Patients with multiple chronic conditions often fall through the cracks in Swedish health and social care, as care coordination is challenging and no one takes full responsibility. One of the root causes is the siloed nature of the system, where different parts of care are isolated and the patient gets lost in between, according to Monica Winge, a nurse with a PhD in computer and systems sciences at Stockholm University.
At last year's Vitalis (a Nordic eHealth fair and conference), she met many representatives from healthcare and social care organisations and companies, who expressed a clear need for more action, less talk, and fewer investigations to address the problem.
"That's when I decided to organise a hackathon, which to me is the ultimate symbol of getting things done," says Monica Winge, who has prior experience organising hackathons.
On November 24 and January 25, around 70 participants from Swedish, Finnish, and British companies, regions, municipalities, patient organisations, and authorities gathered for two workshops. The goal was to develop scenarios and user stories for the Nordic Hackathon on Interoperability in Coordinated Health and Social Care. The main hackathon occurred March 18–20, with nearly 80 participants from 18 companies and 19 organisations (see complete list at the end of the article). The hackathon is conducted within the framework of Health Data Sweden (HDS) >>, a national ecosystem that convenes leading stakeholders from across Sweden to support small and medium-sized enterprises and the public sector, with a particular emphasis on health data.
What did you achieve during this hackathon?
"We aimed to demonstrate solutions for how our target group—patients with multiple chronic conditions—could receive better-coordinated care. We showed that using existing standards allows data to flow between different systems and organisations once you identify the necessary information. Once that's in place, standardisation isn't difficult. During the hackathon, things moved fast—sometimes, it took just ten minutes to solve a problem. We succeeded because we had the right people in the room: clinicians with practical experience, alongside experts and developers working together directly," says Monica Winge.
Tell us about some highlights from the hackathon.
"It was like a big celebration—two days of incredibly happy and satisfied people. The participants were hand-picked for their expertise, and it was so rewarding to hear their discussions. They were inspired to meet others with the same level of knowledge. Many are used to teaching others, but this time they could apply their knowledge directly," says Monica Winge.
What was the most surprising outcome?
"The biggest 'aha' moment was realising that when you put highly competent individuals in a room to solve a problem—and everyone knows what's expected—they quickly find a solution. Someone asked, 'How close are we to creating a patient summary?' A representative working on this issue at the European level replied, 'Give us a couple more days with this team, and we'll be done.'"
"We managed to get several standards, systems, and platforms to work together because the participants were motivated to make it happen. Many of us saw that companies could benefit by collaborating in a way where everyone wins. A major highlight for me was seeing large platforms like Cambio and Tietoevry start agreeing on shared standards," she adds.
How have stakeholders responded to the results?
"Many were pleased to have participated. The hackathon may lead to new business cases, and it's already led to new collaborations and partnerships between companies. Many new direct contacts have been made between people in government agencies, clinical healthcare providers, municipalities, regions, and the Health and Care Network. Most importantly, there's now greater awareness that we have to start from the actual needs of patients and staff," she says.
What kinds of challenges are suitable for solving with a hackathon?
"Complex integration problems. When coordinating many stakeholders around difficult issues—such as the healthcare ecosystem of the future—there's no better way than through testbeds and hackathons. EHDS* is a trigger for this kind of work—and it has to happen. We've already spent enormous amounts trying to make coordinated care and social services work, and we need a complete overview of the patient's care activities. Besides the patients, no one has previously demanded this," says Winge.
What happens now with the results from the hackathon?
"All outcomes are available on our website Nordic Hackathon >> including user stories, implementation guides for various standards, and particularly a guide for FHIR** profiles and user cases. We will also publish a description of the hackathon process—how we initiated and conducted it—which is possibly the most important and requested result for replicating this model efficiently. That report will be published in August."
"Some results have not been made public, as they contain business secrets that may turn into products or services. I've also seen new partnerships between companies emerge from the hackathon."
What role did universities play?
"Stockholm University and Karolinska Institutet contributed knowledge about open architectures and ecosystems, emphasising the importance of starting from patient needs and mapping these to standards. To help prepare the platforms, we also developed test data for the hackathon," explains Monica Winge.
Was there a winner?
"If implemented, the winner would be the persona who represented our challenge: 'Arne Arnesson,' an 82-year-old patient with multiple chronic conditions," she says.
Monica notes that progressing with health data will take a long time. It's necessary that everyone—governments, regions, companies, municipalities, private providers, and academia—understand the importance of working together. The hackathon proved to be an effective format to bring people together. The results achieved in this short time were the kind that many believed would take years—or might never happen without the hackathon.
"At Vitalis this year, I heard the same things as last year—not much seems to have changed. Our hackathon has gotten more international attention—for example in Finland, Estonia, the UK, Norway, Germany, Japan, Bahrain, Austria, France, Greece, and Denmark. Major organisations like OpenEHR*** International, FHIR International, and IHE**** want to collaborate and promote our results. What they're most interested in is how we conducted the hackathon, how we built networks, and how we designed the process. We held a workshop at Vitalis, but unfortunately, interest from Swedish stakeholders was not very strong. However, I believe awareness will grow as EHDS and IPS are implemented," Winge concludes.
The website Nordic Hackathon >>
Link to results presented at Vitalis 2025 >>
Upcoming Workshop with SciLifeLab
An upcoming workshop will be hosted by Digitfor1health, inviting the Swedish government to discuss EHDS and raise awareness of the need for collaborative work. The scenario featuring patient "Arne" will be used. The workshop, led by Sevim Barbasso Helmers from SciLifeLab, will take place on September 3 and is titled: The Road to EHDS – How to Meet the Needs for Sustainable Access and Utilisation of Health Data in Sweden.
Participants came from:
- Companies: Alma Health, Better, Cambio, CGM, Collabodoc, Cuviva, Digital Workforce, Doctrin, Evondos, iGrant.io, ImagineCare, Inera, InterSystems, Leyr, Medrave, Tietoevry, Visuera, Webdoc
- Academia: Stockholms universitet, Karolinska Institutet, Health Data Sweden
- Regions: Region Stockholm, Region Uppsala, Region Västerbotten, Region Örebro län
- Municipalities: Karlskoga kommun, Uppsala kommun, Örebro kommun
- Authorities: E-hälsomyndigheten, Socialstyrelsen, Inera
- Healthcare: Capio, HSVN – Hälso- och sjukvårdsnätverket, HL7 Sweden, Swedish Medtech
- International partners: Sotemuotoilu, Una Oy
Abbreviations:
*EHDS: European Health Data Space Regulation. an EU initiative to improve healthcare across member states. More about EHDS >>
**FHIR: Fast Healthcare Interoperability Resources – a standard for data exchange between healthcare systems. More about FHIR >>
***OpenEHR: An open platform for patient-centered health record management. More about OpenEHR >>
****IHE: Health information exchange. More about IHE >>
Source: Swedish eHealth Agency >>