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A majority of patients are comfortable with sharing their biospecimens and EHR data for research purposes, according to a new study published in JAMA Network Open; however, most patients want to restrict the sharing of at least one part of their medical record. Patients also exhibited preferences as to the institutions with whom their data and biospecimens were shared.
Certain legislation covering the use of EHR data and biospecimens allow patient data to be shared for research purposes, either in identifiable or de-identified form, unless the patient explicitly opts out of data sharing. The researchers note that this all or nothing approach is problematic, as many patients are concerned about sharing certain types of information due to fears about secondary uses of their data.
The researchers investigated the attitudes of 1,246 adults in the United States about a tiered consent approach to EHR record sharing. This approach splits an individual’s medical records into smaller parts, which allows patients to consent to sharing certain parts of their medical records and restricting sharing on others. The researchers also investigated attitudes toward sharing EHR or partial EHR data with different types of researchers.
A small percentage of patients – 46 individuals (3.7%) – declined to share their EHR data with their own healthcare provider, 352 individuals (28.3%) declined sharing their data with nonprofit organizations, and 590 (47.4%) declined to share their data with for-profit organizations. 291 individuals (23.4%) said they would be happy to share data with any researcher.
Overall, 909 patients (72.9%) were willing to share their EHR data and biospecimens selectively and, in general, there was a preference for sharing data within the organization where patients received medical care, followed by nonprofit healthcare organizations. Patients were least willing to share data with for-profit organizations. The majority of patients said at least one item on their medical record should not be shared with others for research purposes.
“In a system in which people can choose where to receive care, it seems plausible that a patient selects to receive care in the most trusted institution, and this trust may more easily transfer to the care of data and biospecimens,” wrote the researchers.
By giving patients the choice of sharing subsets of their EHR data, patients would appear to be more open to sharing their records for research purposes. The researchers also found that there was a marked difference in the number of patients willing to share their data based on the method of obtaining consent. When opt-in forms were used, patients were willing to share fewer data items than when opt-out forms were used.
“We found that a tiered-permission system that allowed for specific removal of data items or categories of data could be implemented in practice and that it mattered to participants with whom the EHR data and biospecimens would be shared because there were differences in sharing preferences according to the researchers’ affiliations,” said the researchers.