Returning study results to research participants: Data access, format, and sharing preferences. (February 2023)

• Record Type: Journal Article
• Authors: Mangal, Sabrina; Niño de Rivera, Stephanie; Choi, Jacky; Reading Turchioe, Meghan; Benda, Natalie; Sharko, Marianne; Myers, Annie; Goyal, Parag; Dugdale, Lydia; Masterson Creber, Ruth
• Is Part Of: International journal of medical informatics. Volume 170(2023)
• Publication Date: 2023-02
• Subjects: Transparency -- Trust -- Patient-reported outcomes -- Health informatics -- Recruitment; Medical informatics -- Periodicals; Information science -- Periodicals; Computers -- Periodicals; Medical technology -- Periodicals; Medical Informatics -- Periodicals; Technology, Medical -- Periodicals; Computers; Information science; Medical informatics; Medical technology; Electronic journals; Periodicals; Electronic journals; 610.285
• DOI: 10.1016/j.ijmedinf.2022.104955
• Languages: English
• ISSNs: 1386-5056

Abstract

Highlights: Respondents want their data back through combinations of email, website, and paper. Format preferences for data vary by age, education, numeracy, and health literacy. Respondents see access to their personal data as a right and expectation. Respondents want to use their data for their own reference or to manage health. Abstract: Introduction: Research participants have a growing expectation for transparency with their collected information; however, there is little guidance on participant preferences for receiving health information and how researchers should return this information to participants. Methods: We conducted a cross-sectional online survey with a representative sample of 502 participants in the United States. Participants were asked about their preferences for receiving, sharing, and the formatting of health information collected for research purposes. Results: Most participants wanted their health information returned (84 %) to use it for their own knowledge and to manage their own health. Email was the most preferred format for receiving health data (67 %), followed by online website (44 %), and/or paper copy (32 %). Data format preferences varied by age, education, financial resources, subjective numeracy, and health literacy. Around one third of Generation Z (25 %), Millennials (30 %), and Generation X (29 %) participants preferred to receive their health information with a mobile app. In contrast, very few Baby Boomers (12 %) and none from the Silent Generation preferred the mobile app format. Having a paper copy of the data was preferred by 38 % of participants without a college degree compared to those with a college degree. Preferences were highest for sharing all health information with doctors and nurses (77 %), and some information with friends and family (66 %). Conclusion: Study findings support returning research information to participants in multiple formats, including email, online websites, and paper copy. Preferences for whom to share information with varied by stakeholders and by sociodemographic characteristics. Researchers should offer multiple formats to participants and tailor data sharing options to participants' preferences. Future research should further explore combinations of individual characteristics that may further influence data sharing and format preferences.