Prof Sylvia Thun – Trillium II Ambassador

Sylvia Thun is Director for eHealth and Interoperability at the Berlin Institute of Health (BIH) and Professor for Information and Communications Technology in Healthcare at Niederrhein University of Applied Sciences. She is both a physician and a qualified engineer with particular expertise in national and international IT standards in the health sector.

You only have to talk to her for a few seconds to become aware of the passion with which she cares about standardising health care information to improve cross-border health service delivery. She has been involved with EU projects working in this area from the beginning, with epSOS ten years ago; needless to say, she is hugely supportive of the HL7 FHIR IPS so delighted to become one of our ambassadors.

In her current role she has played a key part in securing recent German agreement to adopt SNOMED CT, which she hopes will now encourage those other countries that are unsure whether to make the leap to join as well.

She has been involved with encouraging the Kassenärztliche Bundesvereinigung[1] (KBV), the German National Association of Statutory Health Insurance Physicians who represent doctors & physiotherapists at the Federal level, to buy in to the IPS. She is also a leading light in the Medizininformatikinitiative[2], helping to ensure that every doctor, patient and researcher has access to the information they require in the future.

A harder nut to crack though was the largest vendor of primary care systems in Germany who wanted to stick with their own proprietary standards. Patient diplomacy, and the opportunity to expand into Switzerland and Austria if they adopted the IPS and other standards, wore them down though. An equal challenge were the four principal vendors of secondary care systems who also wanted to keep their own proprietary standards. However the umbrella organisation,  the BVITG[3] saw the logic and was instrumental in persuading all vendors to comply – indeed at present all the 34 university hospitals in the country are engaged in a €150m contract to standardise their health information systems on HL7 FHIR.

She is of course also engaged in international persuasion efforts, notably on EUCANCan, which is project developing a  federated network of aligned and interoperable infrastructures for the homogeneous analysis, management and sharing of genomic oncology data for personalized medicine in the EU and Canada. She also works with the standard terms of the European Directorate for the Quality of Medicines[4] (EDQM) in the IDMP project[5].

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[1] https://www.kbv.de/html/

[2] https://www.medizininformatik-initiative.de/de/ueber-die-inititative/vision

[3] https://www.bvitg.de/

[4] https://www.edqm.eu/

[5] https://www.ema.europa.eu/en/human-regulatory/overview/data-medicines-iso-idmp-standards-overview

Dr Petra Wilson – Trillium II Ambassador

Petra has held several extremely senior important roles in the health community in Brussels over the past 20+ years. Currently among her portfolio of activities, she is the European representative of the Personal Connected Health Alliance (PCHA)[1] and about to join the Board of the European Association for the Study of Diabetes. Her PCHA involvement is particularly relevant to her Ambassador role as the Continua design guidelines are referenced by the ITO, WHO and the European Commission (EC) for mHealth use.

Another current role is having just won (again) an EC contract on cross border patient flows in the EU, which makes her particularly passionate about the benefits of enabling patients to be treated with good knowledge of their medical history irrespective of where they happen to be. Given her past history working in the diabetes community, she sees people suffering from the complications of diabetes (all Types) as especially benefiting from use of the IPS; another group would be those living with cancer and still able to travel, indeed anyone with an NCD. In fact, anyone with health risks who wants to travel will benefit greatly from the peace of mind that comes from knowing the patient summary can be understood by medical professionals wherever they are.

More generally she is excited about the use of the IPS for European Reference Networks (ERNs) which were established at the same time as the EU legislation that eventually led to the IPS. ERNs enable ad hoc sharing of sensitive personal information related to those suffering from rare diseases.

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[1] Previously known as Continua, now a subsidiary company of HIMSS.

Mike Short CBE FIET – Trillium II Ambassador

Introduction

Mike Short is Chief Scientific Adviser at the Department of International Trade. Previously he held many very senior roles in the telecommunications industry, latterly in Telefonica/O2, as well as playing the key role in the formation and development of GSM Association as the lead organisation driving the adoption of digital mobile communications standards globally.

What was your motivation to support Trillium II, including becoming our first Ambassador?

