The conference opened with the vision of the global eHealth ecosystem where eStandards nurture large-scale eHealth deployments with co-creation in interoperability, trusted dialogs on costs, plans, and expectations and strengthen Europe´s voice and impact with digital assets that fuel creativity, entrepreneurship, and innovation so that people (digital natives and immigrants) enjoy timely safe and informed health no matter where they are.
Robert Stegwee, chair CEN/TC251 (Health Informatics) presented the case for formal standardization (link) with the four perspectives of the health system seeking to balance costs and responsibilities, the workforce struggling to cope with the digital, the digital health market seeking new opportunities in a data-driven world, and the consumers having difficulty navigating the health system. These perspectives realign interests of stakeholders looking at the value, cost, and direction of standardization in new light. They highlighting the value of supporting the full cycle of standards with standard sets and tools that allow to connect standards development with testing, deployment, use, and maintenance, making them “live”.
Marco Eichelberg (OFFIS) presented the draft eStandards roadmap that includes eleven recommendations and alternative options for proceeding with collaborative standards development. The audience was asked to comment and vote on the draft recommendations, with a rating from 1 (strong disagreement) to 5 (strong agreement). The emerging areas for recommendations are as follows:
These draft recommendations will be further refined and updated with the detailed input provided by the engaged workshop participants and the eStandards community. Furthermore, recommendations towards a establishing an eStandards repository and addressing issues related to cloud services need to be further explored.
Marco also outlined the strategic options in addressing the co-existence of competing or overlapping standards or specifications, namely: (a) allow full blown competition between Standard Developing Organizations (SDOs), leaving it to the eHealth Market and individual decision makers to choose the realization scenario that fits best for them; (b) Employ the envisioned European SDO Platform to achieve coopetition among SDOs in creating fit-for-purpose realization scenarios for Europe; (c) Delegate to a European eHealth Competence Centre to achieve harmonization of standards across Europe.
Marco highlighted that SDOs are rooted in, depend upon, and service a broad community of stakeholders that develop and deploy eHealth solutions and services. In the deployment phase, a realization scenario will be selected or developed that specifies the set of standards to be implemented. To be effective, realization scenarios need to have a conformance testing and attestation process connected to it, so that: (a) Implementers are brought together and learn from each other; (b) Standards developers are confronted with standards use in practice; (c) Attestations can be easily referenced in procurement documents; (c) The standards development life cycle actually comes alive across SDOs. Through active engagement and collaboration SDOs can together assume the responsibility to monitor the development and maturing of realisation scenarios in real life projects.
In support of the standards development life-cycle, Marco stressed that tools and data need to be shared across SDOs. Moreover, when standards sets and tooling provide software components for interoperability, an open source licensing model is recommended. What gets increasingly important, however, is monitoring of and feedback from the user community on the usage of standards sets in terms of implementation and adoption and that is a functionality that can be incorporated in the tooling. In the end monitoring of standards sets is part of the lifecycle and is needed to ensure quality and maturity of the standards.
Marco moved on to stress the “global vision/local insight” continuum with the ultimate focus being on local deployment where maturing of realization happens by engaging the community. A European SDO Platform can coordinate such activity through national mirror organization that localize the realization scenarios making local deployment easy and cost-effective, but stakeholders need to invest in global participation in SDO activities, furthering European interests at a global level.
After the coffee break, Marco presented the lessons learned from 19 case studies on the coexistence of standards. He shared that in „real-world“ eHealth deployment projects, there was little concurrent use of competing/overlapping standards other than terminology mapping such as International Classification for Primary Care (ICPC) and ICD-10 (DK), ICD-10 and SNOMED-CT (NL), National and regional EHR terminology (IT), ICD-10 Procedure Coding System (PCS) and SNOMED-CT procedures (ES). Marco concluded that there is “no magic bullet” to address coexistence of overlapping/competing standards: there are three fundamental approaches: gateways, model driven and semantic mediation, but terminology mapping (and security) remain “hard” problems. The good news is that there is lots of experience and tools available to learn from!
Karima Bourquard (IHE Europe) presented the use case repository developed by IHE-Europe as part of the effort to elaborate the refined European eHealth Interoperability Framework and define new use cases and realization scenarios. The use case registry is available at https://usecase-repository.ihe-europe.net. The voluntary eHealth Network of government officials in Member States established under article 14 of the European Directive on patients´ right to cross-border care, in its November meeting adopted the ReEIF, which forms the backbone of the eStandards Roadmap.
Next, Catherine Chronaki and Morten Bruun-Rasmussen chaired the healthcare executive panel, comprising three hospital CIOs, a clinician and the representative of the Croatian health insurance fund. The panelists introduced themselves and answered two questions:
Lively discussion followed.
