PubGene at Norway’s #eHelse2019 Conference

  • Amelie 

Recently, PubGene’s own Amélie Marseille attended the annual eHealth conference organized by the Data Association and the Medical Association of Norway. This year’s theme was While We Wait, in reference to the Parliament’s report on “One Citizen, One Health Record” launched 6 years ago.  Six (6) years’ waiting can seem long, and some of the speakers shared with us that they were “served big appetizers but still waiting for the main dish”. Meanwhile, Christine Bergland, CEO of the Norwegian Directorate of eHealth, is not waiting for anything: “we are in the middle of it, going at it step by step with full energy”.  

While Norway has yet to realise its full commitment of achieving full connectivity across the health and care services, it has made some strides. For example, the Norwegian Directorate of eHealth was established in 2016 directly under the Ministry of Health and Care Services. One key milestone amongst more to come.

One Citizen One Health Record is worth for the wait 

One Citizen, One Health Record Requirements
One Citizen, One Health Record (2017)

Indeed, the Health portal Helsenorge.no is getting more and more connected functionalities.  Conference participants saw a steep growing curve representing actual usage by citizens, with 5 annual visits per capita. The population is now communicating digitally with their General Practioners (GPs) for appointment booking, prescription renewal, message to the reception desk and MD consultation via secure text messages (those services are called “Digital Dialog”).   Soon, video consultation will be part of the public healthcare service too.  

A Look Into the Future 

The centralised Summary Care Record is now ready to show the citizen’s medication, critical information, and hospital documents. This centralized record is available to GPs, emergency wards, hospitals, national registries, home and residential care, and the citizen himself. Even a citizen’s digital treatment plan is designed, showing the healthcare team participants, the citizen’s preferences, the treatment goals and actions, and self-reporting.  

The Personal Connected Care program (Welfare technology) [1] is building a hub where we’ll be able to connect non-intrusive sensor data. The Health Data program is making an API (application programming interface) to receive, harmonize and analyse citizen data across all national health data registries. Norway is also building a common infrastructure (grunnmur) with building blocks (to manage single-sign-on, authentication, consent, etc.) and standardised code sets. Everything is of course based on open standards (FHIR – with Norwegian profiles), for full interoperability.  

eHealth Norway is busy, very busy. Hiring ads for new software architects, functional architects and project managers are continuously popping up on Finn.no and LinkedIn.  The future is being built now.   

So Why the Discontent? 

So, why do doctors and medical informatics people feel like they are waiting? While the Directorate of eHealth is developing modern technology to facilitate connected health and interoperability at the national level, this has yet to reach the numerous types of healthcare institutions and healthcare professionals across the country. Each GP office, municipality and hospital has its own local EMR (Electronic Medical Record) system , one of the two types of EMRs that currently exist: the first, based on older technology, made for selected healthcare segments and the second, new EMRs, designed as a platform to support several healthcare segments but are still at the start of the long road of being rolled out to more sites.  The old systems know that they will eventually be replaced, either by their next-gen version, or by a newcomer competitor, or by the state’s solution itself. It’s a matter of time, but how long is a matter of speculation… while we wait. 

As of now, 26% of GPs use “Digital Dialog” with their patients on helsenorge.no. This service existed seven (7) years ago through private vendors, and has been free to use through the national platform since 2016. Why is this number not higher? Are some of the GPs still using private solutions (not accounted for in this number)? Or don’t they want to adopt this functionality with their patients? The Directorate of eHealth subsidized the implementation of the functionality in three (3) major EMRs for GPs. That’s also how the electronic prescription functionality has been introduced. Meanwhile, new EMR vendors arrived, attracted part of the GP market, and those don’t have national implementation in place yet. That did not stop the GPs from switching to those new vendors.  Instead of cohesion, we’re starting to see momentum being eaten away at by fragmentation. 

Castles in the sky

The Directorate of eHealth can develop as many connected functionalities[2] as it wants, but they will only live up to their purpose when they are integrated with EMRs across the country. The technical integration also needs attention; it must be intuitive and easy to use healthcare staff. Some conference participants wondered, ”are we building castles in the sky?” As Petter Hurlen said, the focus should be on the citizens and on the clinical needs, not on [lofty] systems and technology. The technology’s role is to help healthcare professionals help the patient. For that, citizens and clinicians must be involved in defining their information needs.

The Health Platform – a unique possibility 

To solve this multi-vendor issue, Norway is testing the concept of one unique EMR:  the central region (Helse-Midt), introduced us to their new regional solution for specialist and primary care (Helseplattformen), based on EPIC, a commercial EMR vendor from the US.  

This same vendor has already (somewhat painfully) been implemented as the national solution in Denmark and in Finland. Did Finland learn from Denmark? They thought they did, but Johanna Stenqvist (Apotti, Finland) came to tell us that they run into challenges too, despite investing a lot of time in studying Denmark. Is Norway going to learn from Denmark and from Finland? Only time will tell.  

