‘Is it worth doing?’ Measuring the impact of patient and public involvement in research

To review published examples of public involvement in research design, to synthesise the contributions made by members of the public, as well as the identified barriers, tensions and facilitating strategies. Systematic literature search and narrative review. Seven papers were identified covering the following topics: breast-feeding, antiretroviral and nutrition interventions; paediatric resuscitation; exercise and cognitive behavioural therapy; hormone replacement therapy and breast cancer; stroke; and parents' experiences of having a pre-term baby. Six papers reported public involvement in the development of a clinical trial, while one reported public involvement in the development of a mixed methods study. Group meetings were the most common method of public involvement. Contributions that members of the public made to research design were: review of consent procedures and patient information sheets; outcome suggestions; review of acceptability of data collection procedures; and recommendations on the timing of potential participants into the study and the timing of follow-up. Numerous barriers, tensions and facilitating strategies were identified. The issues raised here should assist researchers in developing research proposals with members of the public. Substantive and methodological directions for further research on the impact of public involvement in research design are set out. Copyright 2009 Elsevier Ireland Ltd. All rights reserved.

Objective To explore areas of consensus and conflict in relation to perceived public involvement (PI) barriers and drivers, perceived impacts of PI and ways of evaluating PI approaches in health and social care research. Background Internationally and within the UK the recognition of potential benefits of PI in health and social care research is gathering momentum and PI is increasingly identified by organisations as a prerequisite for funding. However, there is relatively little examination of the impacts of PI and how those impacts might be measured. Design Mixed method, three-phase, modified Delphi technique, conducted as part of a larger MRC multiphase project. Sample Clinical and non-clinical academics, members of the public, research managers, commissioners and funders. Findings This study found high levels of consensus about the most important barriers and drivers to PI. There was acknowledgement that tokenism was common in relation to PI; and strong support for the view that demonstrating the impacts and value of PI was made more difficult by tokenistic practice. PI was seen as having intrinsic value; nonetheless, there was clear support for the importance of evaluating its impact. Research team cohesion and appropriate resources were considered essential to effective PI implementation. Panellists agreed that PI can be challenging, but can be facilitated by clear guidance, together with models of good practice and measurable standards. Conclusions This study is the first to present empirical evidence of the opinions voiced by key stakeholders on areas of consensus and conflict in relation to perceived PI barriers and drivers, perceived impacts of PI and the need to evaluate PI. As such it further contributes to debate around best practice in PI, the potential for tokenism and how best to evaluate the impacts of PI. These findings have been used in the development of the Public Involvement Impact Assessment Framework (PiiAF), an online resource which offers guidance to researchers and members of the public involved in the PI process.