BMC Med Inform Decis Mak - Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users.

Tópicos

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Resumo

CKGROUND: 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.

Resumo Limpo

ckground data store person control health record pchrs may hold valu clinician public health entiti patient famili will share sought character consum willing unwilling retic share pchr data across health topic differ stakehold advanc understand issuemethod crosssect web survey repeat pchr user patient year old parent patient assess willing share pchr data anoutofhospit provid support care stateloc public health author support monitor odd retic share pchr inform ten exemplari health topic estim use repeat measur approachresult respond respons rate report share inform stateloc public health author outofhospit provid ci p share inform parti respect public health share retic higher topic compar contagi ill or pvalu reflect concern anonym govern insensit discrimin provid share retic higher topic compar contagi ill or pvalu reflect concern relev disclosur insur andor famili conclus pediatr patient famili often will share electron health inform support health improv remain cautious robust trust model pchr share need

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