Collaborative Data Ecosystems for Public Sector, conversation with Maria Bäcklund-Hassel, Senior Advisor, eHealth Agency, Sweden

Data sharing in healthcare may have been a niche topic before COVID, but it is since come to the forefront of the global conversation around digitalization and European data spaces. The ability to leverage data exchange in order to master information-led environments in for quick and efficient decision-making in crisis mode quickly became an evident desired future when the pandemic hit us a few years ago.

Continuing the Capgemini Conversations series around data sharing in the public sector, Pierre-Adrien Hanania, Capgemini Global Offer Leader for Data & AI in the Public Sector, now travel to Sweden to discuss the subject with Maria Bäcklund-Hassel. – she is the International Coordinator for the eHealth Agency of Sweden, a country which has been a leader and early adopter of digitalization in healthcare.

First, tell us a little bit about yourself!

While my career began as a pharmacist, I have worked with healthcare-IT for more than 25 years. I have worked at the eHealth Agency for more than 12 years and I work as a Senior Advisor and International Coordinator.

Most of my experience since joining the agency has been working closely with the agency’s different divisions while representing the eHealth agency abroad and connecting specialists in the agency with the global ecosystem.

Sweden has been a leader in the digitalization of healthcare for a long time. Your system has created best practices in many areas. Tell us more about what this looks like now.

The 21 regions in Sweden are autonomously responsible for providing healthcare systems. There are of course national laws and regulations that set the responsibilities, but any specific technical requirements would overstep their autonomy. In this vein, Sweden has stored digital health data for a long time;

however, it is mostly stored locally. We have a number of national registers stored at national agencies as well, but the bulk of the information is not stored with the government.

In this way, the European Health Data Spaces (EHDS) proposal is challenging for our regions because it will cost them some autonomy. However, we all know that our current system is not working in an optimal way for sharing health data. And we are not alone in having a decentralized healthcare system, other countries operate the same way.

Many experts have talked about other technologies, such as AI, experiencing different seasons where not much movement or support is happening around implementing a topic the “AI Winter” for example. Is there momentum now for data sharing? If so, why now?

The COVID-19 pandemic has been a great initiator of momentum around data sharing – how great would it have been if we could have shared information then? To see the level of vaccination, and how the virus was spreading throughout Europe-this type of data is critical for us, it is not just nice to have.

Another reason is the reality that workers are leaving healthcare, which means individuals will have to engage with their own healthcare in a more meaningful way. They cannot do that without access to their own data.

What do you see as the main benefit of data sharing? At Capgemini, we see four key benefits: citizen engagement, cost reduction, insight multiplication, and interoperability (i.e., process efficiency).

I agree with your analysis of the benefits. It is interesting that those benefits can also be seen regardless of who is sharing the data, and for what reason.

In addition to that, we have a fact that applies to Sweden and other countries of our size.

We are a small country – just 10 million people, divided into 290 municipalities, that provide welfare services and 21 regions that provide healthcare. They all need data to make good decisions and to use for research.

These communities are so small that you really need to pool data for any benefit. Often, even data pooled at the national level can be lacking, requiring more from the rest of Europe.

On another note, our culture is very digitalized. We do so many things online, it only makes sense that we should be able to access our healthcare and our health data in the same way.

We have thought a lot about hospitals sharing data, more around research addressing rare diseases. What are the obstacles you see preventing progress in data sharing?

Today the challenge is that we can’t require the healthcare system to standardize, and different hospitals often store their data with different standards, if any standards at all. Sharing between hospitals and primary care providers was previously, if not impossible, at least exceedingly difficult because of the lack of interoperability. Healthcare providers are furthermore often required to share information with care providers in other regions or other countries because the patient moves.

We need to stop thinking about systems and start thinking about information.

Our politicians often suggest that we need one unified system, but at the end of the day, we need to focus on the information instead [since systems are constantly changing].

Beyond this, our legal landscape is complicated: the digitalization process happens faster than the legal process, but work is being done. We currently have three main commissions of inquiry regarding health data and interoperability, where the government has assigned special commissioners to write reports with suggestions on improvement: one report on how the country can participate in the European Health Network services, another on how health data should be seen as a national asset, and a third on how we can legislate interoperability.

How do you see the social context playing a role in data sharing in Sweden?

There are some misconceptions about what is possible now in healthcare because tech has already played a role in other sectors for some time. The challenge in healthcare, as well as any area that handles personal data, is data protection before we can even tackle more sophisticated applications that are already so common in other areas. Data protection is a particularly good thing, but it is complicated and interpreted differently by different actors and stakeholders.

As long as you are open about what you are doing with the data, it is usually not seen as a problem by the public. We have been incredibly careful to protect the trust that we have earned, but we know that it could become an issue if we misuse that trust.

Also, as a patient, if I have access to my own data, if I can see who has accessed and used it and can choose whether I want those stakeholders to continue to have access, it will improve the understanding and acceptance of sharing my data.

Lastly, we need regulatory sandboxes to test legal solutions. Just like technical concepts, we need the space to test different approaches.

Do you observe any up- or re-skilling in the healthcare sector to include future digitalization?

There is some discussion about how to integrate digital skills into the education of healthcare professionals. Today, much of the training in daily usage of different implemented solutions is provided by the companies.

For the patients and healthcare staff of the future, it is important that the basic training of healthcare staff conveys that e-health is more about how and what is made possible by technology than the technology itself.

The potential of e-health can best be realized if it supports independence, for both the healthcare staff and the patients.

Developing a national digital infrastructure and digital health services with equal access for all citizens is a priority for our government.

Talk about the role of new players in the healthcare space. Tech startups, for example, can be very creative in facing challenges similar to the ones you’ve mentioned.

Yes! A few years ago, a private company created a service we call “Net Doctors,” which gave people the opportunity to speak to doctors very quickly by using an app. They essentially made one region’s resources available to the whole of Sweden by marketing their video consultation service.

And due to the hugely positive response, a shift in perspective has started to happen in other areas as well.

For example, more and more doctors are happy to see and trust a blood pressure app on your phone, while others will still require manual testing in the office.

We have a national strategy for AI, and individual agencies have started to develop applications for their own data. For example, the Medical Product agency has developed a tool to enable patients to document their first reactions to a medication. The AI application reviews this material for any indicators of more serious side effects of medication, which can often be missed.

What is the Swedish point of view on the ongoing Health Data Space developments within the EU?

There is a positive perspective on these developments from my agency!

In general, agencies at the national level are quite optimistic. However, while regions can see that this will help them, there is the concern that it shifts the responsibility from a regional to a national and then a European level. This could be construed as an indirect violation of their autonomy; and, at the national level, we share the same concerns because we see the shift from national engagement in the eHealth Network to the proposed board that will replace the network.

Some specific aspects still need to be worked out; for example, how will this work for the private sector? They need access to health data from research and clinical trials, which is currently included in the regulation of the Health Data Space.