ONC Report: Personal Health Records Should be Integrated into HIEs

A report from the Office of the National Coordinator for Health IT (ONC) recommends that patients’ personal health records (PHRs) be implemented in health information exchanges (HIEs).

While electronic health record (EHR) developers have developed patient portals that are “tethered” to a patient’s records in a single organization, there has recently been growing interest in implementing the cross-organization PHRs that HIEs can provide, the report says.

The report was developed by Venesco, a Virginia-based ONC contractor. Venesco facilitated and supported the HIEs and PHRs community of practice (CoP), and worked closely with its members in its creation. The PHR CoP was established in March 2015 by ONC as part of government’s investment in the promotion of consumer engagement in healthcare. The CoP included 13 HIE member organizations from around the nation who have established HIE-sponsored PHRs or are in the process of doing so, and were interested in sharing best practices and lessons learned with each other and other HIEs.

According to the report, there is considerable literature concerning the impact of PHRs on improving the patient experience of healthcare, outcomes, and cost—including a 2014 national survey by the National Partnership for Women and Families that showed that the number of patients with online access to the information in their providers’ EHRs is now 50 percent, which is nearly double the rate in 2011. As such, there are clear advantages of the “one-stop shopping” approach that HIE-sponsored PHRs represent for patients, providers, payers, and other stakeholders, the report attests. Some of these advantages, as outlined by the CoP membership, include:

• Having an HIE base for the PHR provides greater interoperability, depth of information, and ability to integrate data sources, which in turn provides better service to the consumer and to other stakeholders.
•  Brings additional value to existing HIE users to keep them as customers and helps attract new organizations as HIE customers
•  Simplifies meaningful use compliance for the patient engagement measure (attractive to overburdened providers)
•  Current tethered systems (e.g., one healthcare organization) require the patient who is seen by multiple providers to deal with and manage multiple PHRs, in contrast with the centralized and comprehensive patient record provided by the HIE.

What’s more, there were a number of questions that arose during CoP discussions concerning the value proposition and sustainability, including whether HIEs should charge providers and/or patients for PHR services. It was agreed that an important PHR value proposition for HIEs is that it adds value to HIE member participation so helps retain existing subscription customers and attracts new customers. For this reason, the prevailing pattern appears to be that there is usually no charge unless specialized functionality is requested by specific providers, the report concluded.  

Other major issues and barriers which must also be considered, according to the report, are: in-person authentication (online self-authentication process could be developed as an alternative); workflow issues, such as when is the best time to offer a patient portal to a patient or consumer; privacy and security; technical issues; and integration of patient-generated health data.