Defining future research priorities: results of the UK Kidney Transplant Priority Setting Partnership
INTRODUCTION: Research agendas in kidney transplantation are often driven by the interests of individual researchers and/or of the pharmaceutical industry. This often overlooks the priorities of patients, carers and clinicians. The James Lind Alliance Kidney Transplant Priority Setting Partnership (PSP) was established with the aim of involving all stakeholders in identifying and prioritising future research in the field. METHODS: The PSP methodology is as outlined by the James Lind Alliance: (1) A steering group, coordinated by the Centre for Evidence in Transplantation (CET), was convened to include representation from all key national professional and patient bodies involved in the care of kidney transplant recipients and living kidney donors. (2) Partner organisations (both local and national) with an interest in Kidney Transplantation were invited to contribute to and help publicise the process. (3) An initial survey collected treatment uncertainties (unanswered research questions) from a mixture of patients, carers and clinicians, which were added to those identified from surveys conducted previously by partner organisations. (4) Survey responses were refined to remove duplicate and out-of-scope topics, and the existing literature searched to identify and exclude topics already answered by current evidence. (5) An interim prioritisation survey asked patients and professionals to score the importance of the remaining uncertainties to create a ranked long-list. (6) A final workshop will identify the top ten priorities for future research from the top 25 ranked in the prioritisation survey. RESULTS: The process included over 20 partner organisations representing both patients and clinicians, including professional organisations, charities and patient groups. The initial survey identified 497 uncertainties. 132 were deemed out-of-scope and excluded. The remaining 365 were categorized and grouped into 97 “indicative” uncertainties. Seven of these were considered to be answered by the existing literature and excluded. Of the remaining 90, 45 were submitted by more than two respondents and were taken forward to the prioritisation survey. The interim prioritisation survey received 256 responses (34.0% patients/carers, 10.5% donors and 55.5% professionals) to produce a ranked long-list. 30 professionals, patients, donors and carers will be taking part in a final consensus workshop on 3rd February 2016 in order to agree a top ten research priorities from this list. CONCLUSIONS: This project uniquely brings together patients and clinicians to prioritise future research in kidney transplantation. The results of the final workshop on the 3rd February will provide a top ten list of prioritised research questions in kidney transplant, agreed by patients and professionals, which will help researchers and funders target their activities. These results will be available for presentation at Kidney Week 2016.