Assessing research participant preferences for receiving study results

Journal of Clinical and Translational Science
Sarah CookShari L Barkin

Abstract

Dissemination of results to research participants is largely missing from the practices of most researchers. Few resources exist that describe best practices for disseminating information to this important stakeholder group. Four focus groups were conducted with a diverse group of individuals. All participants were part of a Patient-Centered Outcomes Research Institute-funded survey study. Focus groups aimed to identify participants' preferences about receiving research results and their reactions to three different dissemination platforms. Four focus groups with 37 participants were conducted, including: (1) adults with one comorbidity, at least a college education, and high socioeconomic status (SES); (2) adults with one comorbidity, less than a college education, and lower SES; (3) adults with low health literacy and/or numeracy; and (4) Black or African American adults. Participants discussed their preferences for research results delivery and how each of the platforms met those preferences. This included information needs as they relate to content and scope, including a desire to receive both individual and aggregate results, and study summaries. Email, paper, and website were all popular avenues of presentation. Some desi...Continue Reading

References

Jul 16, 2002·JAMA : the Journal of the American Medical Association·Ann H Partridge, Eric P Winer
Sep 16, 2003·Journal of Pediatric Hematology/oncology·Conrad V FernandezUNKNOWN Children's Oncology Group
Mar 16, 2004·Annual Review of Public Health·Matthew W Kreuter, Stephanie M McClure
Aug 11, 2005·JAMA : the Journal of the American Medical Association·David I Shalowitz, Franklin G Miller
Dec 2, 2005·PLoS Medicine·David WendlerEzekiel Emanuel
May 10, 2006·Bioethics·Gaile RenegarCelia Brazell
Sep 18, 2007·International Journal for Quality in Health Care : Journal of the International Society for Quality in Health Care·Allison TongJonathan Craig
Jun 13, 2008·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Benjamin S Wilfond, Katherine J Carpenter
Aug 26, 2009·Annual Review of Public Health·Lawrence W GreenRobert A Hiatt
Aug 3, 2010·European Journal of Oncology Nursing : the Official Journal of European Oncology Nursing Society·Karen CoxRuth Elkan
Dec 31, 2010·Trends in Genetics : TIG·Annelien L BredenoordJohannes J M van Delden
Sep 13, 2013·The American Journal of Bioethics : AJOB·Lauren C MilnerNanibaa' A Garrison
Aug 6, 2014·British Journal of Cancer·K SharrocksS Papa
Mar 18, 2016·Preventing Chronic Disease·Bryce McDavittKelsey A Nogg
Aug 27, 2016·Clinical Trials : Journal of the Society for Clinical Trials·Christopher R LongPearl A McElfish
Sep 28, 2017·AJOB Empirical Bioethics·Rachel S PurvisPearl Anna McElfish
Jun 23, 2018·JAMA : the Journal of the American Medical Association·Charlene A WongRobert M Califf
Mar 5, 2019·Health Affairs·Consuelo H WilkinsPaul A Harris
Mar 6, 2019·Health Research Policy and Systems·Christopher R LongPearl A McElfish

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Citations

Jul 23, 2020·Journal of Clinical and Translational Science·Kathleen R Stevens, Jonathan N Tobin
Jul 11, 2021·Translational Behavioral Medicine·Tilicia L Mayo-GambleYvonne Joosten

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