For Shannon Parker, a mom in Salem, Oregon, having access to a Personal Health Record (PHR) updated with her son’s latest health information allows her to put her son at the center of his care – no matter where he’s being treated. This means giving her an electronic tool she can use to coordinate her son’s care for brittle bone disease so she can work with her local pediatrician and a specialist all the way in Omaha, Nebraska.    

Using their PHR, Shannon shares health information with her son’s pediatrician in Oregon after he sees a specialist in Nebraska.  This allows her son to come home and get care based on the entirety of his medical record, which is part of his personal health record.  Then, if she notices any changes in her son’s health from home, she can securely send messages to her son’s specialist in Omaha, often avoiding costly and time-intensive trips out of state.

ONC-Sponsored State Collaboration Enables Personal Health Record Exchange

The exchange capabilities that Shannon uses were enhanced by the pilot implementations coordinated through the PHR Ignite project, an activity of ONC’s State Health Policy Consortium (SHPC), which was established in 2010 to give states resources needed to develop solutions to challenges preventing or impeding health information exchange across state lines. The project [PDF – 506 kb] was initiated under the SHPC to support the use of a variety of PHRs through pilot programs that provided patients access to their health information.  These patients used a non-tethered PHR, which is not connected to a provider’s electronic health record (EHR) system.  The project also provided formative research to support work in consumer engagement through the use of PHRs.

As the work of the SHPC ends this year, we can see that health information is being exchanged between patients and their providers.  Take a look at some of the examples below, watch the video, and read more in the summary reports.

Key Findings:

• MD Anderson Cancer Center conducted data exchange from their in-house patient portal to a non-tethered PHR.  A test patient Continuity of Care Record (CCR) was exchanged via Direct Secure Messaging to the test non-tethered PHR.
• Children’s Medical Center in Dallas exchanged a Continuity of Care Document (CCD) via Direct Secure Messaging to a patient’s non-tethered PHR.  The patients enrolled as part of a pilot program for sickle cell anemia patients.
• The National Association for Trusted Exchange (NATE) conducted bidirectional exchange with pilot participants in Oregon, Alaska and California.  Providers sent data to patients and patients sent data to providers using Direct Secure Messaging.  Data formats exchanged included CCR, CCD, and consolidated clinical document architecture (C-CDA). NATE is launching Phase 2 of the PHR Ignite project by recruiting new contributors and participants.
• The American Medical Informatics Association (AMIA) developed a training and education framework to aid implementation of consumer-mediated exchange.
• HealthInsight in Utah and New Mexico identified PHR functionalities that are most effective and useful to consumers and providers.  They also conducted a pilot to demonstrate bidirectional exchange of biometric data from a patient’s non-tethered PHR to a primary care provider.

Consumers, including moms like Shannon, are using PHRs to share data with health care providers so they can better coordinate care for their families.  As health information technology continues to improve, PHRs will play an important role in helping other patients give providers their whole health care story – resulting in improved care and ultimately, improved health.

Next Steps

The National Institutes of Health released Funding Opportunity Announcements PA-14-180 and PA-14-181 to stimulate research utilizing Mobile Health (mHealth) tools aimed at the improvement of effective patient-provider communication, adherence to treatment and self-management of chronic diseases in underserved populations.  This will build on efforts like PHR Ignite to encourage the development, testing and comparative effectiveness analysis of interventions utilizing mHealth technologies.