Sharing data in EHR systems without consumer preferences may lead to information withholding
An unintended, if not wholly unexpected, consequence of the health care industry’s heavily incentivized move towards use of electronic health records and sharing data contained in those records appears to be a greater likelihood that individuals will withhold information from their doctors or other medical providers to prevent the possibility of the information being shared with others. According to the results of a study released on Monday by the California HealthCare Foundation on consumers and health information technology, about one in six respondents said they would conceal information from their doctors if their medical data was to be stored in an EHR system that enabled health data sharing with entities beyond the provider, and another third would consider concealing information. The study also found that when individuals begin using personal health records (PHR), they become more involved in their own health care and know more about their own health. National adoption rates for PHRs remain quite low overall, but have shown tremendous growth in the past couple of years, a trend which is generally expected to continue in parallel with the anticipated rise in health care industry penetration of EHR systems.
The lingering general concerns over patient privacy are hardly surprising, particularly given the lack of attention given to date on enabling individuals to assert more control over the use and dissemination of their personal health information. Interestingly, the CHCF study found that while PHR users are concerned about the privacy and security of their data stored in PHR systems, they are not so worried about privacy as to believe that privacy issues should stand in the way of evaluating and realizing some of the anticipated benefits of health IT. Privacy advocates continue to stress the importance of adding support for consumer preferences and, especially, soliciting and managing consent for disclosure of personal health information either based on the content of the data or the use for which it is being disclosed. Too much discretion with respect to health record disclosure can have the same result as withholding information from doctors: when electronic health records are consulted for use in clinical care settings, the providers doing the treatment may be making decisions based on incomplete medical information. This situation subverts the key health information sharing objectives such as improving the quality of care or reducing negative outcomes due to errors. Health information exchange providers, including government entities, will need to continue to balance health care and public health outcomes with individual expectations of privacy and support for privacy principles such as individual choice and disclosure limitations.