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Jerris Heaton

Patients Don’t Mind Sharing EHR Data for Research, But Not Their Entire Medical Record

November 26, 2019

EHR 3 Minute Read

In the past decade, electronic health records, or EHRs, have gone from being a tool that only a select few healthcare organizations use to near-universal adoption. According to the CDC, as of 2017, over 85% of office-based physicians use some sort of EHR, and around 80% have adopted a certified EHR. As a result, modern patients have increasingly accepted the idea that their medical history, including notes, imaging, lab results, and medications, can be easily accessed by their doctor via computer. But this increased availability also raises concerns in patients’ minds about exactly who else may be accessing their records.

What Patients are Willing to Share and with Whom

According to a recent survey study, about two-thirds of the patients participating indicated they are comfortable with sharing their EHR data and biospecimens for research purposes. However, the study also found there were differences in sharing preferences based on the researchers’ affiliations. Of the 1,246 study participants, just 3.7% would decline to share their information with their own healthcare providing institution. When it came to sharing with other parties, however, nearly 28.3% would decline to share their information with nonprofit institutions, and almost 47% would decline sharing their data with for-profit institutions.

Patients are also concerned with what data would be shared. The researchers sought to determine patients’ attitudes toward an approach that uses a consent form and allows partial use of the EHR. The vast majority of the patients—about 73%—were willing to share selectively. The study also found that most participants indicated at least one item they preferred not to be shared.

When it Comes to Sharing Their Information, Website Security is a Concern for Patients

Patients are not only concerned with whom their personal data is shared, but who will have access. A Pew Research survey found that convenience is an important factor. By a two-to-one margin (52% to 26%), Americans indicated they would accept a secure health information website that could be used to access their own health records and make scheduling appointments with their physician easier. However, others indicated their view would be contingent on who could access their data as well as how vulnerable they feel the website is to hacking. Many were also concerned that sharing their records could leave them open to third-party marketing.

Physicians Need to Make Clear to Patients What Data They May Be Sharing

When using EHRs, physicians need to inform patients as to what information they will be sharing, what the data will be used for, and the benefits to them, if any. Researchers found that participants were willing to share fewer data items when using an opt-in form versus an opt-out form. However, the complexity of the form had little bearing on the results—a simple form layout that displays data categories was associated with sharing preferences that were equivalent to those elicited from a detailed form layout that displays specific data items. The results also suggest that asking patients which particular data items they want to share and with whom is the best way to facilitate data sharing and research.

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