A little more conversation please? Qualitative study of researchers’ and patients’ interview accounts of training for patient and public involvement in clinical trials

Abstract

BackgroundTraining in patient and public involvement (PPI) is recommended, yet little is known about what training is needed. We explored researchers’ and PPI contributors’ accounts of PPI activity and training to inform the design of PPI training for both parties.MethodsWe used semi-structured qualitative interviews with researchers (chief investigators and trial managers) and PPI contributors, accessed through a cohort of clinical trials, which had been funded between 2006 and 2010. An analysis of transcripts of audio-recorded interviews drew on the constant comparative method.ResultsWe interviewed 31 researchers and 17 PPI contributors from 28 trials. Most researchers could see some value in PPI training for researchers, although just under half had received such training themselves, and some had concerns about the purpose and evidence base for PPI training. PPI contributors were evenly split in their perceptions of whether researchers needed training in PPI. Few PPI contributors had themselves received training for their roles. Many informants across all groups felt that training PPI contributors was unnecessary because they already possessed the skills needed. Informants were also concerned that training would professionalise PPI contributors, limiting their ability to provide an authentic patient perspective. However, informants welcomed informal induction ‘conversations’ to help contributors understand their roles and support them in voicing their opinions. Informants believed that PPI contributors should be confident, motivated, intelligent, focussed on helping others and have relevant experience. Researchers looked for these qualities when selecting contributors, and spoke of how finding ‘the right’ contributor was more important than accessing ‘the right’ training.ConclusionsWhile informants were broadly receptive to PPI training for researchers, they expressed considerable reluctance to training PPI contributors. Providers of training will need to address these reservations. Our findings point to the importance of reconsidering how training is conceptualised, designed and promoted and of providing flexible, learning opportunities in ways that flow from researchers’ and contributors’ needs and preferences. We also identify some areas of training content and the need for further consideration to be given to the selection of PPI contributors and models for implementing PPI to ensure clinical trials benefit from a diversity of patient perspectives.

Preparing researchers for patient and public involvement in scientific research: Development of a hands‐on learning approach through action research

“…The next step is to validate the coaching programme or the approach of establishing a community of practice through reflective action research by exploring its transferability to other research contexts. This could provide more information about the value of simultaneously coaching researchers and patient participants, as suggested in other studies . It should also reveal the potential pros and cons of coaching junior and senior researchers separately.…”

“…This workshop aimed at “increasing awareness of consumer and community involvement; changing attitudes to future implementation of involvement activities and influencing behavior in the methods of involvement used.” The workshop covered fundamentals of consumer and community involvement: why it is important, benefits of and barriers to involvement, ethical considerations and methods of implementation, in particular the need to find “suitable people.” After attending the workshop, the number of participants who found PPI very relevant had doubled, and almost all confirmed that the workshop had increased their understanding of PPI. Qualitative research among UK trialists and patient representatives involved in trial steering committees found less enthusiasm for the need to train researchers, in particular from the perspective of patient research partners, who felt that researchers “already possessed the skills needed.” Although some researchers questioned the evidence base for training researchers, they did identify a need for guidance on how and when to involve patient representatives and in particular the challenge of finding “suitable people.” The study concluded by suggesting that alternative types of education, such as coaching, were suitable to learning about PPI, maybe even together with patient representatives, to learn from each other. It also encouraged further efforts to conceptualize, design and deliver PPI training to researchers, to convince them of its relevance and support uptake.…”

Coming from two different worlds—A qualitative, exploratory study of the collaboration between patient representatives and researchers

“…Previous studies have focused on experiences from either users or researchers, but we have not found any studies that have given users and researchers within health research the opportunity to discuss experiences on user involvement. Research indicates that focusing on the interaction process is one possible way of gaining in‐depth understanding of why user involvement in research is experienced as challenging, and we thus wanted to study this interaction by bringing patient representatives and researchers together.…”

Priorities for methodological research on patient and public involvement in clinical trials: A modified Delphi process

“…We used online search engines (eg Google Scholar and OVID (MEDLINE), organizational databases (eg INVOLVE library) and hand searches of citations within key articles to identify literature that systematically evaluated the scope and impact of PPI within health research to develop a list of potential methodological research topics for round 1 of the Delphi. This was supplemented by reviewing recent publications assessing PPI specifically within clinical trials . For each topic, we developed accompanying descriptive text to help explain these.…”

“…This was supplemented by reviewing recent publications assessing PPI specifically within clinical trials. 22,23,27,36 For each topic, we developed accompanying descriptive text to help explain these. The study team, including PPI partners reviewed the list of topics and accompanying descriptions to ensure they were distinct and clearly communicated challenges associated with PPI in clinical trials.…”