Facilitating Patient and Public Involvement in basic and preclinical health research

Maccarthy, James; Guérin, Suzanne; Wilson, Anthony G.; Dorris, Emma R.

doi:10.1101/425371

Cited by 1 publication

(3 citation statements)

References 32 publications

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“…As per Maccarthy et al (2018), challenges surrounding public involvement were asked in the context of institutional barriers, personal worries and research concerns [ 17 ]. There were 81 responses to the question on institutional barriers [In your view, what are the institutional barriers to including public involvement in your research?].…”

Section: Resultsmentioning

confidence: 99%

“…There were 81 responses to the question on institutional barriers [In your view, what are the institutional barriers to including public involvement in your research?]. The well documented challenges of regulations, resources and funding were major themes emerging from the data [ 7 , 17 , 28 , 29 ]. The other major theme was that of career benefit.…”

Section: Resultsmentioning

confidence: 99%

“…Both citizen science and PPI are most commonly practiced by public-facing disciplines. Expanding public involvement to laboratory-based and non-public facing disciplines is more challenging for all stakeholders [16][17][18].…”

Section: Plos Onementioning

confidence: 99%

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

Burns

Holden

Korzec³

et al. 2021

PLoS ONE

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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.

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Section: Resultsmentioning

confidence: 99%