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