Contemporary Views of Research Participant Willingness to Participate and Share Digital Data in Biomedical Research
Contemporary Views of Research Participant Willingness to Participate and Share Digital Data in Biomedical Research
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DOI：
10.1001/jamanetworkopen.2019.15717
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发表时间：
2019-11-01
影响因子：
13.8
通讯作者：
Arean, Patricia A.
中科院分区：
文献类型：
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作者：
Pratap, Abhishek;Allred, Ryan;Arean, Patricia A.
利用社交媒体招募参与者是一种常见且具有成本效益的做法。生物医学研究中的参与意愿（Willingness to participate，WTP）是对科研团队信任的一个函数，与科研资金来源和机构关系密切相关。目的探讨研究团队类型和在线招聘平台是否与参与意愿和分享社会媒体数据的意愿相关。这项混合方法的纵向调查和定性研究使用亚马逊的土耳其机械（MTurk）平台在2个点（T1和T2）进行。参与者是18岁或以上的美国成年人，他们至少使用一个社交媒体平台。招募分层，以匹配2010年美国人口普查的种族/民族比例。主要结果和测量结果包括（1）过去在线研究和分享研究社交媒体数据的经验;（2）在线广告研究的支付意愿;（3）由制药公司、大学或联邦机构赞助的研究的支付意愿;（4）研究者的支付意愿。（4）愿意分享社交媒体数据。在T1和T2之间生效的欧盟通用数据保护条例法规征求意见。结果在完成第一次调查（T1）的914名参与者中，604名（66.1%）年龄在18至39岁之间，494名（54.0%）为女性。其中，655名参与者（71.7%）在T2时做出了应答。虽然680名参与者（74.4%）表示生物医学研究中的支付意愿，但只有454名（49.3%）愿意分享他们的社交媒体数据。参与者参加联邦资助的研究的可能性显著降低（比值比[OR]，0.58; 95%CI，0.51-0.64; P
IMPORTANCE 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.OBJECTIVE To determine whether WTP and willingness to share social media data are associated with the type of research team and online recruitment platform.DESIGN, SETTING, AND PARTICIPANTS 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).MAIN OUTCOMES AND MEASURES 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.RESULTS 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; P