Accepted for/Published in: Journal of Participatory Medicine
Date Submitted: Mar 19, 2019
Open Peer Review Period: Mar 22, 2019 - Apr 25, 2019
Date Accepted: Feb 21, 2020
(closed for review but you can still tweet)
Non-Hispanic White Mothers’ Willingness to Share Personal Health Data with Researchers: Survey Results from an Opt-in Panel
The advances in information communication technology have allowed researchers to collect data continuously through mobile sources on the targeted populations. However, research has shown that different population exhibit different data sharing preferences. Socioeconomic status, type, and source of devices used to collect these data are all factors that shape these preferences.
In this study, we aim to assess women, in particular, white mothers’, data sharing preferences.
We used a cross-sectional sample of white mothers (N=622) of healthy children. We administered an online survey questionnaire consisting of 51 questions, of which we selected 15 questions for further analysis. These questions pertain to the attitudes and belief in data sharing, internet use and interest in future research, and sociodemographic and health questions on caregivers and their children.
The results showed that mothers preferred to keep their data anonymous (70%) and use patient portals (63%). However, mothers were less willing to share their medical record data (36%) and their GPS location with researchers (40%), whereas, the majority of these mothers were more willing to share their data provided through online surveys (81%) or collected through their mobile phone (68%). Mothers’ motivations and concerns regarding sharing their data were statistically associated with their preferences to keep their data anonymous, use of patient portals, and their willingness-to-share their data with researchers.
Our findings suggest that mothers’ concerns outweighed more on their decision to share their patient health data. We also found that mothers’ access and use of a patient portal did not necessarily translate into their willingness to disclose their medical record data. In fact, the majority of these mothers were concerned about sharing their medical record and GPS location data.
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