The mystery of medical records

Both patients and members of the healthcare industry agree that cross-enterprise patient records (eEPAs) must form the backbone of any eHealth system. However, uncertainty often sets in with the realization that there are different kinds of electronic patient records, and what each one’s advantages and disadvantages are.

Collaborative patient care involving different healthcare facilities, not to mention the provisions of the eHealth Act, require electronic sharing of patient data and documents between the various healthcare service providers. Therefore, electronic patient records and their deployment in cross-enterprise patient care play a very important role. Several different approaches to cross-enterprise EPAs have been adopted in Germany:

eEPA: The cross-enterprise electronic patient record (eEPA) is a physician-guided electronic patient record shared by different healthcare providers. The eEPA is intended to gather all the documents required for collaborative patient care from the individual healthcare facilities’ primary systems, provided the patient consents to it.

EFA: Like the eEPA, the electronic case record (EFA) is a physician-guided cross-enterprise patient record, but it concerns one specific medical case or a specific diagnosis. The goal of the EFA is case-based coordination of care for patients being treated jointly in multiple facilities. As with the eEPA, the data and documents in the EFA are collected from EPAs in the individual facilities jointly involved in treatment, after the patient has consented. Unlike the eEPA, however, the EFA is closed as soon as the patient’s case is completed.

PEPA: The personal cross-enterprise health and patient record (PEPA) is the first system that actively involves patients/citizens and makes them the focal point in healthcare. The PEPA approach combines the principles of the eEPA with those of the electronic health record (EGA). In an EGA, patients typically upload medical information themselves, for example via a patient portal, and manage it there. The PEPA thus enables patients to access their data, add documents themselves, and actively control those documents and who is allowed to access them.

The choice of a system ultimately depends on individual requirements. The differences between the approaches can be seen in the following features.

 

Data sovereignty
The eEPA and EFA are physician-guided records, i.e. the treating physicians decide which information goes into the record. In a PEPA, patients have sovereignty over their data and decide what will be stored in their record and who can access it, but also what will be deleted or blocked. However, appropriate proxy functionality or a delegation plan must be available for patients who are unable or unwilling to manage their medical information themselves.

Record lifecycle
While an EFA is created for a specific case and is closed afterward, both eEPAs and PEPAs are cross-case systems. They are also referred to as lifetime or longitudinal records.

Patient access
Neither the eEPA nor the EFA was initially designed to allow patient access. In the PEPA approach, the patient portal is the central element. Patients have access to medical data and information.

Physician access
In the EFA system, exchanged information is displayed to physicians in their primary systems. The eEPA provides the professionals with either an integrated display function or access via a portal, as does the PEPA. Access from the physicians’ primary systems can be implemented appropriately to create more user-friendly portals.

Patient consent
Patients give the relevant facilities their consent for information to be shared with the eEPA and for its use. Access control for co-treating physicians is automated on the basis of predefined roles and rules in the treatment context. With the EFA, all of the physicians and facilities involved in treatment have access to the case record once the patient consents. In a PEPA, consent and access rights are issued via the patient portal, where the patient can also control which physicians at which facilities will be allowed to see which documents.

Source of medical documentation
In the eEPA, EFA, and PEPA models, documents are supplied by the linked primary systems. With an eEPA, documents can also be delivered via the professional portal. In PEPAs, patients can upload additional discharge letters and reports to the record via the patient portal. The portal can also be used to collect patients’ reports on their current health status in the form of questionnaires or diaries (“patient-reported outcomes”), and can even incorporate data from lifestyle apps.

Discussion

Each of the models described here is intended to improve data exchange across systems, and thus improve collaborative patient care. In the PEPA model, patients can be actively involved in the management of their health information. However, this requires appropriate structures for patient questions and support. The technical foundation for these records systems should be an international interoperability standard, most likely IHE, so as to ensure interoperability in the integration of primary systems and between various records systems. However, the national eHealth strategy still lacks some features that would help to develop this market effectively. The strategy should establish the legal framework, which includes specific regulations for patient rights and data protection as well as financing and interoperability, as has already been done in other countries.