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

Details

• Alternative Title:
  BMC Med Inform Decis Mak
• Personal Author:
  Weitzman, Elissa R ; Kelemen, Skyler ; Kaci, Liljana ; Mandl, Kenneth D
• Description:
  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.
  
  
• Subjects:
  Adolescent Adult Cross-Sectional Studies Family Characteristics Female Health Knowledge, Attitudes, Practice Health Records, Personal Health Status Indicators Humans Income Information Dissemination Male Parents Patient Acceptance Of Health Care Personal Autonomy Primary Health Care Public Health Informatics Quality Improvement Self Report Social Participation Young Adult

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• Source:
  BMC Med Inform Decis Mak. 2012; 12:39.
• Pubmed ID:
  22616619
• Pubmed Central ID:
  PMC3403895
• Document Type:
  Journal Article
• 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
• Place as Subject:
  Boston, MA
• Volume:
  12
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha256:6609c5ae03c373af34aa214a48b8b3e8999280435ee3d8859a1426fbba7ad2b2
• Download URL:
  https://stacks.cdc.gov/view/cdc/22700/cdc_22700_DS1.pdf
• File Type:
  [PDF - 1.57 MB ]