From intent to implementation: Factors affecting public involvement in life science research

Abstract

Public involvement is key to closing the gap between research production and research use, and the only way to achieving ultimate transparency in science. The majority of life science research is not public-facing, but is funded by the public and impacts communities. We undertook an exploratory survey of researchers within the life sciences to better understand their views and perceived challenges to involving the public in their research. As survey response rate could not be determined, interpretation of the results must be cautious. We had a valid response cohort of n = 110 researchers, of whom 90% were primarily laboratory based. Using a mixed methods approach, we demonstrate that a top-down approach is key to motivate progression of life scientists from feeling positive towards public involvement to actually engaging in it. Researchers who viewed public involvement as beneficial to their research were more likely to have direct experience of doing it. We demonstrate that the systemic flaws in the way life sciences research enterprise is organised, including the promotion system, hyper-competition, and time pressures are major barriers to involving the public in the scientific process. Scientists are also apprehensive of being involuntarily involved in the current politicized climate; misinformation and publicity hype surrounding science nowadays makes them hesitant to share their early and in-progress research. The time required to deliberate study design and relevance, plan and build relationships for sustained involvement, provide and undertake training, and improve communication in the current research environment is often considered nonpragmatic, particularly for early career researchers. In conclusion, a top-down approach involving institutional incentives and infrastructure appears most effective at transitioning researchers from feeling positive towards public involvement to actually implementing it.

Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers

“…However, medical and health research has its own long-standing traditions of participation by non-scientific actors; for instance, the approaches of patient and public involvement (PPI; Baines & Regan de Bere, 2018), patient-oriented research (POR; Rouleau et al, 2018), community-based participatory research (CBPR; Wallerstein et al, 2018), or participatory health research (PHR; Wright & Kongats, 2018). Both fields-citizen science and established participatory approaches in health research-so far seem to co-exist largely disjoined from each other (Burns et al, 2021).…”