Abstract: In the UK, more patients go to primary care than other parts of the health service. Therefore it is important for research into primary care to include the insights and views of people who receive these services. To explore the extent, quality and impact of patient and public involvement (PPI) in primary care research, we examined documents of 200 projects and surveyed 191 researchers.
We found that about half of studies included PPI to develop research ideas and during the study itself. Common activities included designing study materials, advising on methods, and managing the research. Some studies did not undertake the PPI activities initially planned and funded for. PPI varied by study design, health condition and study population. We found pockets of good practice: having a PPI budget, supporting PPI contributors, and PPI informing recruitment issues. However, good practice was lacking in other areas. Few projects offered PPI contributors training, used PPI to develop information for participants about study progress and included PPI to advise on publishing findings.
Researchers reported beneficial impacts of PPI. Most impact was reported when the approach to PPI included more indicators of good practice. The main cost of PPI for researchers was their time. Many reported difficulties providing information about PPI.
In partnership with PPI contributors, we have used these findings to develop:
a new Cost and Consequences Framework for PPI highlighting financial and non-financial costs, benefits and harms of PPI
Fifteen co-produced recommendations to improve the practice and delivery of PPI.
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Categories: journal article service users and carers researchers relevant to all service users general principles of good practice General guidance on involving the public in research assessing the quality of involvement
Date Entered: 2019/01/08
Date Edited: 2019/01/08