Input from patients and the public is a requirement for funding by the UK National Institute of Health Research (NIHR), but is met by scepticism from some academics.
We analysed 70 birth cohort studies to evaluate the basis of this scepticism (P. J. Lucas et al. BMC Med. Res. Methodol. 13, 56; 2013). Such studies rely on recruiting and retaining many people over many years — often a challenge. Retention was a factor in the June decision to pause the US National Children's Study, for example (see go.nature.com/mfmhhr).
These problems might be overcome by consulting participants about research design and processes, rather than using them solely for data provision. But we found very few examples. Some scientists feared that involving participants could compromise data integrity; others lacked the right resources or were ignorant of the practice.
There is much to be gained from engaging participants in research, but persuading academics to do so will require better support and for other funders to follow the NIHR's lead.
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Lucas, P., Leggett, M. & Denegri, S. Engage more cohort patients in research. Nature 514, 567 (2014). https://doi.org/10.1038/514567d
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DOI: https://doi.org/10.1038/514567d
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