Patient and public involvement in translative healthcare research

Abstract

Purpose -This paper aims to set out a framework that can be used for locating strategies for incorporating patient and public involvement (PPI) in the wider process of translative healthcare research. Design/methodology/approach -This paper is analytical and synthesizes knowledge from several disciplines in order to provide a coherent framework for understanding the scope and purpose of PPI. The framework sets out four idealised strategies for PPI based on mode and purpose of involvement. The paper concludes by summarising a range of implications for organisations involved in the governance of translative healthcare research. Findings -The framework defines four idealised strategies for PPI in translative healthcare research. The strategies range in purpose from collecting patient data, through to improving public involvement and knowledge with respect to healthcare research. Practical implications -The framework presented has direct relevance for agencies concerned with the management and governance of translative healthcare research. The framework is relevant when either designing or auditing research pathways in terms of PPI activities. The framework is also important in highlighting to healthcare leaders, researchers, patients and the wider public, the potential role of participation in healthcare research. Originality/value -This paper's value is that it combines perspectives from the wider literature on innovation, user-led design and participation, to the problem of translative healthcare research.

Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

“…Four papers proposed a “framework of frameworks” taxonomy of approaches to patient and public involvement in research (see Discussion for details) Power‐focused: designed to surface, explore and overcome researcher‐lay power imbalances; Priority‐setting: designed to involve patients and lay people in setting research priorities; Study‐focused: designed to maximize recruitment and retention to clinical trials (and, less commonly, other study designs), thereby improving the quality and efficiency of research and/or maximizing its societal impact; Report‐focused: designed to guide writing up and critical appraisal of research reports; Partnership‐focused: designed to assure transparency and public accountability in researcher‐lay collaborations. …”

“…A total of 56 frameworks were written up in 55 academic papers. 5,10,12,31,[33][34][35][36][38][39][40][41][42][43][44][45][47][48][49][50]52,53,[55][56][57][60][61][62][63][64][65][66][67][69][70][71][72][73][74][75][76][77][78][79][80][81][82][83][84][87][88][89][90]…”

“…Most frameworks had been developed using a systematic approach with substantial input from patients or lay people, though approaches used varied considerably. Some groups had used primary qualitative research 50,55-57,81,84 and/or qualitative, thematic or narrative literature review, 5,10,[33][34][35][39][40][41][42]44,47,58,[62][63][64]70,74,76,81,82,85,87 realist review (asking "what works for whom in what circumstances"), 48,79,80 a consensus-building process such as Delphi 34,38,52,58,69 or economic modelling. 71 Other frameworks had been developed in a more pragmatic way by working groups (typically involving lay people, researchers and/or research funders) with extensive consultation but without an in-depth review of the relevant academic literature.…”

“…46,54 Four papers proposed a "framework of frameworks" taxonomy of approaches to patient and public involvement in research (see Discussion for details). [62][63][64]83 The remaining 61 frameworks could be grouped into five main categories (though several had features of more than one): In the first and last of these, the presumed unit of analysis was a partnership (actual or desired). In the middle three, the presumed unit of analysis was a research study (usually, a clinical trial).…”

Evaluating patient and stakeholder engagement in research: moving from theory to practice

“…Research questions, hypotheses, interventions and medical technologies become more relevant/usable for patients [1,54,55] Patients' experiential knowledge helped shape research question [23] None reported Patient research partners provided insight/access into social networks, patient organizations and the healthcare field [23] Patients helped translate scientific jargon into plain language materials [23] Patients provided feedback on intervention design and data collection instrument [48] None reported Recruitment, accrual rates and retention improves [9,28,34,38,54] Representativeness/diversity of research subjects (i.e., inclusion of more hard-to-reach patients) [34,36,41] Patients contributed ideas to increase recruitment (e.g., feedback on patient advertisements) and modifications to interview schedules [48] Majority of clinical trials using CBPR from systematic review demonstrated effective recruitment of minority populations and high retention rates [20] Data collection procedures and data quality changes [34,36,38,51,57,58] None reported None reported…”