Implementing public involvement throughout the research process—Experience and learning from the GPs in EDs study

Abstract

Background Public involvement in health services research is encouraged. Descriptions of public involvement across the whole research cycle of a major study are uncommon and its effects on research conduct are poorly understood. Aim This study aimed to describe how we implemented public involvement, reflect on process and effects in a large‐scale multi‐site research study and present learning for future involvement practice. Method We recorded public involvement roles and activities throughout the study and compared these to our original public involvement plan included in our project proposal. We held a group interview with study co‐applicants to explore their experiences, transcribed the recorded discussion and conducted thematic analysis. We synthesized the findings to develop recommendations for future practice. Results Public contributors' activities went beyond strategic study planning and management to include active involvement in data collection, analysis and dissemination. They attended management, scrutiny, planning and task meetings. They also facilitated public involvement through annual planning and review sessions, conducted a Public Involvement audit and coordinated public and patient input to stakeholder discussions at key study stages. Group interview respondents said that involvement exceeded their expectations. They identified effects such as changes to patient recruitment, terminology clarification and extra dissemination activities. They identified factors enabling effective involvement including team and leader commitment, named support contact, building relationships and demonstrating equality and public contributors being confident to challenge and flexible to meet researchers' timescales and work patterns. There were challenges matching resources to roles and questions about the risk of over‐professionalizing public contributors. Conclusion We extended our planned approach to public involvement and identified benefits to the research process that were both specific and general. We identified good practice to support effective public involvement in health services research that study teams should consider in planning and undertaking research. Public Contribution This paper was co‐conceived, co‐planned and co‐authored by public contributors to contribute research evidence, based on their experiences of active involvement in the design, implementation and dissemination of a major health services research study.

Programme theories to describe how different general practitioner service models work in different contexts in or alongside emergency departments (GP-ED): realist evaluation

“…They were involved in discussing the draft data and have a publication reflecting their experiences in this study. 21 …”

Experiences and views of people who frequently call emergency ambulance services: A qualitative study of UK service users

“…We have all agreed on the interpretation presented in the results and discussion sections of this paper. Our approach provided the analysis team with experience‐based expertise alongside research‐based expertise to strengthen insight and interpretation of the data 38,39,44,46 …”

“…This approach provided an opportunity for patients to frame their own narrative about their circumstances, experiences and views regarding their needs, service use and care received, including any case management intervention. We also explored terminology 38,39 . A. K., A. P. and A. T. conducted interviews.…”

“…We also explored terminology. 38 , 39 A. K., A. P. and A. T. conducted interviews. With respondents' consent, we audio‐recorded and transcribed all interviews.…”

“…Our approach provided the analysis team with experiencebased expertise alongside research-based expertise to strengthen insight and interpretation of the data. 38,39,44,46 EVANS ET AL.…”