions held in Brisbane, Adelaide, Sydney, Melbourne and Perth.
The Education Working Group chaired by Dr Sally Tideman, State Medical Director of South Australia, recently completed a survey identifying education and services provided to the DonateLife Network and broader clinical community by the OTDA’s. The working group is now identifying core content for education resources and engagement strategies for communicating with the sector.
Work is progressing on the development of educational competency packages and a post graduate program for the DonateLife Network.
Measure 5 Coordinated, ongoing community awareness and education
Building on previous sector media activity around organ and tissue donation and New Year’s Eve, the Authority leveragedmedia and public relations opportunities over the New Year period to promote the importance of discussing organ and tissue donation.
The focus of the messaging was to encourage Australian families to Discover, Decide and Discuss organ and tissue donation and to know, accept and respect each other’s wishes. As a call-to-action, Australian families were asked to make becoming a DonateLife Family part of their new year resolutions, by knowing and committing to uphold each other’s wishes regarding organ and tissue donation.
The Authority engaged a public relations agency to facilitate media activity including issuing national and regional media releases with findings from a resent Australia-wide survey on family discussion. The media releases are available on theDonateLife website.
The Authority also extended its outdoor activity over December/January through the use of previously committed media, and outdoor billboards with the DonateLife message has appeared in all major capital cities.
The Authority was also a sponsor of the City of Sydney New Year’s Eve celebrations, which included logo placement on event assets and projection of the logo Pylons of the Sydney Harbour Bridge. ‘Discover, Decide, Discuss’ information brochures were also be available at public booths.
A unique animation presentation was created to support the new year resolution call to action. The presentation was distributed around the sector and community organisations via email and it features on the DonateLife website.
All communications materials direct people to the DonateLife website to find out more information about organ and tissue donation.
Australian Organ Donor Awareness Week
The Authority is leading communications activities for Australian Organ Donor Awareness week between 21 and 28 February 2010. A working group has been established including representatives from DonateLife agencies, communityorganisations and Medicare.
The theme will again focus on encouraging Australians to discuss their wishes with their family to ensure their family know and commit to their wishes.
The Authority will also be coordinating all sector events and activities to ensure that all messaging is consistent and aligned, and community organisations will be encouraged to include the DonateLife website on all communications materials.
A range of promotional merchandise and educational material is being produced to be made available to the sector and all organisations involved in the week’s events.
The Authority is finalising its plans to commence national advertising as part of the three year community awareness andeducation campaign immediately following Australian Organ Donor Awareness Week.
Measure 6 Support for donor families
The Authority is developing and funding a new nationally coordinated and consistent approach to support donor families through the National Donor Family Support Program. The program will provide emotional support and counselling as required for all organ and/or tissue donor families who have consented to donation. The program comprises staff, resources and services to support donor families before, during and after donation. Donor families can expect consistent levels of support through the program’s minimum national standards of donor family support across Australia.
A Community Consultation Workshop was held by the Authority on 30 November 2009 to obtain seek feedback and input into the development of the National Donor Family Support Program. This included feedback on the emotional support required by donor families before, during and after donation and the role of support staff. The workshop was attended by 30 participants including donor families, community members and consumer representatives, donor coordinators and social workers.
The workshop was valuable in identifying the level of support to be provided to families, especially after donation.
Draft recommendations and a draft framework for the national program have been developed, providing for a nationally consistent model through which donor families can be offered best practice emotional support, including counselling if required. The recommendations and framework were drafted in conjunction with both the Donor Family Support Working Group and participants at the Community Consultation Workshop. The Working Group is chaired by Dr Kevin Yuen, DonateLife State Medical Director of Western Australia.
The draft recommendations and framework were discussed at a Donor Family Support Working Group meeting, held on 7 December 2009, and chaired by Dr Kevin Yuen. The draft recommendations and framework will be provided to the Authority following a review by all DonateLife State Medical Directors which will take place in early 2010.
Measure 7 Safe, equitable and transparent national transplantation processes
The Transplantation Society of Australia and New Zealand (TSANZ) is developing a National Protocol for Organ Transplantation Eligibility and Allocation Criteria for the Authority. The draft national protocol is expected to be completed bymid-February 2010 and a second consultation forum is planned for late March 2010.
The Authority is working closely with TSANZ project staff to assist in the completion of this project. Transport Following an invitation from the TSANZ/ATCA Donor Surgeon and Coordinators Standing Committee, the Authority has undertaken toprovide a National Protocol for Organ Preservation and Transport based on the advice of this committee.
The first phase of this project is the establishment of transport arrangements for the Australian Paired Kidney Exchange (AKX) Program. In consultation with relevant stakeholders, this phase has now commenced. A business case for the appointment of a transport carrier has been finalised and approved by the National Program Delivery Manager and procurement processes are now underway to appoint a national carrier for the transport of kidneys under the AKX Program.
Following the appointment of a national carrier, a mock organ transit operation will occur to test the transportation systems in place prior to the first true kidney transport for the AKX Program.
Further, work is underway to develop a National Organ Transport and Packaging Protocol that will provide standard guidelines for jurisdictions participating in the AKX Program.
A development process is also in progress to plan other components of the wider national transport project. This will occur in consultation with the Health Sector and will incorporate an evaluation of current transport practices in Australia.
Measure 8 National Eye & Tissue Donation & Transplantation Network
The development of a National Eye and Tissue Donation and Transplantation Network is a key measure in achieving a world’s best practice approach to organ and tissue donation for Australia. A scoping paper, investigating this initiative, was commissioned and drafted by Health Outcomes International (HOI).
The final report was received by the Authority in late October 2009.
The Chief Executive Officer has sought advice from the Advisory Council in relation to the recommendations provided in the report and a strategy for engagement for jurisdictions and the sector has been formulated.
Measure 9 Other National Initiatives
Australian Paired Kidney Exchange Work is progressing on the Australian Paired Kidney Exchange Program (AKX).
Requirements for the National Organ Matching Service (NOMS) software to match donor and recipient pairs has been signed off and is ready for the first match run in January 2010.
Communication with clinical stakeholders has been ongoing and information about the program and how to enrol participants was sent to Heads of Transplant Units, Nephrologists and Transplant Coordinators across Australia in earlyDecember.
AKX Program Director, Professor Paolo Ferrari, met with clinicians in Victoria and New South Wales in the November 2009 and South Australia and Queensland to outline the process for AKX, including how to enrol participants.
The Authority will be appointing a Coordinating Tissue Typing Officer as well as a single national carrier for the Program.
The AKX Program remains on track to be operational in early 2010 with the first match run planned for January 2010 and the first AKX surgery planned for February 2010.
