The role of patient and public involvement in rapid qualitative studies: Can we carry out meaningful PPIE with time pressures?

Abstract

Introduction Rapid qualitative studies conducted with patient and public involvement can help promote policy-relevant and efficient research. There is a need to understand the experiences of researchers, patients, and members of the public to guide the development of good practice and to determine the extent to which rapid qualitative research can be implemented in PPIE projects. Methods We conducted a qualitative study to explore the experiences of research teams that carried out studies using rapid techniques with patient and public involvement. We carried out 26 interviews with researchers, coordinators, patients, carers, service users and members of the public. Results This study identified needs which related to practical and time constraints. Rapid qualitative research tends to be limited to certain PPIE groups, and particular phases of the research process. Study findings are rarely discussed with PPIE members. The educational needs of rapid qualitative research were also identified. Researchers and PPIE members considered three main issues: a lack of training on patient involvement for researchers, rapid qualitative research training for PPIE members, and the diversity of PPIE members. Conclusion We found that rapid researchers were able to involve patients and members of the public in research despite time pressures. The challenges identified in this study can be used to plan future training programmes for researchers and PPIE panel members and develop strategies to recruit PPIE panel members from a wide range of backgrounds. Public contribution The research aim was to explore the experiences of those carrying out rapid qualitative studies with PPIE. As such, the participants of this study included patients, carers, service users and members of the public, who were interviewed individually. A lived experienced researcher and PPIE member for a hospital conducted the design, data collection and analysis of the study. The study brief was to interview researchers only. The lived-experience researcher initiated the inclusion of PPIE members as participants, therefore strengthening the study design. We shared the draft report with the PPIE participants for participant validation and to maintain a continuous feedback relationship. This led to addressing key issues in designing and involving PPIE members in more meaningful and equal ways. Whilst there is agreement on activities which centre on PPIE, there is no consensus on how to achieve these in high quality rapid qualitative studies.

Editorial: Rapid research in action: lessons from the field

“…Key questions are raised in this volume and elsewhere regarding how we can create meaningful relationships with patients, carers and members of the public so they can properly engage with the topics we are studying, how we are studying them, who is included in research and how findings are used. Patient and public involvement and engagement (PPIE) in rapid research has particular challenges that might not be present in longer studies (Gilchrist et al, 2022 ), yet important work is currently underway to develop a model for involvement and engagement that can be suitable for rapid timeframes. One example is SPRINT (Strategies for Patient and Public Involvement in Research in Time-Sensitive Contexts), a network of organizations working on PPIE that can operate under a rapid response model so the views, preferences and needs of patients and members of the public can remain at the center of rapid research and evaluation.…”