Most Patients Are Willing to Share Their EHR Data for Research, But Not Everything

A new research study published in JAMA Network Open revealed that many patients are okay with sharing their EHR data and biospecimens for research purposes; however, the majority of patients would like to limit the information shared to at least just one part of their healthcare record. Patients likewise showed preferences regarding the organizations with whom they would share their information and biospecimens.

A number of legislations covering EHR data and biospecimens usage permit the sharing of patient data for research requirements, both in an identifiable or de-identified format, except if the patient clearly chooses not to share data. The researchers remark that there is a problem in this all or nothing approach, as a lot of patients do not agree with sharing some types of data because of concerns on secondary uses of their information.

The researchers looked into the behavior of 1,246 people in the United States regarding a tiered consent approach to sharing EHR records. This approach divides a person’s medical records into smaller portions, allowing patients to permit the sharing of particular components of their medical records and limiting the sharing of others. The researchers likewise investigated behavior toward sharing EHR or part of the EHR data with various kinds of researchers.

3.7% of patients or 46 persons did not agree to share their information with their own medical provider, 352 persons or 28.3% did not agree to share their information with nonprofit institutions, and 590 persons or 47.4% did not agree to share their information with for-profit institutions. 291 persons or 23.4% said they would happily share their information with any researcher.

A total of 909 patients or 72.9% were ready to share their EHR information and biospecimens selectively. On the whole, there was a willingness to share data within the organization where the patients obtained their health care, followed by nonprofit healthcare institutions. Patients were the least inclined to share information with for-profit institutions. Most patients said at least one thing on their healthcare record shouldn’t be shared even for research purposes.

People pick their most trusted institution to receive health care and they may more readily share their data and biospecimens. By allowing patients to choose what subsets of their EHR data to share, they would seem to be more amenable to sharing their information for research. The researchers likewise found a noticeable difference in how many patients are willing to share their information based on the process of getting consent. When using opt-in forms, patients were eager to share fewer data items compared to when using opt-out forms.

The researchers found that a tiered-permission system which allowed for distinct removal of data items or data categories may be applied in practice. The study participants were concerned with whom to share EHR data and biospecimens because sharing preferences differed according to the affiliations of the researchers.

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Christine Garcia is the staff writer on Calculated HIPAA. Christine has several years experience in writing about healthcare sector issues with a focus on the compliance and cybersecurity issues. Christine has developed in-depth knowledge of HIPAA regulations. You can contact Christine at [email protected]. You can follow Christine on Twitter at