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

Abstract

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 unwillingness (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.

Potentials and Challenges of the Health Data Cooperative Model

“…People highly value data anonymity because it might reduce the risk of employment and insurance discrimination. A subsequent study by Weitzman et al [17] identifies that individuals also value unlimited access to their personal data. As a result of citizen empowerment, it is likely that people become actively involved in healthcare.…”

“…Firstly, citizens' knowledge about the options of sharing their EPR is not up to date. Weitzman et al [17] find that less than one-fourth (22.6%) of the study participants were aware that they could share parts of their EPR rather than their entire medical data file. Secondly, citizens are not always willing to provide their personal medical information to third parties.…”

“…Research proposes that the resilience towards the sharing of personal health information is due to a lack of trust in a public agency's data management, distrust in appropriate data utilization, concern about unauthorized data revelation, insufficient transparency, and fear of anonymity breach. Citizens are afraid that the insensitive handling of their data might increase the risk of stigmatization or discrimination [17]. Resistance towards the sharing of health information poses a threat towards the HDC model, since the principle of data exchange is fundamental to the concept.…”

“…Members could provide their health information for research, surveillance activities, needs assessments, planning, evaluation, and other study purposes [4,17]. Whiddett et al [18] identify that the willingness to share personal health information increases when individuals have control over their own data and the information is anonymous.…”

GPs’ approaches to documenting stigmatising information: a qualitative study

“…[1][2][3] Patients with potentially stigmatising conditions are often concerned that documented information could be used against them, do not want to share the information with family members, and regard the sharing of information between medical providers without prior consent as a breach of confidentiality. [3][4][5][6][7][8] Yet, lack of relevant information in the medical record may interfere with continuity of care and, as a result, reduce quality of care over time. 9,10 This dilemma is particularly poignant in primary care given that GPs serve as the central point for a patient's care and therefore play an important role in facilitating continuity.…”