Why patients are picky about what health data they’re willing to share
In the past decade, electronic health records have gone from being a tool that only a select few healthcare organizations use to near-universal adoption.
According to the Centers for Disease Control and Prevention, as of 2017, more than 85 percent of office-based physicians use some sort of EHR, and about 80 percent 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.
However, this increased availability also raises concerns in patients’ minds about exactly who else may be accessing their records.
According to a recent study, about two-thirds of surveyed patients 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, only 3.7 percent would decline to share their information with their own healthcare providing institution. When it came to sharing with other parties, however, nearly 28.3 percent would decline to share their information with nonprofit institutions, and almost 47 percent said they didn’t want to share their data with for-profit institutions.
Patients also are concerned with what data would be shared. The researchers sought to determine patients’ attitudes toward an approach that uses a consent form and enables partial use of the EHR. The vast majority of the patients—about 73 percent—were willing to share selectively. The study also found that most participants indicated at least one item they preferred not to share.
Patients are not only concerned with whom their personal data is shared, but also with who will have access. A Pew Research survey found that convenience is an important factor.
By a two-to-one margin (52 percent to 26 percent), Americans indicated they would accept a secure health information website that could be used to access their own health records and facilitate the process of scheduling appointments with physician. 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.
When using EHRs, physicians need to inform patients about 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 vs. 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.