Research participation registers can increase opportunities for patients and the public to participate in health services research

Journal of Health Services Research & Policy
Verity LeachJenny Donovan

Abstract

Members of the public and patients repeatedly indicate their willingness to take part in research, but current United Kingdom research governance involves complex rules about gaining consent. Research participation registers that seek consent from participants to be approached about future studies have several potential benefits, including: increased research participation across clinical and healthy populations; simplified recruitment to health care research; support for people's autonomy in decision making; and improved efficiency and generalizability of research. These potential benefits have to be balanced against ethical and governance considerations. With appropriate processes in place, seeking prospective consent from patients and members of the public to be approached about future studies could potentially increase public participation in health research without compromising informed consent and other ethical principles.

References

Dec 2, 2005·PLoS Medicine·David WendlerEzekiel Emanuel
Jul 14, 2007·Journal of Women's Health·Juliet L RogersYolanda R Smith
Jun 19, 2008·Cancer Epidemiology, Biomarkers & Prevention : a Publication of the American Association for Cancer Research, Cosponsored by the American Society of Preventive Oncology·Laura M Beskow, Elizabeth Dean
Jul 18, 2008·Medicine, Health Care, and Philosophy·Mary Dixon-Woods, Richard E Ashcroft
Sep 14, 2010·Journal of Empirical Research on Human Research Ethics : JERHRE·Evette J LudmanWylie Burke
Nov 23, 2011·Academic Medicine : Journal of the Association of American Medical Colleges·Paul A HarrisJill Pulley
Jan 21, 2012·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Daryl PullmanCatherine Street
Jan 26, 2012·Clinical Trials : Journal of the Society for Clinical Trials·N Maritza DowlingCarey Gleason
Feb 1, 2012·BMC Medical Research Methodology·Sabi RedwoodSheila Greenfield
Mar 13, 2012·Contemporary Clinical Trials·Rachel L RichessonJeffrey P Krischer
May 8, 2014·European Journal of Human Genetics : EJHG·Jane KayeKaren Melham
Jul 10, 2014·Health Affairs·Rachael L FleurenceJoe V Selby

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Citations

Jun 2, 2020·Alzheimer's & Dementia : Translational Research & Clinical Interventions·Miriam T AshfordRachel L Nosheny

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