Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users
Published Date:May 22 2012
Source:BMC Med Inform Decis Mak. 2012; 12:39.
Health Knowledge, Attitudes, Practice
Health Records, Personal
Health Status Indicators
Patient Acceptance Of Health Care
Primary Health Care
Public Health Informatics
Pubmed Central ID:PMC3403895
Funding:1R01LM011185-01/LM/NLM NIH HHS/United States
1U54RR025224-01/RR/NCRR NIH HHS/United States
P01HK000016/HK/PHITPO CDC HHS/United States
P01HK000088-01/HK/PHITPO CDC HHS/United States
R01 LM011185/LM/NLM NIH HHS/United States
R21 AA016638-01A1/AA/NIAAA NIH HHS/United States
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.
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.
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%).
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.
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