The James Lind Alliance Process.


Topics for research in kidney transplantation are normally dictated by the interests of researchers in universities and the pharmaceutical industry. This often overlooks the shared priorities of patients, carers and clinicians. The James Lind Alliance process brings patient, carer and clinician groups together on an equal footing to:

  • Identify treatment uncertainties which are important to them
  • Work with both groups jointly to prioritise the uncertainties
  • Produce a priority list of jointly agreed uncertainties as research questions to be presented to funders

This methodology has been tried and tested in a number of previous partnerships, and is well respected. Throughout the process, the James Lind Alliance will participate as an advisor, to ensure accountability and transparency.

Steps in the process

There are six main stages to the prioritisation process, each of which involves patients and clinicians working together. The stages are described in detail below; click on a step to read more.

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.


Below is a summary of the projected timeline for the kidney transplant PSP. A more detailed version can be found in the steering group terms of reference.

  • Register the PSP with James Lind Alliance

    October-November 2013

    The draft topic for the kdiney transplant PSP has been accepted onto the JLA portfolio, and Leanne Metcalf has been appointed as the JLA advisor.

  • Assemble steering group

    December 2013 - Jan 2014

    A steering group for the PSP has been assembled, including representatives from key national patient and clinician organisations with an interest in kidney transplantation.

  • Inaugural Steering Group meeting

    19th May 2014

    The first steering group meeting was held on the 19th May at the Royal College of Surgeons of England, London.

    Full minutes from the meeting can be downloaded below.

     Minutes of the 1st Steering Group Meeting  London, 19th May 2014
  • Design Pilot Survey

    July 2014 - September 2014

    Design and pilot of the initial survey to collect treatment uncertainties is complete.

  • First Survey Open

    October - December 2014

    The initial survey to collect treatment uncertainties from patients, carers and clinicians, is complete.

  • Refine uncertainties

    January 2014 - September 2015

    Uncertainties from the first survey are categorised and refined ready for the prioritisation process.

  • Prioritisation survey open

    9th October 2015

    The second survey, asking patients, careres and clinicians to prioritise treatment uncertainties will be open for a 2 month period.

  • Final prioritisation workshop

    3rd February 2015

    The results of the prioritisation survey will be used as part of a one-day workshop with representatives from partner organisations, in order to decide a final list of prioritised uncertainties.

  • Publication and dissemination

    February-March 2016

    The results of the PSP will be published and publicised via our partner organisations, and provided to research funders.