Patient and Public Involvement in research
28 November 2011
Three projects have been funded so far under a joint call between the NIHR HSR programme and INVOLVE with the aim of enhancing understanding, knowledge and learning about public involvement in research.
The Department of Health recommends that the public should be involved in all publicly funded research. There is limited evidence that demonstrates how public involvement achieves this in practice and few primary studies have investigated the impact of involvement and the practical benefits, adverse effects or true costs.
The first study, led by Dr Carrol Gamble of the University of Liverpool, will use a cohort of randomised controlled trial applications made to the NIHR Health Technology Assessment (HTA) programme between 2006 and 2010, to see the level of planned patient/public involvement and to determine if this differed from what took place during the research.
The team will examine the HTA programme applications to determine planned involvement and then survey and interview researchers and patient/public representatives to identify how this differed in practice. Optimum approaches supported with examples of impact will be identified as well as barriers to involvement.
Dr Gamble said; “It is important to develop a better understanding of how to maximise the impact of involving patient/public representatives in this area. Evaluating current approaches and identifying impact in an unselected cohort will contribute to this aim”. View the project details
The second study aims to find out what kind of public involvement works best, what does not work and in what circumstances.
Led by Dr Patricia Wilson of the University of Hertfordshire, the research will involve a varied range of settings, research methods and public involvement focusing on six topic areas: cystic fibrosis, diabetes, arthritis, dementia, learning disabilities, and public health. It will involve patients across the life span ranging from those living with significant disability to those who have less severe health problems.
The team will systematically search up to 20 in-depth case studies in the six broad topic areas that are underway or completed within the previous two years in four regions in England; London, South West, East of England and North West. They will then examine information available on these studies to help identify the extent and type of public involvement. They will then track the impact and outcomes of public involvement over 18 months.
Dr Wilson said; “This study will enable researchers, funders and the public concerned to make better informed decisions about which approaches work best in particular contexts and what differences public involvement in research can make. This is important as public involvement can be resource and time intensive for all those involved and robust evidence is needed on how to maximise the benefits within different types of research.” View the project details
The third study, led by Professor David Evans of the University of the West of England, will look at the relationship between the context of public involvement in research, for example, institutional support for involvement in a research organisation, the mechanisms that support public involvement, for example training and mentoring, and the desired outcomes, such as improved research design.
The team will develop the theory of how public involvement in research works in the real world, integrating different stakeholder perspectives; service users, researchers, research managers, funders, policy makers and practitioners, through a consensus workshop. They will then track the impact of public involvement in research in eight case studies through a series of interviews. In addition, some of the stakeholders will be asked to complete a diary log to record information about the costs of public involvement for an economic analysis.
Professor Evans commented; “Our study will include research with young people and families with children as they are important users of health services and less attention has been paid to developing good practice with them. We will identify findings for the key contextual factors and mechanisms to maximise the impact of public involvement in research.” View the project details