A review which explored how best to carry out ‘patient and public involvement’ in population health research has just been published in BMC Public Health. The review was carried out by the National Centre of Population Health & Wellbeing Research team based at Bangor University.
What is Public and Patient Involvement, and why is it important?
Public and patient involvement (PPI) involves members of the public and patients working with researchers to plan, design, carry out and disseminate research. PPI is embedded in all parts of the research process to ensure that the research is relevant to people’s needs and concerns – ensuring that those who will ultimately benefit from the study have a voice.
Aims of the review
Currently, there is a lack of guidance for researchers and PPI members on how to do PPI well. This review set out to examine how PPI can be done ‘properly’.
The team achieved this by looking at the evidence from published reviews, assessing it against the UK Standards for Public Involvement, and examining what makes PPI challenging.
The researchers identified thirty-one reviews of published studies across population health research that demonstrated good examples of PPI.
Duration. Population health research often looks at health variables over a long time – making recruiting and retaining suitable PPI representation across the length of the project more challenging.
Complexity. The many variants and complexities involved in public health research can be complex for a layperson to understand.
Data-driven. Population health projects are often driven by large datasets and can involve knowledge of algorithms, advanced statistics, and analytical techniques that can be unfriendly to the non-mathematically minded.
Representation. Population health research addresses large and diverse population groups, and it is challenging to achieve true representation, with representation becoming particularly difficult with certain underrepresented demographic groups.
- There is a lack of research and clarity around governance (standards of good practice) and impact (the effect research has on people and society).
- There is little knowledge about PPI with under-represented groups.
- There are gaps in knowledge for PPI team members – particularly around dealing with the complexity of data research.
In response to the findings of the review, the research team developed four tools to help researchers and PPI members improve their PPI activity. The tools include:
- A framework of recommended actions to address PPI in population health research.
- Guidance on integrating PPI based on the UK Standards for Public Involvement in Research.
Professor Jane Noyes, who led the review, said:
“Though PPI is increasingly important in healthcare research, there is little evidence on how best it can be done.
The findings from this work and the tools developed by the team will help us achieve our aim of facilitating excellent patient and public involvement in population and public health research.”
The National Centre for Population Health and Wellbeing Research is funded by the Welsh Government through Health and Care Research Wales.