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Creation and Curation of FHIR Profiles - process and governance

Publication date: Dec 14, 2017

FHIR needs profiling. During the recent FHIR DevDays in Amsterdam I held a talk covering the best practices around the process of creating a profile, as well as the process of the curation of profiles created by others.

Creation and Curation

The focus wasn't on the technical process of creating profiles (using tools like Forge), but on the governance of the creation process. How does one ensure that the created artefact (a profile in this case) has a sufficiently high maturity for it to be used in production? How does one ensure participation and input from all stakeholder groups ?

Creation and Curation of FHIR Profiles - process and governance (Rene Spronk)

To skip directly to the summary of the best practices around the Creation of artefacts (covered below in a separate section), go to 07:03 in the video. To skip directly to the summary of the best practices around the Curation of artefacts (also covered below in a separate section), go to 22:05 in the video.

Creation of FHIR Profiles

When looking at the process of creating new FHIR profiles one can look at the process of the creation of FHIR artefacts in general. HL7 itself has quite an elaborate process for the creation of production-ready (normative) artefacts. In general, FHIR distinguishes 3 phases in the lifecycle of an artefact: draft, active and retired. Multiple 'Maturity Levels' have been introduced, with a set of well-defined criteria as to when a new maturity level has been reached. Other projects use different maturity models. Quite a few use some form of test event to drive the maturity of the artefacts forward, through hackathons or sprints.

Some FHIR projects focus on the 'draft' stage of the artefact, to ensure that the underlying requirements have been well described. care should be taken not to develop a profile which (partially) already exists.

Best Practices - Creation of FHIR profiles
In general, the best practices around the creation of profiles can be summized as follows:
  • Process
    • Create a maturity model - QA criteria, test events, input from specific stakeholder groups
    • Use test events to advance the maturity level - Sprints, connectathons, etc.
    • Use a 24/7 issue tracker - Resolve issues as they arise, short cycles
    • Occasionally Freeze a coherent set of artifacts - Versioning, formal approval process
  • Governance
    • Monitor/adjust process - Ensure proper representation of all stakeholder groups

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Curation of FHIR Profiles

When one doesn't define ones own profiles, but one has a responsability to curate the profiles as created by others, the situation looks a bit different. In general (see image below) Organisation1 usies its own process to define an artefact, and at some point in time sends the arefact to Organisation2 for approval/wider use. Organisation2 will have to determine at what maturity level it's going to accept the proposed artefact, given that e.g. there may be issues around the scope or the overall quality of the proposed material.

In order to ensure participation by representatives of Organisation1 in the curation process one could make it mandatory for those that propose a profile for curation also commit themselves to participate in the curation process. If one proposes a profile for curation, one will have to accept that the scope of the profile may change (mostly: the scope will be widened), so the resulting profile (as accepted by Organisation2) may have to be profiled by Organsisation2 for it to be useful in its own (more narrow) context.

Best Practices - Curation of FHIR profiles
In general, the best practices around the curation of profiles can be summarized as follows:
  • Ensure participation of those proposing acceptance of an artifact (“third-party”) in the curation process itself (both governance TAG_BODY actual curation)
  • Decide: co-development (get involved early), or curate ‘final version’ created by third-party
  • Curated/accepted artifact may differ from the one used by third-party - third-party to use constrained version of accepted artifact

Most large projects (be they coordinated by a vendor-consortium, an HL7 affiliate or a national health IT organisation) will end up having to deal with a mixture of curation and creation.


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Ringholm bv is a group of European experts in the field of messaging standards and systems integration in healthcare IT. We provide the industry's most advanced training courses and consulting on healthcare information exchange standards.
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