Mike sees the world of digital health and care as entering a period of very rapid change, offering huge patient benefits and helping to overcome real skills shortages. No longer is a digital health intervention appropriate just in one country, or even in one region, such as the EU; increasingly, successful digital health and care services are global. At the same time some individual organisations – even very large ones – may see short-term economic benefits in operating walled gardens, preventing service interoperability outside those walls. He therefore sees the role of Trillium II as a vital counterweight to this drive: by showing the way with a single worldwide standard summary health record with globally recognised HL7 FHIR standards, Trillium II can be a catalyst to promote interoperability and thus support better access to prevention, diagnostics and care records, in that global change he is seeing.

Where does Trillium II fit into this broader process?

Clearly the International Patient Summary is not sufficient to make that change happen on its own – once the concept is widely accepted though, it will provide the basis on which we can work out how best to share data, how to handle approvals, and how to make significant parts of more systems resilient and interoperable. Patient centred data access also needs to be in the mix.

Is there a special reason for promoting EU involvement in Trillium?

These systems need to work at scale to be cost effective. Mike also makes the point that the FDA in the USA is seen as working more closely with Digital businesses, as reflected, for example, in the fact that almost twice as many Health apps have FDA approval as Medical Devices than have CE certification in the EU (as Medical Devices under the MDD/MDR[1]).

This suggests the importance of promoting Trillium II to app developers and systems integrators is a way in which their apps will be usable in both the EU and the USA.

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[1] See https://apps.healthskouts.com/ as EUDAMED has yet to come into force.

IPS @ ICIMTH 2019

The International Patient Summary has a strong presence at the 17th International Conference on Informatics, Management and Technology in Healthcare in Athens, July 5-7.

Children’s Immunisation in Europe – a Vision of using the HL7 International Patient Summary to transform local Data into Child-specific Information and Population Health Knowledge

By Shalmali Deshpande (Imperial College), Catherine Chronaki (HL7 Foundation Europe), and Michael Rigby (Imperial College)

Citizens and Health Data – what about digital health literacy by all?

By Anne Moen (Institute for health and society, University of Oslo), Eva Turk (University of South east Norway, Catherine Chronaki (HL7 International Foundation)

IPS Governance Framework: Current practices in Specification Use and Updates

By Robert Stegwee (CEN TC/251), Hans Gille (CGI), Catherine Chronaki (HL7 International Foundation)

A Privacy Management Analysis (PMA) of Exchanging International Patient Summary

By Gokce B. Laleci Erturkmen (SRDC Software Research & Development and Consultancy Corp.), Ezelsu Simsek (SRDC Software Research & Development and Consultancy Corp.), Giorgio Cangioli (HL7 International Foundation), Catherine Chronaki (HL7 International Foundation)

The International Patient Summary as blogs

During the recent HIMSS & Health 2.0 European Conference in Helsinki, Finland (11-13th June 2019), Trillium II partners shared their views on the IPS with the conference participants through a series of blogs.

You can read them all here:

Patient Summaries in focus: How many times do I have to answer the same question?  By Robert Stegwee, CEN

Is anyone actually using IPS or is it “just” another hype? By Janne Rasmussen, MedCom

Can Patient Summaries drive the patient journey of tomorrow across borders? By Alexander Berler, Gnomon Informatics SA

IPS Global Community of Practice for Digital Health Innovation. By Catherine Chronaki, HL7 By

The International Patient Summary: a story of synergy and cooperation in Standardization. By Giorgio Cangioli, HL7

International Patient Summary: A new source of health information to make us safer? By Dipak Kalra, i~HD

Congratulations to the Prize winners!

Trillium II Prize Award Announcement

On June 13, 2019 at the HIMSS & Health 2.0 European Conference in Helsinki, the winners of the Trillium Prize competition for most innovative idea or use of the International Patient Summary (IPS) standard were announced. They were selected from an international and independent jury from a list of nine finalists from Europe, Canada and Latin America.

