Understanding the experience, costs and consequences of patient and public involvement in Primary Care research

The National Institute for Health Research encourages patients and the public to be actively involved in all NIHR-funded health and social care research. Yet wide variation exists in the practice and process of PPI. Two systematic reviews of patient and public involvement have been published in the UK recently and these identify a range of benefits of PPI but also note the immature state of the evidence base. Recommendations are for qualitative research to “tell the story of involvement” and take explicit account of process and context as well as impacts, and for researchers to develop methods of economic analysis for PPI in research.

This study aims to understand the experience, costs and consequences of patient and public involvement in Primary Care research for patients, researchers and organisations. It is a mixed method study that utilises multiple qualitative methods and economic analysis. We will undertake interviews with patients, focus groups with researchers and observations of PPI meetings. We will also analyse documents and undertake exploratory economic studies.

In summary the project will have 5 parts
1. In-depth semi-structured qualitative interviews to tell the patient story of PPI involvement
2. Focus groups with researchers
3. Ethnographic observations to understand interactions in PPI in research
4. Documentary analysis of PPI activity across the School
5. Economic analysis to identify costs and consequences and willingness to pay models.

As part of our analytical framework we will also draw upon new and untested methods for assessing the quality of patient and public involvement in research.

We will adopt novel dissemination practices by using Healthtalkonline (http://www.healthtalkonline.org/) to make available results of the study to patients, health care professionals and researchers.
Overall the project will enable a rich and nuanced understanding of the PPI and a typology of PPI for primary care (and wider research) settings can be generated, providing practical guidance for implementation on effective PPI in practice. Refined theoretical models of PPI for health care research will also be generated.