NorthPoint Domain

Most Consumers Willing to Share Personal Data


Privacy and safety must be respected, however

Consumers are generally willing to share information from their personal health records so long as they have the power to select the conditions, according to a study published in the June issue of the Journal of Medical Internet Research.

Access to personal health records could benefit public health research greatly in part by fostering improved understanding of health outcomes, barriers to care and adherence, follow-up, and follow-through. The recently established Health Information Technology for Economic and Clinical Health (HITECH) Act has as its goal harnessing digital technology to “prevent and treat illnesses and to improve health” and to aid in the collection and analysis of health information. However, little was known about individuals‘ attitudes toward sharing. The authors of the current study thus surveyed a group of people in an urban area of the northeastern United States.

Using self-report survey, qualitative questionnaire, semi-structured focus group, and one-on-one interview, the authors asked 181 early adopters of a personally controlled health record about their willingness and interest in sharing personal information. Participants used the health record and also sat in on a demonstration session in which they interacted with a live system that was not populated with their own data. There were three subject groups: an employee and student population, a community-based health maintenance organization population, and a retiree and health advocacy mailing list population. Most participants reported their health as good to excellent, high levels of education, moderately high levels of income, female gender, and white race.

Analyses revealed high levels of willingness to share personal health information for disease monitoring, evaluation, and needs assessment, but also a strong concern for privacy and safety issues. Ninety percent of subjects reported that strict anonymity would increase the likelihood that they would share; 71 percent said guaranteeing privacy but not anonymity would encourage them to share; and 79 percent said a way to view who accessed their information would increase their willingness. Restricting the use of their information to health research and to trusted intermediaries were also expressed as important prerequisites to sharing. Greater preference for an “opt-in” versus “opt-out” default mode was observed.

The authors concluded that more research in diverse populations is necessary, but that “allowing users to select their preferred conditions for sharing may be vital to supporting sharing and fostering trust as may be safety monitoring mechanisms.”

Source: Weitzman ER, Kaci L, Mandl KD. 2010. Sharing medical data for health research: the early personal health record experience. Journal of Medical Internet Research 12(2):e14.