Two initiatives that reflect the transformative power of the IPS in health and care were selected, showing how standards can serve as infrastructure to innovation both incremental building on existing solutions and disruptively challenging the status quo:

  • Trifork (Denmark), which proposes to extend the nationally operational Danish Shared Medication Record service, funded by the Danish Health Data Authority to provide Danish citizens with their patient summary information when abroad.
  • CAPABLE (Norway), which aims to provide citizens a tool to empower citizens to active use of personal health information in the IPS to make healthy nutritional choices being mindful of food and medication combinations.

While Trifork is an infrastructure driven project to facilitate safe care, CAPABLE is very much an empowerment tool for the citizens to be in control of their health and wellness. What is common to both projects is the need for health data that are provided through stable, safe, and trusted interfaces. This is exactly what the HL7 FHIR IPS standard is about.

The Trillium II project launched in 2019 the Prize award competition to advance awareness and innovative use of the HL7 FHIR International Patient Summary (IPS) among health companies and organizations. IPS standards advance the vision of the patient summary as a window to a person’s health information and highlight the value of health data as social good and human right. Consistently adapted and tailored to specific use cases, IPS standards implemented in electronic clinical documents in the HL7 FHIR format or as collection of FHIR resources from a library of building blocks. Reusable building block for allergies, medication, problems and conditions, lab results, and images, care plans, etc. are rapidly emerging to advance health data quality, safety, and trust delivering interoperability anytime and anywhere. Implementations of the IPS building blocks are already advancing proof of concept implementations of the Electronic Health Record Exchange Format recommendation announced by the European Commission in February 2019.

The winners of the Trillium II Prize Competition realized early the importance of the IPS building blocks.IPS

In 2007, the Danish Health Data Authority set out to establish a nationwide Shared Medication Record, containing up-to-date information on every citizen in Denmark and shared across all local systems in the healthcare sector. Trifork was selected as vendor and has been part of building, tuning, expanding and driving the system since the beginning. Introducing IPS is a natural next step to the range of national services in the Danish healthcare infrastructure. Using existing well-established services such as the Shared Medication Record eases the transition for existing systems towards a national support for IPS in Denmark and makes it safer to cross borders for both Danes as well as international citizens and still being able to receive the correct medical care in case needed.

For more information on a Shared Medication Record IPS extension contact: jvi@trifork.com

CAPABLE, on the other hand, aims to empower citizens to active use of their health information and the University of Oslo, Akershus University Hospital and Norsk e-helse AS are part of the project. The vision for CAPABLE is to support every citizen who want to collect, curate and/or complement, and control personal health information. The content suggested in the IPS is an excellent starting point to include data like ePrescription, medication list and information leaflets, appointments and clinical summary, and special diet and nutritional requirements. This can drive innovation by allowing for and supporting citizens in efforts to collect, manage and safely keep clinical and personal health information, starting with a) better use of medication, b) understand the role of nutrition for health, especially related to medication, c) coordinate data from primary care, hospitals and other relevant sources. The “CAPABLE-tool” will be available to citizens, to be used as they like at all points of need.

Citizen can be the carrier of their health information using the “CAPABLE-tool” in all interactions with the health and care system; a visit to a specialty clinic, hospitalization in Norway, Scandinavia as well as abroad (cross-border), in consultation with GP or Primary care institutions (nursing home or a skilled care facility), or in private clinics. Making citizens as aware of the benefits in carefully selected health information in the IPS with the “CAPABLE-tool” comes with concrete opportunities and potential to improve digital health literacy, empower and engage people, and use their resources wisely to improve the quality of life and overall wellbeing. When fully deployed, we expect the “CAPABLE-tool” to impact health and care in multiple ways and by “let citizens help there is potential to create significant value for the citizen, the health system and society. For example, in Norway alone, lack of compliance in medication management is estimated to cause some 2000 premature deaths every year, and direct costs of 5 billion NOK per year. A recent cost-benefit analysis suggests that prevention and treatment of nutritional problems may contribute to 800 million NOK in reduced hospital costs, and additional reductions in primary care.

For more information on CAPABLE please contact: anne.moen@medisin.uio.no

 

The Trillium II Prize finalists and award ceremony

The Trillium II Prize

In the Trillium II project, we launched in 2019 a Prize award to promote the awareness and innovative use of the HL7 FHIR International Patient Summary (IPS) by health companies and organizations.

