The James Lind Alliance Process.

A steering group is required to coordinate the Priority Setting Partnership and organise its activities. This process will be led by staff from the Centre for Evidence in Transplantation , supported by an advisor from the James Lind Alliance. Other members for the steering group will be approached from within key partner organisations, and will include clinicians and patients.

The steering group will be asked to commit to all stages of the PSP process, using their established contacts and networks to publicise the process and its findings.

The first step of the process is to identify potential partner organisations for involvement in the PSP. These organisations may represent clinical groups, patients and their families/carers and charities with an interest in kidney transplantation.

It is important that all the organisations that can reach and advocate for patients, carers and clinicians should be invited to become involved in the Priority Setting Partnership. As far as possible, the numbers involved should represent patients and clinicians equally. This will help the Kidney Transplant PSP to demonstrate this exercise was unique and transparent, and the agreement of the priorities fair.

Registering as a partner organisation is free and quick to do – it means that your organisation will receive updates on the progress of the partnership and be invited to take part in the following:

• Respond to a questionnaire survey which gives you the opportunity to tell us your thoughts about the unanswered questions in kidney transplantation
• Cast your votes on the unanswered questions in kidney transplantation that you think are the most important
• Be asked to contribute to a final priority setting workshop

Once established, the partnership will open an initial survey for 3 months to request questions and uncertainties of practical clinical importance in the field of kidney transplantation. The questions gathered will relate to all aspects of the scope of the PSP.

We will also feed in potential uncertainties identified from previous work conducted by our parnter organisations or elsewhere.

The methods used will be as transparent, inclusive and representative as practicable. Methods will include membership meetings, email consultation, postal or web-based questionnaires, internet message boards and focus group work.

The consultation process will produce “raw” unanswered questions from survey respondents. These will have to be refined into questions that researchers can use:

1. Staff based at the Centre for Evidence in Transplantation will assemble the “raw” unanswered questions, categorise and refine them. They will be refined into “collated indicative questions” which are clear questions addressable by research and understandable to all.
2. The CET staff will review the existing research literature to see to what extent these refined questions have, or have not, been answered by previous research.
3. The questions which have not been adequately addressed by previous research will be collated. We will enter these into a Kidney Transplant section within the UK Database of Uncertainties about the Effects of Treatments (UK DUETs).

The aim of this final stage of the priority setting process is to prioritise through consensus the identified uncertainties. This will be carried out by members of the Steering Group and the wider partnership that represents patients, carers, clinicians and health and social care professionals.

In the interim stage we will proceed from a long list of uncertainties to a shorter list (e.g. up to 20). This may be carried by an online survey where the organisations consult their membership and choose and rank their most important uncertainties.

The final stage, to reach a shortlist of prioritised uncertainties to present to the research community, is likely to be conducted in a face-to-face meeting, using group discussions and plenary sessions. The James Lind Alliance will facilitate this and ensure fairness.

It is anticipated that the findings of the Kidney Transplantation Priority Setting Partnership will feed directly into the research strategies or agendas of the funding and supporting partners.

They will also be reported to funding and research agenda setting organisations such as the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC) as well as the major research funding charities.

As well as alerting potential funders, partners and Steering Group members are encouraged to publish the findings of the Kidney Transplantation Priority Setting Partnership using both internal and external communication mechanisms. The James Lind Alliance may also capture and publicise the results, through descriptive reports of the process itself.