Returning study results to research participants: Data access, format, and sharing preferences

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.

Keywords: Health informatics; Patient-reported outcomes; Recruitment; Transparency; Trust.

Figure 1.

Questions asked in the survey to explore data format and sharing preferences

Figure 2.

Participant preferences for format of receiving health information. This figure displays the top ten most common selections and combinations of participant format preferences based on responses to a ‘select all that apply’ question asking: How would you prefer to see the information that the researchers collect about you?.

Figure 3.

Distribution of format preferences by age generation. This figure shows the percentage of respondents who preferred each format, broken down by age. The percentages are based on responses to a ‘select all that apply’ question asking: How would you prefer to see the information that the researchers collect about you?.

Figure 4.

Differences in format preferences to receive collected health information by key sociodemographic characteristics

Figure 5.

Amount of health information participants would share with stakeholder groups