The major role of the organ Advisory groups is to advise NHSBT to help promote all aspects of organ transplantation and ensure equity of access and best outcomes for all patients.
- Appointment: applications will be invited from transplant health care professionals and the Chair will be appointed by NHSBT after consultation with the relevant Advisory Group.
- Tenure: The Chair will be appointed for 3 years in the first instance, with the possibility of renewal for a subsequent term. Remuneration: The Chair will receive from NHSBT a Special Duty Payment.
- Support: The Chair, and the Advisory group, will have defined administrative and statistical support from NHSBT to help deliver the aims of the group.
- Appraisal: the Chair will meet the Associate Medical Director for Organ Donation and Transplantation every year for a formal review of progress made, to agree targets for future work and a work plan.
Membership of the Advisory Group will vary between the groups but will typically include:
- Voting members:
- Representation from each designated transplant centre or group of centres One representative for paediatric recipients (where appropriate)
- Non-voting members:
- Representative from NCG/commissioning groups
- Representatives from the national Departments of Health
- Director of Organ Donation and Transplantation (ODT)
- Associate Medical Director ODT
- Associate Director of Statistics and Clinical Studies
- Director of Donor Care & Co-ordination
- Clinical Leads for Retrieval and for Donation
Other members co-opted by the Advisory group (may include representatives from relevant professional bodies, societies and Colleges) The Chair, in discussion with members of the Group, will include other appropriate members.
Representatives from the Republic of Ireland will be welcome.
Members will be responsible for bringing to the Advisory Group any relevant concerns or suggestions from the centres they represent: where possible this should be in writing so that the paper can be circulated prior to the meeting. Members are also responsible for circulating minutes and other discussion items and items of relevance within their organisations (to clinicians, managers and other relevant parties).
Members of the Group will also be responsible for responding to relevant items on the Agenda brought forward by the Chair or Associate Medical Director.
Deputy Chair: the Advisory Group will agree a Deputy Chair who will assume the role and duties of the Chair when the Chair is unavailable, when there are possible conflicts of interest or at the request of the Chair.
The representative(s) from each centre will be determined by the Centre Director who will also agree the tenure for each representative’s membership. Voting:
If an agreement cannot be reached by consensus, a vote will be taken: a majority will be binding.
The Chair will have a casting vote but will not take part in the initial vote. Frequency of meetings The Advisory Group will meet at least twice a year at a venue to be agreed. Sub-groups
It is anticipated that the Advisory Groups will have sub-groups to address specific aspects of transplantation or issues; the nature, membership, frequency, life time and venue of these meetings will be at the discretion of the Advisory Group.
The Advisory Group will appoint a sub-group which will be responsible, to the Advisory Group and to ODT, for assessing applications for data that is held by ODT: the sub-group should assess the scientific validity of the request, the analytical methodology, the output and ensure that all interested parties are in support of the application and are recognised in any output (such as an abstract or manuscript); the sub-group should also indicate the priority of each application so that the Associate Director of Statistics and Clinical Audit can prioritise the available resources.
These sub-groups will report formally to the Advisory Group.
It is recommended that Advisory groups will consider holding open meetings where there will be a wider representation of the transplant community. The Chair, together with the Associate Medical Director, will meet, at least annually, with relevant, interested parties, including patient representative bodies, patient groups and disease-specific patient bodies.
The minutes of each meeting will be taken by the NHSBT (ODT) Secretariat.
The minutes and all papers of the Advisory Group meetings that could be requested under the Freedom of Information Act will be published (when approved) on the NHSBT web-site, unless they contain patient - identifiable material.
Minutes will be circulated electronically.
The groups will be allocated an agreed budget, administered by NHSBT, which will include travel expenses, hosting of meetings, working parties, consensus meetings and other relevant activities. Accountability for the budget will be with the Chair of the Group but the budget will be held within ODT.
Statistical and analytical support
Each Advisory group will be allocated an agreed level of support from the Directorate of Statistics and Clinical Audit to support the activities of the group: this support will be used for analysis of outcomes, audit, governance issues, service evaluation, modelling of alternative methods of service delivery and other projects, agreed with the Chair of the Advisory Group, the Associate Director of Statistics and Clinical Audit and the Associate Medical Director ODT.
The Chair of the Group, Associate Director of Statistics and Clinical Audit and Associate Medical Director will meet at least every 6 months to agree the agenda, new projects and assign priorities.
The Corporate Services section of ODT will provide an agreed level of administrative support, to help with the planning and organisation of meetings, minute taking and other relevant matters.
Role of Advisory group
The Advisory Group will:
- consider formally at each 6-monthly meeting and advise NHSBT on operational aspects of transplantation including:
- organ retrieval
- recipient selection criteria
- methods of organ allocation
- data analysis with respect to activity and outcome. recommend, as necessary, promote and implement changes to the nationallyagreed protocols
- advise NHSBT and other bodies on appropriate methods of monitoring outcomes and interpretation of findings
- monitor and report on clinical governance with especial reference to outcomes and deviations from expected outcome
- deviation from agreed protocols in selection and/or allocation
- equity of access of patients to transplantation throughout the UK evaluation and comments on issues raised by investigations into triggers from outcomes analysis, investigations and other issues
- identify and promote areas of audit and research
- remit to ODT matters of practice or policy that require consideration within a broader framework.
- liaise as necessary with the British Transplantation Society and other professional bodies in the development of national standards
- Provide 6 monthly reports of clinical governance
- Respond to and advise on or implement aspects of donation and transplant policy that arise from legal and/or policy developments both within the UK and more widely.
Consideration of selection and allocation will require clarification of the aims of the processes, proposals to measure the outcomes and regular audit to ensure the criteria are followed and adjusted as indicated.
Protocols and policies agreed by the Advisory Groups will need ratification by the Board of NHSBT, prior to implementation.
Equity (in the context of this document) implies that a potential recipient anywhere in the UK will have the same likelihood of being placed on the transplant list and a patient on the transplant list has the same probability of receiving a graft, wherever in the UK he/she resides and at whichever transplant centre the patient is registered. The chance of death and/or removal from the list is irrespective of location and the outcome after transplantation (both short and long-term) will not be affected by centre.
The Advisory Groups will identify areas where new or revised national guidelines relating to transplantation are needed; where appropriate, NHSBT will then commission the appropriate professional body to develop the guidelines and, if adopted, these guidelines will be endorsed by NHSBT. These guidelines must be patient, rather than Centre, focused and consistent with all current national legislation.