Prof. Björn Bergh, CIO/CTO, University Hospital Heidelberg, User Chair of IHE Germany indicated that he would like to see “accelerated adoption of IHE profiles in the products of the vendors in Germany. Currently, implementation of IHE profiles takes one year on the average.” He also expressed the impression that we focus too much on semantics where for him as an MD a free text letter is sufficient. Asked whether a different “language” is needed for (standards) development that is understood both to clinicians and engineering Prof Bergh notes: “Rolling out a shared care record does not mean that clinicians have to understand standards like XDS. We only talk to clinicians about what kind of documents they need in the shared care record; the answer is usually: “we want everything in there, every single report”. My impression is that clinicians really want a shared record, they are not against it, the problem is rather that you need to change processes in the hospital, which is always hard.“
As for immediate priorities, Prof Bergh, observes that “In the Shared Care Record (IHE XDS) interoperability is mostly on a syntactical level. Interoperability on a semantic level such as value sets were not a priority for a long time in Germany, but getting more important now. The priorities are to address Semantic issues (terminology) within one affinity domain, while focusing on deployment and evaluation of cross-community profiles for cross-regional communication.”
Prof. Dipak Kalra, President EuroRec Institute, Belgium, recalled his 12 year experience as a general practitioner in London. He noted that “Clinicians want connectivity. They need this to support shared care (especially to deal with rising co-morbidity), for patient safety (e.g. needing a complete view of medications, allergies). Sharing information must include the patient and their family. Clinicians want “smart” solutions, giving them overviews and trends, risk stratification, decision support for prescribing and referral, care pathway and workflow support (and not form filling).” Prof. Kalra went on to recognize significant gaps in (a) semantic standards (clinical models and term lists); (b) guidelines and decision support rules that can be executed on different systems; (c) quality metrics that truly reflect outcomes oriented care; (d) access policies that scale across care settings and borders; and (e) connectivity with Personal health records.
On the topic of communication with physicians, Prof. Kalra said: “Our concern is that once we voice a new idea, you technicians disappear in a “technical ether” and never come back. You need to actually keep communicating with clinicians: have you gotten the needs right; does the implementation fulfil the users´ needs. We need both a bottom-up approach based on successfully implemented interoperable use cases, and a top- down approach starting on the political level. Procurers need to understand the value of standards; otherwise this is a missed opportunity.”
Domingos Silva Pereira, CIO, Centro Hospitalar Vila Nova de Gaia/Espenho, Portugal, presented the needs of his hospital, highlighting the struggle with multiple HL7 engines supported for different products. He notes “…many problems in our hospitals that we need to solve locally. The move to the use of IHE profiles has been understood as a necessity for 10 years, but still has not happened... So things will have to happen on local/national level first to close the gap to international standardization.”
Vanja Pajic, Project Manager at the Croatian Health Insurance Fund, presented the situation in Croatia noting that it has a very flexible healthcare system that can implement new standards relatively quickly. In offering pan-European services key obstacles are lack of standardized national clinical terminologies, pathways and procedures (work on implementing EU recognized standards); rising cost of healthcare provision (thus priority on eHealth). On the topic of a different language to communicate with clinicians, Vanja Pajic agrees that the technical perspective dominates the discussion: “Once you get systems to interoperate, you get to the next challenge: how to make the systems interact with non-technical people. One thing we noticed in JAseHN is that systems get technically more interoperable, but then there are other layers of interoperability that are lacking: organizational (health IT policy) and legal/regulatory. This also needs to be addressed.”
Bernd Behrend, Vice-Chair KH-IT, German hospital CIO association raised the issue that in Germany as in many places around the world the outpatient sector uses different standards than the hospital sector for the same use cases. According to Bernd Behrend, the priority areas for information sharing within a single hospital are patient admission, ordering, results, patient identification, and universal viewer. Between hospitals the top use cases are patient identification and reporting. He identified the high cost of interfaces, the inability to transmit information between systems, difficulties in scaling (many devices to connect), gaps between catalogues, scheduling of appointments, as well as problems with identity management and access rights. Bernd Behrend stressed the importance of use cases “I am happy that you are thinking about common use cases, and not just technical issues. This is a good starting point for a good IT architecture. Also, learning from other projects is important.”
Pia Jespersen, Senior Advisor at the Danish eHealth Board (DeHB) indicated that the DeHB is the authority for issuing eHealth standards for the Danish health system. Pia observed that “standards development is too slow and SDOs need to speed up their processes, and become more agile.” Pia also noted the need for “controlled” localization: “We are actually going for international standards; we just need the minimal national localization/adaption that clarifies how an international standard can be used in our national healthcare system.” Pia added that “Member states should share localization work, because today we replicate much work in each country. Also use cases (and sharing thereof) are important.” In Denmark we are reluctant to identify mandatory standards, unless we sure sure that the relevant standards are mature and usable with some market uptake.”