Why involve the public in research?
PPI work across research has developed over the last 20 years from being regarded as, ‘a nice idea to do if possible’, to a funding requirement for key funders.
The push has come from researchers and their funders, but also from patients and public; there is increasing evidence that health research conducted with PPI achieves better outcomes for patients.
PPI benefits include:
- Patients and the public prioritise topics for research that are different to those of academics and health professionals (Boers et al 2015; Crowe et al 2015)
- People living with a health condition are often in a better position to know what questions remain unanswered about their treatment or condition, and what research would most likely improve their quality of life (Evans et al 2011)
- Patients can advise on the most meaningful and relevant outcome measures in clinical trials (COMET Initiative 2016)
- PPI right at the beginning of a project helps researchers to identify new research topics and to modify their research questions (Whear et al 2012)
- It can help shift the focus of the research design to become more in line with the public’s interests and concerns. Working with members of the public means researchers have to be clearer about why they want to conduct their research and how it is relevant to the public (Staley 2016; Boers et al 2015)
- It may challenge researchers’ aims and assumptions. PPI can also influence what research outcomes are measured as well as how they are measured (Andrews 2015; Ennis and Wykes 2013; Boers et al 2013) helping to make the research findings more relevant and valuable to the people who want to use them (Blackburn et al 2015; Carter et al 2013)
- Taking part in research that is more likely to benefit the participants and / or other patients and society more generally is a more respectful and ethically acceptable use of people’s time (Staley 2016; Cossar and Neil 2015; Blackburn et al 2010)
- PPI is likely to improve recruitment to clinical trials (Crocker, Ricci-Cabello, Servet, Parker, Hirst, Chant, Petit-Zeman, Evans, Rees, 2018)
- Investment in PPI can lead to significant cost savings due to the time saved getting a drug to market (Levitan, Getz, Eisenstein, Goldberg, Harker, Hesterlee, Patrick-Lake , Roberts, DiMasi, 2018)