Attitudes and approaches to patient and public involvement across Europe: A systematic review

Abstract

The Innovative Medicines Initiative (IMI) is making great strides in promoting patient and public involvement (PPI) in health research across Europe, supporting patient organisations to be involved in the projects that it funds. Despite this, the literature around PPI in health services and research originating from European countries appears less than from the United Kingdom (UK), where PPI is well established. Therefore, we conducted a systematic review to explore the attitudes and approaches to PPI across Europe. Eight scientific databases were systematically searched and data extracted. Data quality was assessed using a checklist based on the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) (Staniszewska et al., Research, Involvement and Engagement, 3, 13, 2017) and the critical appraisal guidelines developed by Wright et al. (Health Expectations, 13, 359, 2010). We included all studies reporting PPI activity in both public and private health services and research institutions in the World Health Organization European region, excluding the UK, published in the English language from 1996 to 2018. Forty studies in total were included in the analysis. The studies imply a growing interest and support for the idea of PPI in health services and, to a lesser extent, in health research. There seems to be a convergence of conceptualisations of PPI across Europe, with internationally significant areas of innovative work taking place in countries such as the Netherlands and the Scandinavian countries. However, the implementation of PPI is highly uneven, and PPI is not yet firmly embedded or adequately formalised in European healthcare systems and research, possibly due to a lack of infrastructure, guidance and support. In order to try to get a better understanding of what is happening on the ground, we are carrying out a survey with potential follow-up interviews as the next part of this research project. This work is currently on hold due to the COVID-19 pandemic.

Keywords: Europe; approaches; attitudes; health research; health services; patient involvement; public involvement.