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

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 Our findings may inform further research particularly regarding–the potentially many cases of–unpublished PPI.

Exploring Research Priorities of Parents Who Have Children With Down Syndrome, Cleft Lip With or Without Cleft Palate, Congenital Heart Defects, or Spina Bifida Using ConnectEpeople: A Social Media Coproduction Research Study

“…Across Europe, awareness of the benefits of patient and public involvement (PPI) in health care research is rapidly increasing [10]. Lander et al [11] has identified a number of benefits of actively engaging with service users, including the development of research goals that are congruent with those of the public and “assessing the impact and value of health technologies and health services.” However, there remains wide variation among countries in the opportunities to do so [10]. In the United Kingdom, PPI in research refers to researchers and patients, carers, and the public working in collaborative partnership to add value to the research process in an accessible and meaningful way [12].…”

An emerging framework for fully incorporating public involvement (PI) into patient-reported outcome measures (PROMs)

“…Involving more than one person increases the breadth of experience to the project, allows those involved to support and encourage each other, and allows for multiple perspectives. PI members cannot be representative of everyone who has a specific condition [23,24]. Having a PI team is beneficial to allow for wider diversity and experiences.…”

Patient involvement in developing a patient‐targeted feedback intervention after depression screening in primary care within the randomized controlled trial GET.FEEDBACK.GP

“…As a consequence, the involved patients did not represent the entire future target group for the feedback intervention. 68 When checking the comprehensibility and acceptance of the two feedbacks, five out of nine participants took part in at least one of the previous workshops. Because they already commented on content-, language-and design-related aspects of the feedback, their initial reaction may have been biased.…”