Patient summary sharing on a national scale


Sharing information about the medical background and history of a patient by a healthcare professional within a country or region


For the exchange of medical information about a patient, a Patient Summary provides the participants in a healthcare pathway with the 38 basic medical background information. In collaborative healthcare, in the transfer of a patient to another hospital, and in a multidisciplinary board review, the Patient Summary functions as the standardised information set of medical information. The structuring of basic information such as current medication, allergies, advance directives, diagnoses and therapies allows the different healthcare information systems to absorb the information from any other healthcare information system. The treatment of patients without proper medical background information is hazardous and should be avoided. This Use Case proposes a way towards solving this problem. 

Patient Summary

The growing number of chronic healthcare conditions, together with a more multidisciplinary approach to chronic disease management, have increased the need for the exchange of medical information between healthcare organisations and individuals. Since this involves the exchange of information between different healthcare information systems, a standardised patient summary containing the basic medical background information of the patient, in a uniform and structured manner, is seen as an important step towards healthcare integration.

Several countries in Europe are working towards a national set of structured and standardised data, to be used as starting point for a national Patient Summary.

There are challenges, though. The selection of data elements, the level of granularity, the terminologies and coding system, and the formatting of the message or document, depends on national principles and requirements, on legislation, architecture vision and on choices made in the past. It requires a lot of effort, and a lot of consensus, to get a broadly accepted (and implemented) Patient Summary. Everyone sees the advantages, but the devil is (as usual) in the details.

In a number of countries, initiatives have been taken towards the definition of a national dataset for the exchange of health information. Typically, they start with the core pieces of medical information that are relevant to all healthcare professionals.

The exact content and format of the different national Patient Summaries will be interesting study material for (later) comparison and harmonisation. Although there are existing templates for the composition of a Patient Summary, such as CCD (Continuity of Care Documents), XDS-MS (also called IHE Medical Summary) and others, in practice these are often used as starting points only. This may also have to do with the fact that some of these “templates” were written from a national rather than an international point of view. Also, the amount of detail, data elements specific for a country, et cetera, will also lead to different specifications; a Patient Summary is the result of negotiations between different stakeholders. This comparison is outside of scope for the Antilope project, but this Use Case could be used as a reference for any such initiatives.

Here is a short overview of the current initiatives of the different national initiatives towards defining a standardised Patient Summary:

In the Netherlands, all academic hospitals, together with Nictiz, are 39 currently working towards the definition and implementation of such a national Patient Summary, the “Registratie aan de Bron” (“Registration at the Source”). They are defined as the basic set of information that is going to be used in the transfer of a patient (currently, the scope is hospital to hospital). The information is defined in the CDA document format, and uses elements of CCD, LOINC, SNOMED-CT and other international and national standards, besides some proprietary elements.

Patient Summary
Other information (referral note, specialism-related information, diagnostic studies, diagnostic study reports, etc.)
Physician in a healthcare organisation A
Physician in a healthcare organisation A
Functional process flow: 
  1. The patient consults a health professional in a hospital
  2. The HCP decides that the patient needs to receive surgical intervention in another healthcare organisation (healthcare organisation B)
  3. The patient gives consent to the HCP for the sharing of the medical information with a HCP or specialism (role) in healthcare organisation B
  4. The HCP refers the patient to a HCP in healthcare organisation B
  5. An appointment is made in healthcare organisation B, and the patient consults the HCP there
  6. The health professional retrieves the Patient Summary and uses it for the consultation. In the following two Realisation Scenarios, different methods are described, which can be briefly described as “push” and “pull”. These are actually simplified depictions of the actual workflow and technology involved in the exchange, but they illustrate the fact that the same Use Case can be realised in different ways