Contemporary Views of Research Participant Willingness to Participate and Share Digital Data in Biomedical Research
Authors: Abhishek Pratap, Ryan Allred, Jaden Duffy, Donovan Rivera, Heather Sophia Lee, Brenna N. Renn, Patricia A. Areán
Journal: JAMA Network Open (2019)

<h3>Importance</h3> Using social media to recruit participants is a common and cost-effective practice. Willingness to participate (WTP) in biomedical research is a function of trust in the scientific team, which is closely tied to the source of funding and institutional connections. <h3>Objective</h3> To determine whether WTP and willingness to share social media data are associated with the type of research team and online recruitment platform. <h3>Design, Setting, and Participants</h3> This mixed-methods longitudinal survey and qualitative study was conducted over 2 points (T1 and T2) using Amazon's Mechanical Turk (MTurk) platform. Participants were US adults aged 18 years or older who use at least 1 social media platform. Recruitment was stratified to match race/ethnicity proportions of the 2010 US Census. The volunteer sample consisted of 914 participants at T1, and 655 participants completed the follow-up survey 5 months later (T2). <h3>Main Outcomes and Measures</h3> Outcomes were (1) past experience with online research and sharing social media data for research; (2) WTP in research advertised online; (3) WTP in a study sponsored by a pharmaceutical company, a university, or a federal agency; and (4) willingness to share social media data. Opinions were solicited regarding the European Union's General Data Protection Regulation statute, which came into effect between T1 and T2. <h3>Results</h3> Of 914 participants completing the first survey (T1), 604 (66.1%) were aged 18 to 39 years and 494 (54.0%) were female. Of these, 655 participants (71.7%) responded at T2. While 680 participants (74.4%) indicated WTP in biomedical research, only 454 (49.3%) were willing to share their social media data. Participants were significantly less likely to participate in federally sponsored (odds ratio [OR], 0.58; 95% CI, 0.51-0.64;<i>P</i> &lt; .001) or pharmaceutical company (OR, 0.59; 95% CI, 0.53-0.66;<i>P</i> &lt; .001) research than university-led studies. They were also less likely to share their social medial data for federal (OR, 0.65; 95% CI, 0.58-0.72;<i>P</i> &lt; .001) or pharmaceutical company (OR, 0.50; 95% CI, 0.44-0.56;<i>P</i> &lt; .001) research compared with academic studies. Willingness to participate in pharmaceutical company–led research decreased 11.89% from T1 to T2 (OR for T2, 0.62; 95% CI, 0.54-0.77;<i>P</i> &lt; .001). Reasons for WTP were interest in furthering science, financial incentives, trust in the organization, and data security. While 63.0% of respondents reported seeing new privacy policy emails related to the General Data Protection Regulation law, only 27.1% indicated this positively influenced their WTP. Thematic analysis of responses indicated that WTP may improve with stronger data security measures. <h3>Conclusions and Relevance</h3> This study suggests that researchers may see reduced online research participation and data sharing, particularly for research conducted outside academia.