Industry-led efforts beginning in 2006 have catalyzed a movement towards portability standards for payer-based PHRs. In 2006, America’s Health Insurance Plans (AHIP) and Blue Cross Blue Shield Association (BCBSA) announced their plan to conduct a pilot test that explores PHR portability between PHRs, and between PHRs and EHRs. The goal of the pilot was to develop standards that ensure patients can move their payer-based PHRs from one plan to another as their health coverage changes. This pilot demonstrated the ability to move and transfer the data from the PHR only. When the data was transported to another health plan’s PHR, the format, display, navigation, and functionality were unique to the receiving health plan’s PHR.
AHIP, BCBSA, and HL7 announced plans to collaborate on data portability standards for PHRs in December 2007, when the three organizations signed a Memorandum of Understanding. AHIP and BCBSA developed an implementation guide with standards and other information that will foster PHR portability standards. AHIP and BCBSA have entrusted HL7 and Accredited Standards Committee X12 with further development and technical maintenance of the portability standards. The X12 plan-to-plan transfer portability standard is currently being balloted by HL7 as part of the PHR-S functional model.
The X12 standard is used to ‘communicate individual patient information requests and patient information (either solicited or unsolicited) between separate health care entities in a variety of settings to be consistent with confidentiality and use requirements.’ In this definition, patient information is defined as demographic, clinical, and other supporting data.
Cross-Enterprise Document for Sharing (IHE-XDS) Integration Profile
Integrating the Healthcare Enterprise (IHE), an initiative designed to improve electronic health care information sharing, has done a great deal of work related to portability.  Namely, IHE’s standards-based specifications address the movement of the content within PHRs. According to Charles Parisot, Manager of Standards and Testing for GE Healthcare, and co-chair of the IHE IT Infrastructure Planning Committee, the movement of information is handled by the Cross-Enterprise Document for Sharing (IHE-XDS) Integration Profile. The XDS also provides the functionality to extract and move information between systems, and to share that information in a certain domain, which could be managed by a PHR, a RHIO, or a PHR hosted in a hospital. This is consistent with the HITSP Interoperability Specification IS 03 which also relies on XDS for PHR interchange of CCDs with EHRs, Plans and Pharmacies.
For example, suppose a patient were to visit a hospital/provider. The hospital/provider would produce several documents that summarize the health encounter. Through XDS, the patient would then be able to access information that the hospital/provider published. The hospital/provider would also be able to publish the information to the patient’s PHR or through the Regional Health Information Organization (RHIO). Then, the patient can search for these documents and bring them into his/her own PHR. Thus, the XDS enables the patient to retrieve information, gather it, and bring it into their own PHR.
Cross-Enterprise Document Reliable Transfer (IHE-XDM)
IHE also created the Cross-Enterprise Document Reliable Transfer, IHE-XDM, a standards-based specification which provides cross-enterprise document interchange using a common file and directory structure over standard media devices. This specification is highly relevant to PHRs because it permits patients and/or providers to use physical media to carry sets of medical records. Specifically, the IHE-XDM provides the interchange to transfer documents and metadata over memory devices (e.g., CD-R and USB) and email using ZIP attachments. The specification promotes interoperability between EHRs and PHRs, enabling the exchange of documents between patients and providers, or between providers. According to Charles Parisot, Manager for Standards and Testing for GE Healthcare, and co-chair of the IHE IT Infrastructure Planning Committee, the real value of XDM is that it can work in conjunction with XDS.
HITSP approved the use of XDM to extract part or all of the content source or aggregate information from a PHR, and move it to another doctor or provider location. XDM defines an interoperable media organization and file system that enables a person to carry documents from the PHR to another place that will be able to open the media, and navigate the media through various registration entries. The media may contain one or many documents of interest, and serves as a transportable mini registry and document repository.
Charles Parisot described the process of moving information from one doctor/ provider location to another. The patient can input documents (previously received as input from a variety of locations) from his/her PHR into a piece of media, as well as extract his/her current view as a CCD document, and copy this document to the media. Then, the patient is able to carry the media with them. If they chose to open a new PHR somewhere else, the patient will be to load the input documents, and reconstruct the PHR with the same content as on the other server.
Cross-Enterprise Document Reliable Interchange (IHE-XDR) Integration Profile
The IHE Cross-Enterprise Document Reliable Interchange (XDR) Integration Profile is a standards-based specification that was also published by IHE. The IHE-XDR enables the exchange of patient-related medical documents between ‘health care entities’ (e.g., private physicians, clinics, in-patient facilities, etc) using a point-to-point network.
In contrast to the XDM, where the person carrying the media does the sharing of information and has the ability to give specific access to a party, the XDR is useful in situations where a patient wants to share information with a single designated entity. The XDR is point-to-point in the sense that when one or more documents in a source system need to be shared with the target system, the patient can use the XDR to push documents into the target system. The patient can choose to not publish specific pieces of information to the target system as well (such as medication information).
One of the benefits of the IHE-XDR Integrastion Profile is that it enables document sharing in the absence of a document sharing infrastructure such as the IHE-XDS Integration Profile. A second benefit of the IHE-XDR is that it enables document sharing between one or more health care entities via a point-to-point interchange. The IHE-XDR is an important standard for PHRs because it enables interoperability between PHRs, EHRs and other health IT systems.
The PDF/H (PDF Healthcare) was co-developed by Adobe Systems and Intel, and also has support from a number of medical societies. PDF-H is a secure data exchange container or ‘safe-deposit box’ for data inclusive to a PHR. The PDF-H contains for personal health information in the form of digital images and data (e.g., X-Rays, CT-Scans, MRIs, and Sonograms, lab data, ECD, EEG, etc). The PDF-H will work in conjunction with the CCD or CCR format to make data portable across and between different types of systems. The PDF technology has several benefits. First, the PDF is platform and system-neutral. Second, it enables various types of data to be stored regarding of source or destination. Third, information stored in a PDF can be easily selected and quickly printed. Finally, the technology enables bi-directional information exchange.
In 2007, AIIM – the Enterprise Content Management Association (ECM) and ASTM International developed a working group charged with developing best practices for the PDF/H that ‘facilitate the capture, exchange, preservation and protection of health care information.’ The PDF/H effort represents an effort by industry leaders to promote the adoption of PHRs and ensure that medical information is portable. The PDF-H standard has been submitted for ISO approval.