Patient Consent: A New ApproachPilot to Use Tablets to Educate Patients about HIEs
Four physician group practices in the Buffalo, N.Y., area soon will begin testing the use of a program running on tablet computers to educate patients about health information exchange and then gain their consent for sharing their data.
The clinics in the pilot, which kicks off Oct. 22, are participants in a health information exchange called HEALTHeLINK.
The Office of National Coordinator for Health IT, a unit of the Department of Health and Human Services, announced the "meaningful consent" pilot last March (see: Using Tablets to Obtain Patient Consent).
"We often hear that one of the impediments to using a consent approach is that it is so time-consuming on behalf of the provider," Joy Pritts, chief privacy officer at ONC, said in March. "This is designed to see if we can handle this ... in a more efficient manner. ... The patient has control over how much information they get about consent."
ONC eventually will prepare a report on the pilot project and potentially develop standards for the presentation of patient consent educational information, Pritts said.
During the pilot, which will run about a month, patients will be provided tablets running multi-media, interactive educational material to read while in waiting rooms. The material will explain health data exchange and provide information about privacy and security of their data. Patient will then be able to use the tablet to give their consent for their data to be exchanged via the HIE. That consent will then be electronically transmitted to HEALTHeLINK.
"We broke up the educational material by topic to allow patients to review the material they deem most essential to their understanding of health information exchange," says Sarah Koenig, marketing coordinator for App Design, the vendor that's providing technology for the pilot. The material takes between 5 and 20 minutes to complete, depending upon how much detail patients choose to review.Patients will also be given a short survey about the material to see if they've understood it and to provide feedback on whether the information was complete or clear enough.
Patient Consent Models
Health information exchange organizers throughout the country are grappling with the issue of how to educate patients about data exchange and then gain their consent to share their information (see: HIE Models: Security Pros and Cons).
In New York state, patients must opt in before their health data can be shared among providers via an HIE. In many other states, patients are automatically enrolled for having their data exchanged via HIEs unless they opt out.
In addition, a handful of data segmentation projects are testing how to enable patients to restrict sharing of certain portions of their records, such as information on mental health issues or substance abuse.
Regardless of whether an opt-in or opt-out model is used, ONC's Privacy and Security Tiger Team, in a recommendation endorsed by ONC's Health IT Policy Committee, stressed the importance of educating patients about data exchange as well as their right to choose whether to participate, labeling the approach "meaningful consent."
Goals of the Pilot
In a recent blog, Kathryn Marchesini, ONC e-consent project lead, said the pilot is designed "to help identify some innovative resources and sample educational materials to help healthcare providers and HIEs ensure any choices patients make with respect to sharing their health information are, indeed, meaningful."
Educating patients about information exchange "ensures patients understand how and with whom their provider can share their information and the impact of their choices," she added.
Other goals of the pilot, Marchesini said, are to identify what information patients believe they need to make an informed decision and assess patients' knowledge gained and their satisfaction with the educational material and electronic delivery method.
The HEALTHeLINK HIE, organized as a not-for-profit consortium, includes: The Catholic Health System, The Erie County Medical Center Corporation, BlueCross BlueShield of Western New York, Independent Health Association, Kaleida Health, Roswell Park Cancer Institute and Univera Healthcare. The HIE, which has the ability to serve providers in eight counties, was created through a $3.5 million grant from New York State's Health NY initiative.