Vision for a federated digital Health eco-system in Australia

Sep 24, 2018

A reader asked me to describe what I think a federated system for digital health in Australia would look like. So here’s a vision for the system, from 3 different perspectives: services, governance, and user experience.

Services

I imagine a federated set of systems – that is, an eco-system of services run by multiple organizations that have common governance, policy and interoperability standards

The system is composed from a number of services:

|Directory service|A directory of services from the list below. There is a master service that lists the supported identity and consent services, and is the root a set of other directories services that list all participants in the eco-system |Identity service|Runs anopenId connectservice that returns a token containing an openId JWT with anIHI or an HPI-I(or other identifiers).myGovand PRODA and/or their logical successors are 2 such services, and other approved ones could be provided by other organizations if they meet the requirements |Consent Service|Stores a consumer’s agreements with regard to how information flows around the system (see further discussion below) |Record Locator Service|If the consumer agrees, stores a list of clinical services that have records about the consumer |Clinical Service|Provides direct access to a patient’s health record, as provided by a healthcare service provider ( provides direct healthcare services for the consumer as a patient e.g. a GP / hospital). Serves at least theFHIR Argonaut (AU)interface (clinical summary and clinical documents) but may provide additional services (see below). Clinical services use one of the supported identity services (see above) to identify the user, and may also share information with other users if the consumer consents (see consent service) |Clinical Repository Service|A repository that provides strorage/aggregation/re-publishing services for clinical records. These may be domain focused (medication reconciliation/management, or hosting shared care plans), or emergency medicine focused (national store of meds/allergens), or patient focused (patient selected store of all clinical & diagnostic records). One of these services would be the existingMyHR |Decision Support Service|Providescds-hooks servicesto any of the clinical software. Candidate uses: checking MBS/PBS utilisation, suggesting clinical guidelines, or possible patient support services. These national services can be consumed by  any clinical system

End user software – consumer or provider focused – leverages these services to connect the user to the national system.

There’s a series of underlying services that all these user focused services take advantage of:

  • Healthcare identifiers Service
  • National Clinical Terminology Service
  • Secure messaging delivery  service / eco-system
  • Subscription notification service (allows consumers/providers to be notified when particular events happen)
  • Conformance testing services - tests other components of the system for compliance

(Some of these services already exist, but may need updates to scope, supporting legislation, and technical interfaces).

Governance

Governance of the system is the proper responsibility of the Australian Digital Health Agency, which works with government and the many other interested parties to provide for safe, reliable and secure running of the eco-system.

Governance would include:

  • Management of technical specifications and standards including their republication and evolution.
  •  Regular evaluation to drive updates to existing services, introduction of new services, and decommissioning of no longer required services.
  •  Management of information models and associated terminology bindings and underpinning coding systems.
  •  Alignment / harmonisation with jurisdictions and other Commonwealth agencies e.g. AIHW, CSIRO, Digital Health CRC.
  •  Processes to clarify clinical needs as input into technical standards and specifications (something similar to the UK’s PRSB).

One particular focus is security: setting minimum expectations for all connected systems, and providing rapid response – up to and including disconnecting / unregistering systems when problems are discovered.

Technical standards should be  published and governed through the national digital health standards authority (we desperately need one). Policy needs a mix of legislation, regulation, and operational policy.

Finally, the governance process should be backed by a conformance testing process that ensures compliance with the published policy and technical standards, and delivers safety and reliability.  Note that experience shows this is a particularly difficult thing to get right.

Experience : Clinical

A healthcare provider’s experience starts with their regular system; this is connected to the national system, and knows the user and patient(s) identities. Provided that a consumer has consented (see below), they can quickly see where a patient has received care, and view or import records from them. In addition, they can see a patient’s care plans, propose changes to them, and join discussion about them. They can also send messages to particular institutions, or other providers.

The clinician’s software also connects to the national decision support service; through this, the clinician is automatically notified if there are known medication interactions when they are ordering medications, or if there are recent diagnostic tests when ordering diagnostic tests. Specialty colleges can scan for particular clinical conditions, and recommend treatment guidelines or encourage recruitment into clinical trials when appropriate.

Experience : Patient

Consumers connect to the system through a national portal (web site), or one of a number of apps (including the base health frameworks for the mobile phones). From there, they can manage their consents, find their service providers, connect to the health information, and use services provided by either their health care providers, or the repositories or national decision support services.

A consumer is able to control access at a very fine grained level, in advance of any information sharing that happens. A consumer’s consent choices might look something like:

  • [√] Share my records between organisations that provide care for me
  • [  ] Share my records with [choose organisation]
  • [√] Only share my records if I set up the connection
  • [  ] Register all my care providers in [choose record location service]
  • [√] Keep a copy of my health records in [choose repository]
  • [  ] My care plan is found [choose care plan repository]
  • [√] My advance care directive is [choose repository+document]
  • [  ] Approve all/de-identified research use check with me when research use is requested

Consumer Apps navigate through the system starting from the central directory service, and can query the clinical services to find out what additional services they offer.

Experience: Data Analytics / Research

Researchers can connect their own data gathering applications to the framework, and gather data form particular patients or providers based on their consent. Consent may be automatically granted in advance, or by specific request (with notifications). Researchers can also request participants fill out questionnaires, or request for them to consider becoming part of clinical trials. Researchers can also publish their conclusions and outcomes directly to the patients that helped them by sharing data or more.

Conclusion

So where does this leave us? This is one vision for what we could have. Most of my readers here on this blog will realise that there’s plenty of discussion to have about this. And plenty of necessary standards, policy and infrastructure needed to begin to fill this out. And we’d have to figure out a course from where we are towards a vision like this (and reality is far different to imagination, of course). But hopefully this will inspire people to think about this and come up with their own visions for what we can have.

p.s. Thanks to Reuben Daniels for input to this post.