Helseplattformen roll out started and is planned to be completed by 2022.  Per Olav Østbyhaug (Chief medical officer for specialist care at Helseplattformen) managed the audience’s expectations. As we are now starting to climb the first hill, we don’t see what’s down the valley after the hill on the horizon. Marte Walstad (Chief clinical information officer at Helseplattformen) is optimistic.


Olav Østbyhaug (Chief medical officer for specialist care at Helseplattformen) presenting the role of “hybrid employees”

Subject Matter Experts are being hired and trained in Medical Informatics (“hybrid employees”) and are specifying how workflows must be configured for their local and specialty needs.

Subject Matter Experts are being hired and trained in Medical Informatics (“hybrid employees”) and are specifying how workflows must be configured for their local and specialty needs. This platform is going to improve the information flow across all healthcare actors, replacing the current documentation system with a process support system also available from mobile devices. Data will be structured and allow for decision support and healthcare quality and safety improvements. It’s about time: healthcare will see the end of PDFs and catch up with a decade of lagging behind other industries in adopting technology for increased benefactor engagement and productivity.

Build or Buy… at What Cost to Nordic Innovation? 

I wonder (and I am not the only one [3]): how open is such a platform from a commercial US vendor?  Is it ok that the Scandinavian’s public healthcare is investing so much money on a unique commercial US vendor they become dependent on? Won’t this monopoly kill the drive for innovation that we are so looking for? … and will the healthcare staff really tick the right boxes for structured reporting?      

Hopefully, EPIC, who has opened to third parties in the form of app stores in other countries, could let hospitals and other healthcare institutions expand on their functionalities by encouraging competition from Scandinavian niche content providers, who understand the local specificities. Perhaps, the perspective from smaller, innovative app developers can enrich the experience of both healthcare professionals and citizens, at a faster pace and at a lower risk than a monolithic solution can do. 

I’ve always thought that the role of the nations is not to enforce a unique solution. The important thing is that all solutions can talk to each other and reuse the same data in a meaningful way. Today, the technology exits for it. We need the nations to create legal and economic frameworks that enable it in a secure and sustainable manner, based on the citizen’s informed choice of provider.  The common infrastructure (grunnmur) could open to the industry in all fairness – i.e. including to new commercial vendors, with a transparent ehealth quality certification framework and incentives to help healthcare institutions and citizens to choose safe and sustainable solutions. 

Where are the researchers and bioinformaticians in the patient pathways? 

The Norwegian national strategy is clear: we want better coherence in patient care, we want to deliver healthcare in digital and optimized ways.  What struck me though, is that, although there were several talks in this conference related to the usage of technology in clinical trials, precision medicine and AI, neither the researchers nor the biotech are represented in this discussion about presenting new patient pathways. Researchers are shown as potential users of the new health data registries, but not in contact with the individual directly. 

With the paradigm shift brought by precision medicine and AI, new standardised patient pathways will help realise the power of personalised medicine.

Patient pathways are the description of one or more patient contacts with different part of the healthcare system in relation with a patient healthcare need. Traditionally, it includes general practitioner visits, hospital stay, rehabilitation and home and residential care.  Patient pathways aim to be the quality-assessed and evidence-based way of consistently treating the right patient at the right time and in the right way. Successful patient pathways promote continuity, multidisciplinary collaboration, and patient shared decision-making. Standardization enabled by patient pathways improves outcomes and contain healthcare costs, much needed by the society and healthcare insurances.  With the paradigm shift brought by precision medicine and AI, new standardised patient pathways will help realise the power of personalised medicine. Yielding this outcome requires patient pathways that facilitate patient transfers between research and clinics[4], and to tap into the power of today’s technology to base care delivery on real-world health outcomes and performance. Researchers and bioinformaticians are today’s actors that can accelerate the making of such personalised therapies a reality in standard care delivery. Practical and legal barriers that prevent such patient transfers should be reduced; translational research[5] should gain attention. This is necessary to realise the potential of worldwide scientific progress, and to make it available to as many patients as possible, not only to the wealthy and well informed.

(For more information about eHelse2019, go to:  https://event.dnd.no/ehelse/program-2019/)


[1] https://ehelse.no/velferdsteknologi

[2] https://en.wikipedia.org/wiki/Connected_health

[3] https://beta.legeforeningen.no/contentassets/9030375a5fff460ea7c037ef98f90ad2/rapport-modeller-for-e-helseutvikling.pdf

[4] https://www.forskningsradet.no/om-forskningsradet/publikasjoner/2018/handlingsplan-for-forskning-og-innovasjon-innenfor-persontilpasset-medisin-2018-2021/ figure 1, page 3

[5] Integrated team of experts who are focused on translating useful information from laboratories to doctors’ offices and hospitals. It’s a “bench to bedside” bridge, specifically designed to improve health outcomes. See also – Cohrs RJ, Martin T, Ghahramani P, Bidaut L, Higgins PJ, Shahzad A. “Translational Medicine definition by the European Society for Translational Medicine”. New Horizons in Translational Medicine. 2 (3): 86–88. doi:10.1016/j.nhtm.2014.12.002 .