Public involvement in research: Getting the measure of success

Simon is the National Director for Public Participation and Engagement in Research and chairman of INVOLVE, a national organisation promoting and supporting public involvement in health research.

Public involvement in research has grown significantly in recent years.  There are now tens of thousands of people working alongside academics and funders designing and conducting research on subjects ranging from health to physics and from local history to conservation.  

Research undertaken to inform the development of the PiiAF found that almost 90% of people asked thought it was important that the impacts of involving the public in research should be assessed.  We identified more than 200 different types of impacts - on research and on the people involved - in a review of literature, around 2/5 of them negative.   But very little of this literature is reporting on rigorous evaluations.

Dr Andrew Gibson, of the University of Exeter Medical School, was involved in the review of values in patient participation, and led the Patient Advisory Group which was integral to the project He said: "Patient and public involvement in health research has grown rapidly in recent years. We are committed to public involvement because we believe that patients have a right to influence the research that they are supposed to benefit from. On top of that, research which directly addresses the needs of patients is more likely to be useful to the NHS. Assessing the impact of public involvement in research is complex and difficult but it is also crucial in order to learn, develop and take forward this important work on a firm academic basis."

Jennie Popay, Professor of Sociology and Public Health at Lancaster University, led the team of researchers and who organised the workshop. She said: “The complexity of public involvement in research makes evaluation very challenging - no single assessment method will cover all situations. However, this new resource will help researchers to identify the issues that could affect the impacts public involvement can have on their research and to develop an approach to assessing these impacts that is tailored to their particular situation.”

At the launch researchers, research funders and members of the public heard more about PiiAF and got a chance to try out the online version, which will go live this autumn.

The PiiAF framework helps users develop a pathway from their approach to public involvement through to the impacts they want it to have, to identify questions for their evaluation and to decide on the most appropriate methods to use.  

Prior testing of the PiiAF resource has shown it will also be a useful resource in training for researchers and members of the public interested in getting involved in research. 

The Public Involvement Impact Assessment Framework was developed through extensive research funded by the Medical Research Council Methodology Research Programme.  The public were involved as user investigators on the research team and through the study’s Public Advisory Group and National Advisory Network.  

The PiiAF study team includes:  Jennie Popay1, Nicky Britten2, Ann Jacoby3, Michelle Collins1 Dee Snape3, Felix Gradinger2 Katherine Froggatt1, Fiona Lobban1, Debbie Mayes1, Tim Rawcliffe5, Jenny Preston4, Andy Gibson2, Elaine Hewis2 and Katrina Wyatt2

1 Lancaster University, 2 Exeter University  3 University of Liverpool 4 Medicines for Children Research Network