Involving patients and the public in medical and health care research studies: An exploratory survey on participant recruiting and representativeness from the perspective of study authors.

Jonas Lander,Marie-Luise Dierks,Holger Langhof,Antony Bayer

doi:10.1371/journal.pone.0204187

Abstract

Research on patient and public involvement so far concentrates on defining involvement, describing its methods, and analyzing involvement practices in various individual research disciplines. There is little empirical data on the process of and aims for selecting (lay) PPI participants, and to what extend they can and should be representative of the population at large. To explore practices and perceptions on these issues and on future PPI conduct more generally, we sent an electronic survey to authors who published involvement activities as part of their studies in medical and social science journals. We identified such authors with a systematic search of five databases and applied descriptive statistics for analysis. Of those who returned the survey (n = 127 of 315; 40%), most had previously conducted involvement activities (73%). 45% reported more than one type of involvement, e.g. consultation and deliberation and participation (14%) and to have recruited more than one type of participant for their PPI activity (56%), e.g. ‘lay publics’ and ‘expert publics’ (33% of 71). Representativeness was often seen as a crucial objective when selecting PPI participants, while less than half found it very easy (9%) or rather easy (34%) to select participants. Many respondents considered achieving good representativeness difficult (52%) or very difficult (17%). They identified significant respective challenges and desired more guidance on various aspects of planning and conducting PPI (56%). 55% thought that the concept of “involvement” should be changed or improved. We conclude that recruiting lay people for PPI activities and deciding about and handling representativeness are controversial in current PPI practice, given the manifold challenges mentioned by the survey respondents. Our findings may inform further research particularly regarding–the potentially many cases of–unpublished PPI.

Highlights

Recent research on Patient and Public Involvement (PPI) has identified a range of reasons to involve patients and the public in medical research and health policy
Since the survey was anonymous unless authors voluntarily provided the publication title, the PPI subject could only be obtained for 65 studies (Table 2)
A Delphi process by Kearney et al [40], which involved PPI stakeholders from a variety of backgrounds, describes recruiting and retention of participants as a PPI research priority, in relation to PPI as a means to improve the recruiting for clinical trials, not PPI participants as such

Summary

Introduction

Recent research on Patient and Public Involvement (PPI) has identified a range of reasons to involve patients and the public in medical research and health policy These include the need to align research priorities with societal preferences [1,2,3], the reorganization of existing health care services [4], and assessing the impact and value of health technologies and health services [5]. Various (inter-)national organizations such as INVOLVE UK, NICE Patient and Public Involvement Programme (PIP) and the International Association for Public Participation (IAP2) run PPI advisory and interest groups. They serve different objectives and tasks, mainly advancing PPI frameworks, strengthening PPI in guideline development, and making PPI a prerequisite for instance for project funding [10,11,12]. “Deliberation” is another commonly used term to refer to discussing and exchanging different perspectives on a given subject and, based on this, rethink one’s own position and adapt or explore new perspectives [16,17]

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Conclusion