Defining Priorities for Future Research: Results of the UK Kidney Transplant Priority Setting Partnership

Knight et al. (2016) full text summary PDF

For which topic were research priorities identified?

kidney transplants

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

It is perhaps not surprising that the field of kidney transplantation has a very active research community. The research agenda has typically been set by individual researchers or industry, with over one third of randomised controlled trials in transplantation receiving industry funding. It has been suggested in other areas of health research that the research priorities of these groups may differ from those of end service users such as patients, carers and healthcare professionals involved in day-to-day care. Increasing recognition of a potential mismatch between the priorities of end service users and researchers/funders has led to a drive towards involving healthcare professionals, patients and carers in projects identifying and prioritising topics for research.

What was the objective?

to identify unanswered research questions in the field of kidney transplantation from end service users and to prioritize these questions according to the needs of these groups, for use in future decision-making by funders and researchers

What was the outcome?

a ranking list of 10 research questions

How long did the research prioritization take?

October 2014 - February 2016

Which methods were used to identify research priorities?

JLA method

How were the priorities for research identified exactly?

Step 1: setting up PSP, steering group defined scope of the project. Step 2: collecting uncertainties: via survey, participants were asked: What unanswered questions about kidney transplantation and living donation would you like to see answered by research?, questions from previous studies also included, survey received 440 potential research questions, 57 further questions added from review, resulting in a total of 497 potential research questions. Step 3: data processing: questions reviewed, out-of-scope removed, translated into answerable questions, grouped into similar themes, indicative questions in PICO format formulated, 97 indicative questions formulated, check against evidence, 7 already answered, resulting in 90 indicative questions, 45 submitted by three or more people and thus taken forward. Step 4: interim ranking: survey asking participants to rate each question, glossary of terms developed to help non-professional participants understand medical terminology, steering group decided to take the top 25 ranked questions overall to workshop. Step 5: final prioritization: workshop: small group discussions and ranking, whole group discussions and ranking

Which stakeholders took part?

Transplant recipients and those on the transplant waiting list, their carers, live kidney donors and professionals. Survey: 183 participants: professionals (36.1%), patients (37.7%), carers (2.2%) and live donors (21.9%). Interim ranking: 256 participants: patients (30.5%), carers (4.3%), donors (10.9%) and professionals (54.3%). Workshop: 20 participants: 9 professionals (including nephrologists, transplant surgeons and allied health professionals), 7 patients and 4 donors from partner organizations.

How were stakeholders recruited?

The survey was promoted via the steering group, partner organizations and other interested individuals, websites, blogs, social media, society/organization e-mailings and print newsletters, distribution of flyers at conferences and events and display of posters and leaflets in transplant centres. The second survey was promoted in a similar way to the initial survey.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of representation from the Centre for Evidence in Transplantation, British Transplantation Society, Renal Association, British Renal Society, Kidney Research UK, the National Kidney Federation and the British Kidney Patient Association. The members developed the protocol and were involved in all stages of project management, and were involved in data processing.