Patient and public involvement
Why do we need diversity in PPI?
Findings from research can have massive and diverse impacts, both negative and positive. However, to ensure research meets the needs of all those who could benefit and/or are potentially impacted, the voices of all essential stakeholders must be heard from a very early stage.
The benefit of involving public stakeholders is similar to involving potential industrial partners. PPIs can share experiences that may not have been considered by the research team but could impact research design, widen the increase in the impact of the research, identify potential barriers to cooperation and compliance, and hear useful insights that could benefit the research plan and hypotheses. However, it is important to ensure all voices are heard, to avoid unhelpful bias and exclusion of the thoughts and opinions of potential beneficiaries or those who could be impacted by the research e.g., carers, local populations.
It is expected, under the UK Public Involvement Standards – Inclusive Opportunities that “Public involvement partnerships are accessible and include a range of people and groups, as informed by community and research needs. Research to be informed by a diversity of public experience and insight, so that it leads to treatments and services which reflect these needs”. Although the focus of this NIHR expectation is on health care the principle applies to all research i.e. that research should be informed by a diversity of public experiences and the impacts of research should reflect and benefit the diversity of needs.
Useful resources
- The University of Oxford has a comprehensive set of guidance and suggestions about how to engage people from diverse and under-represented groups in health research.
- NIHR Reflections on reflecting – how to promote diversity in patient and public involvement
- Diversity in patient and public involvement in healthcare research and education—realising the potential. Hatch S, Fitzgibbon J, Tonks AJ, Forty L.
- ‘A commitment to Equality, Diversity and Inclusion’: a conceptual framework for equality of opportunity in Patient and Public Involvement in research. Lignou, S., Sheehan, M., & Singh, I.