Email updates

Keep up to date with the latest news and content from BMC Medical Informatics and Decision Making and BioMed Central.

Open Access Research article

Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users

Elissa R Weitzman124*, Skyler Kelemen1, Liljana Kaci1 and Kenneth D Mandl1345

Author Affiliations

1 Children’s Hospital Informatics Program, Children’s Hospital Boston, Boston, MA, USA

2 Division of Adolescent Medicine, Children’s Hospital Boston, Boston, MA, USA

3 Division of Emergency Medicine, Children’s Hospital Boston, Boston, MA, USA

4 Department of Pediatrics, Harvard Medical School, Boston, MA, USA

5 Manton Center for Orphan Disease Research, Children’s Hospital Boston, Boston, MA, USA

For all author emails, please log on.

BMC Medical Informatics and Decision Making 2012, 12:39  doi:10.1186/1472-6947-12-39

Published: 22 May 2012

Abstract

Background

Data stored in personally controlled health records (PCHRs) may hold value for clinicians and public health entities, if patients and their families will share them. We sought to characterize consumer willingness and unwillingness (reticence) to share PCHR data across health topics, and with different stakeholders, to advance understanding of this issue.

Methods

Cross-sectional 2009 Web survey of repeat PCHR users who were patients over 18 years old or parents of patients, to assess willingness to share their PCHR data with an-out-of-hospital provider to support care, and the state/local public health authority to support monitoring; the odds of reticence to share PCHR information about ten exemplary health topics were estimated using a repeated measures approach.

Results

Of 261 respondents (56% response rate), more reported they would share all information with the state/local public health authority (63.3%) than with an out-of-hospital provider (54.1%) (OR 1.5, 95% CI 1.1, 1.9; p = .005); few would not share any information with these parties (respectively, 7.9% and 5.2%). For public health sharing, reticence was higher for most topics compared to contagious illness (ORs 4.9 to 1.4, all p-values < .05), and reflected concern about anonymity (47.2%), government insensitivity (41.5%), discrimination (24%). For provider sharing, reticence was higher for all topics compared to contagious illness (ORs 6.3 to 1.5, all p-values < .05), and reflected concern for relevance (52%), disclosure to insurance (47.6%) and/or family (20.5%).

Conclusions

Pediatric patients and their families are often willing to share electronic health information to support health improvement, but remain cautious. Robust trust models for PCHR sharing are needed.