Given the number of healthcare data breaches that are now being reported it is no surprise that patients are concerned that their sensitive health information will be obtained by cybercriminals or leaked on the Internet. In the first half of 2023, 339 data breaches of 500 or more records had been reported to the HHS’ Office for Civil Rights, and while that represents a year-over-year decline in data breach incidents, more than 41,450,000 healthcare records have been reported as breached in the first 6 months of the year – 10 million less than the number of breached records in all of 2022.
The health information network and interoperability provider, Health Gorilla, recently conducted a study that explored patients’ views on health information privacy and data sharing. 1,213 patients were surveyed who had seen a physician at least once in the previous 12 months. 95% said they were concerned that their medical records would be stolen or leaked online, 70% of whom had extreme or moderate concerns about healthcare data breaches. More than half of respondents expressed concern about the privacy and security protections that companies that handle their health data are putting in place.
The survey also revealed there is widespread mistrust in big tech companies such as Amazon, Google, Microsoft, and Facebook, which are increasingly gaining access to healthcare information through products and services that store healthcare data. 65% of respondents said they do not trust or slightly distrust those companies. That distrust is fueled by data breaches and a lack of transparency about data handling and storage practices, and since big tech firms are heavily reliant on data monetization, there are fears that attempts may be made to commercialize the health data they store or sell that information to third parties.
Patients expressed a greater level of confidence in health data exchange facilitated by government-approved entities. 60% of respondents said they feel significantly more or much more confident about health information exchange facilitated by government-approved entities, although regardless of who is sharing or exchanging health data, there are fears that health data may be used for purposes other than the reasons for which it is being shared.
71% of respondents said they were comfortable with sharing health data with healthcare providers for treatment purposes and 39% were comfortable with health plans accessing their medical records. Only 28% of respondents were comfortable with their health data being shared for operations-related purposes, and only 23% said they were comfortable with government agencies accessing their health data for public health reasons.
One solution to the distrust issue is to share de-identified data – health data that has been stripped of all personal identifiers; however, only 64% of respondents said they were comfortable with deidentified data being shared for research purposes. 13% of individuals said they did not want their health data to be shared for research purposes even if the information contained no personal identifiers.
HIPAA gives patients the right to access their own medical records and 94% of individuals feel that is very or at least somewhat important. 88% of respondents said they had exercised that right and have accessed their medical records at least once in the past 12 months, with 48% saying they accessed their medical records in the past 3 months. While there have been many enforcement actions by the HHS’ Office for Civil Rights over failures to provide access to medical records, the survey suggests patients tend not to have problems accessing their health data. 72% of patients said accessing their records was extremely or somewhat easy, with only 4% of patients finding it extremely difficult.
“The results of this privacy report indicate the urgent need to build trust with patients. As we make progress in setting a universal floor for interoperability, patients must have confidence in the system for healthcare interoperability to work,” added Steve Yaskin, Co-Founder and Chief Executive Officer at Health Gorilla. “The majority of patients don’t believe that vendors are doing enough to protect their health data and have serious concerns about a potential breach of their medical records. Patients must serve as a prominent voice in our national dialogue on health data privacy. The actual solutions will come in many forms, but one thing is abundantly clear — it’s time to act.”
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