Integration of the Personally Controlled Electronic Medical Record into a Regional and Data Exchange: A National Demonstration

We present the approach taken in a Massachusetts-based national demonstration project to integrate the IndivoHealth (formerly known as ping¹) personally controlled health record (PCHR) with the MA-SHARE² network, the statewide inter-organizational data exchange. We describe how we have created a patient-controlled gateway to the network, and how PCHRs have become a first class data source in the network.

Background

The PCHR is a digital collection of a patient’s medical history, integrated across sites of care and over time. Their successful adoption and diffusion is a national priority that requires seamless integration with emerging regional and national data health exchange architectures. We describe how we have solved two challenges: 1) how a patient is granted access to institutional data; and 2) how an authorized health care provider or administrator locates a PCHR.

Methods and Results

The PCHR

IndivoHealth is a suite of architectures, standards, and technologies providing patients strict control over their individually encrypted record. That record is built on a flexible XML data model and is accessible over the web. IndivoHealth emphasizes patient control, security, portability, and ubiquitous access. An important feature of IndivoHealth is its subscription framework that allows for the deployment of institution-specific agents that periodically update the IndivoHealth record with new electronic data from the provider institution.

The regional data exchange

MA-SHARE, a program of the Massachusetts Health Data Consortium, has developed a community wide master patient index called the Record Locator Service² (RLS). The RLS enables patient look-up within a diverse and distributed array of institutional information systems. This work is funded in part by an HHS contract to develop prototypes for a Nationwide Health Information Network (NHIN) architecture, and the regional models are being tested for national scaling by data exchange with two other regions – Indianapolis, IN and Mendocino, CA.

Challenge 1

To regionally network the PCHR we developed a new class of subscription agents. Typical agents had been for individual institutional systems. The new class, regional subscription agents, subscribes to the regional information network. Here, a patient authorizes a network agent to locate all new documents using the patient index identified by the RLS and add them to IndivoHealth. Thus a patient has, at a single point of entry, a multi-institutional subscription to his or her own medical data.

Challenge 2

To enable a PCHR to be located by health care professionals, we adapt the PCHR system to interoperate with the RLS. Data are exchanged through a pre-established, secure protocol. IndivoHealth’s role is reversed to acting as a network data provider. IndivoHealth registers the patient’s PCHR with the RLS so that other institutions can locate it. To participate in regional data exchange, patients need to accept a shift in the granularity of authorization. Typically, patient authorization to allow others to access their IndivoHealth record is handled at the level of the individual provider. However, since actors in MA-SHARE are institutions and not individuals the patient needs to authorize at either the network or institutional level. This may require the patient to balance strict control with wider access.

Conclusion

The IndivoHealth PCHR is both the patient gateway into the MA-SHARE regional data exchange network and a source of data within that network. The technologies necessary to implement the architecture have been developed and all the software code is open source.

Figure.

The PCHR as a patient gateway and data source for providers in a regional data exchange. Arrows indicate the direction of data flow.