Mapping the impact of patient and public involvement on health and social care research: a systematic review

Background

There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research.

Objective

To identify the impact of patient and public involvement on health and social care research.

Design

A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon‐Woods et al. (2005) checklist.

Inclusion criteria

All study types that reported the impact PPI had on the health and/or social care research study.

Main results

A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user‐focused research objectives, development of user‐relevant research questions, development of user‐friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer‐focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified.

Conclusion

This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade.     

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

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.     

Cultural animation in health research: An innovative methodology for patient and public involvement and engagement

Background

A significant challenge in Patient and Public Involvement and Engagement (PPIE) in health research is to include a wide range of opinions and experiences, including from those who repeatedly find themselves at the margins of society.

Objective

To contribute to the debate around PPIE by introducing a bottom‐up methodology: cultural animation (CA). Cultural Animation is an arts‐based methodology of knowledge co‐production and community engagement which employs a variety of creative and participatory exercises to help build trusting relationships between diverse participants (expert and non‐experts) and democratize the process of research.

Design

Three CA full‐day workshops for the research project “A Picture of Health.”

Participants

Each workshop was attended by 20‐25 participants including 4 academics, 5 retired health professionals who volunteered in the local community and 15 community members. Participants ranged in age from 25 to 75 years, and 80% of the participants were women over the age of 60.

Results

The CA workshops unearthed a diversity of hidden assets, increased human connectivity, led to rethinking of and co‐creating new health indicators and enabled participants to think of community health in a positive way and to consider what can be developed.

Discussion

Cultural animation encourages participants to imagine and create ideal pictures of health by experimenting with new ways of working together.

Conclusion

We conclude by highlighting the main advantages to PPIE as follows: CA provides a route to co‐produce research agendas, empowers the public to engage actively with health professionals and make a positive contribution to their community.     

An empirically based conceptual framework for fostering meaningful patient engagement in research

Background

Patient engagement in research (PEIR) is promoted to improve the relevance and quality of health research, but has little conceptualization derived from empirical data.

Objective

To address this issue, we sought to develop an empirically based conceptual framework for meaningful PEIR founded on a patient perspective.

Methods

We conducted a qualitative secondary analysis of in‐depth interviews with 18 patient research partners from a research centre‐affiliated patient advisory board. Data analysis involved three phases: identifying the themes, developing a framework and confirming the framework. We coded and organized the data, and abstracted, illustrated, described and explored the emergent themes using thematic analysis. Directed content analysis was conducted to derive concepts from 18 publications related to PEIR to supplement, confirm or refute, and extend the emergent conceptual framework. The framework was reviewed by four patient research partners on our research team.

Results

Participants’ experiences of working with researchers were generally positive. Eight themes emerged: procedural requirements, convenience, contributions, support, team interaction, research environment, feel valued and benefits. These themes were interconnected and formed a conceptual framework to explain the phenomenon of meaningful PEIR from a patient perspective. This framework, the PEIR Framework, was endorsed by the patient research partners on our team.

Conclusions

The PEIR Framework provides guidance on aspects of PEIR to address for meaningful PEIR. It could be particularly useful when patient‐researcher partnerships are led by researchers with little experience of engaging patients in research.