While EHRs and HIEs are being touted as necessary tools for the improvement of the nation’s healthcare system, some Californians believe that the use of HIEs in fact worsen patient data privacy, according to a recent study.
Approximately 40 percent of respondents think HIE worsens privacy while nearly one-third think it improves privacy and 42.5 percent believe it worsens security, according to a study published in the Journal of the American Medical Informatics Association. The study interviewed 800 adult California residents and conducted by University of California, Davis and University of California San Diego researchers.Image may be NSFW.
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In terms of EHR privacy and security, the study showed that more than half of respondents believe EHRs worsen privacy, while just 22 percent said it improves privacy. Approximately 43 percent stated that EHRs worsen security.
For HIE consent options, 23 percent stated that they wanted opt-in alone, which requires that individuals expressly agree to data sharing, while 11 percent selected opt-out to prohibit access. Allowing access to data only in an emergency – a “break the glass” option – was chosen by 66 percent of respondents.
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The report also discussed patients’ views on information sharing for research purposes. Half of respondents strongly agreed or somewhat agreed with the statement that societal benefit was more important than privacy. However, approximately 70 percent strongly or somewhat agreed that an individual’s right to control the use of their medical information is more important than the possible benefits of medical research.
That being said, the authors stated that they also found that respondents were more likely to agree to share de-identified information for research than to share identified information for healthcare.
“This suggests that individuals want control over electronic access to health information,” the report’s authors wrote. “They overwhelmingly believe it is important to be asked permission for both research and healthcare uses but there are greater differences in beliefs about consent.”
Over three-quarters of those surveyed said that privacy and security were very important when sharing unidentified data through an electronic research network. Moreover, approximately 67 percent of respondents said that being able to trust the organization was very important, while just over half stated that seeing their information beforehand was a top priority.
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Nearly 45 percent of respondents said that permission should be required to access their information electronically for research purposes. One-third stated that medical researchers should get their general permission and also periodically reach out to ensure they still agree to their data being shared.
HIPAA regulations, as well as individual state compliance laws, might not consumer concerns about data sharing, the researchers explained. Therefore, HIEs should consider consumers’ preferences in the construction and operation of their networks. Moreover, creating and implementing policies that address consumer concerns may improve their acceptance and support of distributed research networks.
“Electronic networks for healthcare and research have the potential to enhance knowledge about cost effective, high quality patient-centered care and the efficient conduct of clinical research,” the authors stated. “Understanding of views and preferences regarding electronic sharing of health information, and in particular, the important variation in views between individuals, is a prerequisite to the effective design of network governance and acceptance and trust of the network by the public.”
California has been working to improve patient data privacy, along with healthcare data security in general. Last year, California Attorney General Kamala Harris released the state’s second annual data breach report, which showed that 18.5 million Californians potentially had their personal information put at risk from the 167 data breaches that hit California.
“Data breaches pose a serious threat to the privacy, finances and personal security of California consumers,” Attorney General Harris said in a statement. “The fight against these kind of cybercrimes requires the use of innovative strategies by government and the private sector to protect our state’s consumers and businesses. I strongly encourage more use of encryption to significantly reduce the risk of data breaches.”
The report also found that 55 percent of California’s healthcare breaches involved Social Security numbers. However, health information was the most common type of data attacked, representing 75 percent of healthcare data breaches.
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