Returning individual research results to participants: Values, preferences, and expectations.

Autor:	Kent DA; Department of Biobehavioral Nursing Science, University of Illinois Chicago, Chicago, IL, USA.; Breathe Chicago Center, Department of Medicine, Division of Pulmonary, Critical Care, Sleep and Allergy, University of Illinois Chicago, Chicago, IL, USA., Villegas-Downs M; Department of Human Development Nursing Science, University of Illinois Chicago, Chicago, IL, USA., Rios MD; Department of Emergency Medicine, University of Iowa Hospitals & Clinics, Iowa City, IA, USA., Freedman M; Breathe Chicago Center, Department of Medicine, Division of Pulmonary, Critical Care, Sleep and Allergy, University of Illinois Chicago, Chicago, IL, USA., Krishnan JA; Breathe Chicago Center, Department of Medicine, Division of Pulmonary, Critical Care, Sleep and Allergy, University of Illinois Chicago, Chicago, IL, USA.; Office of Population Health Sciences, Office of the Vice Chancellor of Health Affairs, University of Illinois Chicago, Chicago, IL, USA., Menchaca MG; Department of Radiology, University of Illinois Chicago College of Medicine, Chicago, IL, USA., Patil CL; Department of Health Behavior and Biological Sciences, University of Michigan School of Nursing, Ann Arbor, MI, USA., Sculley J; Office of Population Health Sciences, Office of the Vice Chancellor of Health Affairs, University of Illinois Chicago, Chicago, IL, USA., Tintle N; Department of Population Health Nursing Science, University of Illinois Chicago, Chicago, IL, USA., Gerald LB; Breathe Chicago Center, Department of Medicine, Division of Pulmonary, Critical Care, Sleep and Allergy, University of Illinois Chicago, Chicago, IL, USA.; Office of Population Health Sciences, Office of the Vice Chancellor of Health Affairs, University of Illinois Chicago, Chicago, IL, USA.
Jazyk:	angličtina
Zdroj:	Journal of clinical and translational science [J Clin Transl Sci] 2024 Sep 18; Vol. 8 (1), pp. e126. Date of Electronic Publication: 2024 Sep 18 (Print Publication: 2024).
DOI:	10.1017/cts.2024.568
Abstrakt:	Background/objective: Disclosing individual research results to participants is not standard practice. The return of individual research results to participants may increase recruitment, retention, and engagement in research. This study's objective was to explore the preferences, expectations, and experiences of research participants receiving individual research results. Methods: A mixed-methods approach, consisting of semi-structured interviews and a health literacy assessment, was used with participants enrolled in a cohort study. The interviews were analyzed to produce an understanding of current experiences. Using descriptive analyses, responses were compared to identify alignments and divergences among participants. Results: Forty-three English-speaking and 16 Spanish-speaking participants enrolled. Ninety-eight percent of participants wanted to receive their individual research results. Seventy-five percent of participants reported they shared results with their healthcare providers. More participants aged 18-65 reported the need to follow up with their provider (70%) as compared to participants > 65 (20%). Two-thirds of participants reported a positive experience receiving their research results; however, 22% reported anxiety and worry. Most participants (69%) described the electronic medical record (EMR) as their preferred method for receiving their results. Yet only 50% of Spanish speakers preferred receiving research results through the EMR compared to 77% of English speakers. Participants with low health literacy preferred receiving study results in person or by phone. Conclusion: Research participants value receiving their individual research results, and this may increase recruitment and retention within the research enterprise. While more research is needed, the lessons learned from this study lay the groundwork for developing best practices and policies around the return of individual research results. Competing Interests: None. (© The Author(s) 2024.)
Databáze:	MEDLINE
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