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

BMC Medical Informatics and Decision Making

Research Article

Liljana Kaci¹  Skyler Kelemen¹  Elissa R Weitzman²  Kenneth D Mandl³ 

[1] Children’s Hospital Informatics Program, Children’s Hospital Boston, Boston, MA, USA;Children’s Hospital Informatics Program, Children’s Hospital Boston, Boston, MA, USA;Division of Adolescent Medicine, Children’s Hospital Boston, Boston, MA, USA;Department of Pediatrics, Harvard Medical School, Boston, MA, USA;Children’s Hospital Informatics Program, Children’s Hospital Boston, Boston, MA, USA;Division of Emergency Medicine, Children’s Hospital Boston, Boston, MA, USA;Department of Pediatrics, Harvard Medical School, Boston, MA, USA;Manton Center for Orphan Disease Research, Children’s Hospital Boston, Boston, MA, USA;

关键词: Source Population;    Personal Health Record;    Health Topic;    Public Health Authority;    Personal Health Information;   

DOI  :  10.1186/1472-6947-12-39

 received in 2011-11-23, accepted in 2012-05-22,  发布年份 2012

来源: Springer

【 摘 要 】

BackgroundData 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 un willingness (reticence) to share PCHR data across health topics, and with different stakeholders, to advance understanding of this issue.MethodsCross-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.ResultsOf 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%).ConclusionsPediatric 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.

【 授权许可】

CC BY   
© Weitzman et al.; licensee BioMed Central Ltd. 2012