Are Patients With Cancer Less Willing to Share Their Health Information? Privacy, Sensitivity, and Social Purpose

Purpose: Growing use of electronic health information increases opportunities to build population cancer databases for research and care delivery. Understanding patient views on reuse of health information is essential to shape privacy policies and build trust in these initiatives.

Methods: We randomly assigned nationally representative participants (N = 3,336) with and without prior cancer to six of 18 scenarios describing different uses of electronic health information. The scenarios varied the user, use, and sensitivity of the information. Participants rated each scenario on a scale of 1 to 10 assessing their willingness to share their electronic health information. We used conjoint analysis to measure the relative importance of each attribute (ie, use, user, and sensitivity).

Results: Participants with and without a prior diagnosis of cancer had a similar willingness to share health information (0.27; P = .42). Both cancer and noncancer participants rated the purpose of information use as the most important factor (importance weights, 67.1% and 45.6%, respectively). For cancer participants, the sensitivity of the information was more important (importance weights, 29.8% v 1.2%). However, cancer participants were more willing to share their health information when the information included more sensitive genetic information (0.48; P = .015). Cancer and noncancer respondents rated uses and users similarly.

Conclusion: The information sharing preferences of participants with and without a prior diagnosis of cancer were driven mainly by the purpose of information reuse. Although conventional thinking suggests patients with cancer might be less willing to share their health information, we found participants with cancer were more willing to share their inherited genetic information.