IPS standards advance the vision of the patient summary as a window to a person’s health information and highlight the value of health data as social good and human right, i.e. it makes key health information about me available anytime and anywhere.

The Finalists

CEN and HL7 has worked closely for 2 years to deliver pragmatic standards and implementation guides and The Trillium II project has supported this work strategically. So, the Prize was also our chance to see if this work has been successful in spreading the knowledge and guidance on IPS implementation. So, did it turn out to be just a hype and a dream? No, thankfully not!

After an internal eligibility review process, we had nine finalists who each in their own way has a strong and ambitious plan for how to innovatively use IPS.  They came from SMEs, Governments & public authorities, private companies and multi-national consortia and they represent Latin America, North American and Europe. This shows that IPS is truly global and end-users in all countries can benefit from it.

The Prize finalists have applied IPS across a range of different types of applications and use cases across the health and care continuum:

  1. FrailSafe: IPS for Frailty risk assessment by Gruppo SIGLA (IT) demonstrated interoperability with HL7 FHIR IPS to share key health data among healthcare systems.
  2. Expanding Shared Medication Record to IPS by Trifork A/S (DK) aims to build, tune and expand the Shared Medication Record (SMR) established by the Danish Health Data Authority in 2007 with IPS for all Danes when abroad.
  3. CAPABLE tool for active use of IPS by patients in all health and care interactions by University of Oslo, Akerhus Univerity Hospital, Norwegian E-Helse AS (NO) wants to empower citizens to actively collect, manage and update clinical and personal health data as IPS, info leaflets, appointments, diet and nutrition needs, etc.
  4. Care Consumers mediating sharing of their IPS among care providers by Drimpy (NL) allows care consumers can supervise and share their health data in the Personal Health Record available in the drimpy.com eHealth portal.
  5. IPS connecting ambulances to hospitals by North Denmark Region (DK) will use the IPS to integrate the Prehospital Patient Record on tablets used by paramedics in ambulances with the Electronic Patient Record at the hospitals / healthcare systems of all 5 Danish regions.
  6. IPS as part of Telehealth Platform by Ask Your Pharmacist (CAN) will use IPS for clinically support health professionals in unscheduled teleconsultations.
  7. IPS in the Latin American Network for Cooperation in Health Informatics by RACSEL (UY) plans to use IPS for health data exchange turning Clinical Summary Document to HL7 FHIR IPS.
  8. IPS as minimum data set for Electronic Health Record sharing by HL7 ARGENTINA (AR) will deploy the IPS as the minimum data set shared among providers.
  9. MedicalData using pictograms to convey IPS information by MyData S.A. (AR) is using pictograms to convey essential health information in the IPS of a patient for use in emergency situations and alleviate language barriers when travelling abroad.

The award

The finalists were reviewed by an international jury, who has selected the Trillium II award winners for the most innovative use of the IPS.

  • Elaine Blechman, CEO, Prosocial Applications, Inc. & Prof Emerita, Univ. of Colorado
  • Christopher Chute, Chief Research Information Officer for Johns Hopkins Medicine
  • Gora Data, Group Chairman, CAL2CAL Corporation
  • Dee O’Sullivan, Director, netat PatientView
  • Mike Short, Chief Scientific Adviser, Department for International Trade, UK
  • Jeremy Thorp, Past Director of Business Architecture, NHS UK
  • Patricia Van Dyke, Past Chair HL7 International

The Trillium II award ceremony for the most innovative use of the IPS and the official launch of the Global Community of Practice for the IPS will take place at the HIMSS AND HEALTH 2.0 EUROPEAN CONFERENCE (Helsinki, Finland) Spotlight Stage on Thursday June 13 2019, at 14:50.

The future is an IPS community

Beyond the project and the Prize, we will continue to share IPS experiences and tools through the IPS Global Community of Practice for Digital Health Innovation. Visit https://trillium2.eu/ips-global-community-of-practice/ to tell us to participate and share your ideas.

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