US Residents’ Preferences for Sharing of Electronic Health Record and Genetic Information: A Discrete Choice Experiment

• Published in: Value in health Vol. 26; no. 9; pp. 1301 - 1307
• Main Authors: Wagner, Abram L., Zhang, Felicia, Ryan, Kerry A., Xing, Eric, Nong, Paige, Kardia, Sharon L.R., Platt, Jodyn
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.09.2023
• Subjects: Confidentiality; Data Collection; Electronic Health Records; genetic data; Humans; Information Dissemination; information sharing; Internal Medicine; Logistic Models; privacy; Public Health; United States; United States; privacy; information sharing; electronic health records; genetic data
• ISSN: 1098-3015; 1524-4733; 1524-4733
• DOI: 10.1016/j.jval.2023.01.015

The aim to this study was to assess preferences for sharing of electronic health record (EHR) and genetic information separately and to examine whether there are different preferences for sharing these 2 types of information. Using a population-based, nationally representative survey of the United States, we conducted a discrete choice experiment in which half of the subjects (N = 790) responded to questions about sharing of genetic information and the other half (N = 751) to questions about sharing of EHR information. Conditional logistic regression models assessed relative preferences across attribute levels of where patients learn about health information sharing, whether shared data are deidentified, whether data are commercialized, how long biospecimens are kept, and what the purpose of sharing the information is. Individuals had strong preferences to share deidentified (vs identified) data (odds ratio [OR] 3.26, 95% confidence interval 2.68-3.96) and to be able to opt out of sharing information with commercial companies (OR 4.26, 95% confidence interval 3.42-5.30). There were no significant differences regarding how long biospecimens are kept or why the data are being shared. Individuals had a stronger preference for opting out of sharing genetic (OR 4.26) versus EHR information (OR 2.64) (P = .002). Hospital systems and regulatory bodies should consider patient preferences for sharing of personal medical records or genetic information. For both genetic and EHR information, patients strongly prefer their data to be deidentified and to have the choice to opt out of sharing information with commercial companies. •There has been a rapid increase in the use of electronic health records, but regulatory bodies and hospital systems do not consider patient preferences in how these data can be shared.•In a survey of US adults, there was a strong preference to allow hospitals to share electronic health record data and genetic data only after deidentification and to let patients opt out of sharing information with commercial companies.•In terms of communicating to patients how their information is shared, the use of a patient portal may be more effective and preferred to other modes of communication.