Library of examples

Seven sets of examples (2013–14) exploring the impact of public involvement in research.  Each series offers a different perspective of impact:

1. Keith Wilson, Patient Ambassador talking about his experience of public involvement at the Liverpool Heart and Chest Hospital
2. Twelve examples of impact case studies reporting public involvement in research submitted to the Research Excellence Framework (REF) 2014 Medical and Health Sciences Panels.
3. Five examples of how and why NIHR Senior Investigators have involved patients and the public in their work. The 2014 publication has a foreword from Sally Davies, Chief Medical Officer and Chief Scientific Adviser, Department of Health and an introduction from Simon Denegri, Chair of INVOLVE and National Institute for Health Research (NIHR) National Director for Public Participation and Engagement in Research.
4. Ten examples of public involvement in National Institute for Health Research (NIHR) research funding applications drawn from a broad range of studies across the NIHR. This 2013 series illustrates the uniqueness of the public involvement in each study, the researchers describe how they involved members of the public and the difference it made to their application.
5. Six examples on the impact on research quality from invoNET members in 2013. They offer a range of different perspectives on public involvement in research, and describe quite different approaches to research.
6. Five examples of public involvement in studies funded by NIHR Evaluation, Trials and Studies Programme.
7. Nine examples of the use of social media for active public involvement in research. These examples are drawn from a range of different research projects and report on the use of Twitter, Facebook, blogs and interactive websites. They complement the 2014 document Guidance on the use of social media to actively involve people in research

See also social care examples described in Turning the Pyramid Upside Down (2010) and User Controlled examples in Changing Our Worlds: Examples of User Controlled Research in action (2010).

INVOLVE has long been interested in gathering evidence about the impact of public involvement on research. In 2005 INVOLVE established invoNET as a network for researchers and others interested in developing evidence and learning about the impact of public involvement on research. Our Evidence library contains references of published articles that consider the impact or the nature and extent of public involvement in research. In 2010 we launched a joint funding call on public involvement in research funded by the National Institute for Health Research (NIHR) through INVOLVE and delivered by the NIHR Health Services and Delivery Research (HS&DR) programme managed by NIHR Evaluations, Trials and Studies Coordinating Centre (NETSCC). The call was seeking primary research to develop the evidence base and enhance our understanding, knowledge and learning on public involvement in research.

The evidence that we have to date suggests that public involvement can make positive contributions to research (Ennis, 2013, Brett, 2010). The structured literature review of the evidence funded by INVOLVE in 2009 (Staley, 2009), reported that public involvement in research can influence the research topics and direction of research, project design and methods, recruitment and data collection, analysis and dissemination. Public involvement can also positively impact on the people involved in the research.

Staley makes a plea for producing guidance on how to report on the impact of involvement in journal articles and reports; finding more consistent and robust ways of assessing impact; and helping researchers and the public to find the most useful ways of telling the ‘story of involvement’. A similar recommendation was made by the authors of the 2010 systematic review which they followed up by proposing a ‘GRIPP’ checklist for reporting involvement (Staniszweska, 2011), and more recently by the Public Involvement Impact Assessment Framework (PiiAF) Study (Popay et al, 2013).

References

Ennis, L. and Wykes, T. (2013) Impact of patient involvement in mental health research: longitudinal study. The British Journal of Psychiatry, EPub, doi: 10.1192/bjp.bp.112.119818

Brett, J., Staniszewska, S. and Mockford, C. (2010) The PIRICOM Study. A Systematic Review of the Conceptualisation, Measurement, Impact and Outcomes of Patient and Public Involvement in Health and Social Care Research. London: United Kingdom Clinical Research Collaboration.

Staley, K. (2009) Exploring Impact: Public involvement in NHS, public health and social care research. Eastleigh: INVOLVE.

Staniszewska, S., Brett, J., Mockford, C. and Barber, R. (2011) The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. International Journal of Technology Assessment in Health Care 27:4.

Popay, J., Collins, M. et al (2013) PiiAF – Public Involvement Impact Assessment Framework and Guidance website