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

Weitzman ER, Kelemen S, Kaci L, Mandl KD - BMC Med Inform Decis Mak (2012)

Bottom Line: 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.

View Article: PubMed Central - HTML - PubMed

Affiliation: Children's Hospital Informatics Program, Children's Hospital Boston, Boston, MA, USA. elissa.weitzman@childrens.harvard.edu

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.

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Across-topic odds participants are reticent to share different kinds of PCHR information with an outside provider, using contagious illness as the reference category.
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Figure 3: Across-topic odds participants are reticent to share different kinds of PCHR information with an outside provider, using contagious illness as the reference category.

Mentions: When asked to characterize willingness to share PCHR information with an outside provider, reticence was higher for all exemplary health topics compared to contagious illness (Figure 3). For example, respondents were 6.3 times more likely to report reticence to share information about money than contagious illness with an outside provider (p < .0001). For all topics assessed, willingness to share information with an outside provider was not associated with patient’s age, health status, number of children in household, or race. Reporting an income of $100,000 or lower, and reporting an income at all (versus not providing information about one’s income) were both positively associated with willingness to share health information for multiple health topics (Figure 4).


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

Weitzman ER, Kelemen S, Kaci L, Mandl KD - BMC Med Inform Decis Mak (2012)

Across-topic odds participants are reticent to share different kinds of PCHR information with an outside provider, using contagious illness as the reference category.
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC3403895&req=5

Figure 3: Across-topic odds participants are reticent to share different kinds of PCHR information with an outside provider, using contagious illness as the reference category.
Mentions: When asked to characterize willingness to share PCHR information with an outside provider, reticence was higher for all exemplary health topics compared to contagious illness (Figure 3). For example, respondents were 6.3 times more likely to report reticence to share information about money than contagious illness with an outside provider (p < .0001). For all topics assessed, willingness to share information with an outside provider was not associated with patient’s age, health status, number of children in household, or race. Reporting an income of $100,000 or lower, and reporting an income at all (versus not providing information about one’s income) were both positively associated with willingness to share health information for multiple health topics (Figure 4).

Bottom Line: 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.

View Article: PubMed Central - HTML - PubMed

Affiliation: Children's Hospital Informatics Program, Children's Hospital Boston, Boston, MA, USA. elissa.weitzman@childrens.harvard.edu

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.

Show MeSH