Why providers should gather details on patients' data sharing preferences

Gathering details on patient preferences when it comes to their personal data is the first step providers must take to ensuring they build "the relationship needed to support lifelong data use and sharing," Carolyn Peterson, senior regulatory specialist at Mayo Clinic, writes in a viewpoint at eGEMs (Generating Evidence & Methods to improve patient outcomes).

Patients' decisions on permission seeking, data de-identification, notification of data use and ongoing engagement should be recorded in their electronic health record; what's more, patients also should receive a hard copy or e-copy of that information, Peterson writes.

Such information should be gathered during the first or second visit with a provider, but can also be relayed if the patient decides he or she wants to build a stronger relationship with the provider.

"This clear and present effort to partner with patients rather than act unilaterally on their behalf strengthens the dynamic of patient engagement that will underlie provider-patient relationship in years to come," she writes.

A survey from the Officer of the National Coordinator for Health IT from 2012 to 2014 found that patients are growing more comfortable with EHRs as well as sharing of their data. At least seven in 10 individuals supported electronically exchanging their health records, despite potential privacy or security concerns.

However, to gather patient data decision information, workflows must be adjusted, Peterson says, with the biggest challenges being attitude and culture.

Patient access to their data also is growing. In January, the Health and Human Services Department released new guidance on the HIPAA Privacy Rule in an effort to ensure consumers are able to rightfully access their health information.

To learn more:
- here's the viewpoint (.pdf)