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Interview with Anders Lönnberg

1.    What does it mean for a nation to be a global leader in e-Health as stated in the governments Vision 2025?

For Sweden it means a couple of things, with the most important being the coupling of all knowledge systems that we have such as the quality registers, EHR, biobanks and other types of statistics systems that the National Board of Health and Welfare (sv. Socialstyrelsen) have.
Thus utilizing these knowledge systems efficiently we can both personalize health care, extract knowledge by identifying important parameters effecting outcomes and also to be used as a reference material in evaluating outcomes. It is a new way to manage healthcare through that coupled knowledge of outcomes, as an addition to traditional education and research. It is absolutely necessary  to include knowledge of outcomes since the total data generated in healthcare will from 2020 doubles every 73th day and the extracted knowledge cannot be incorporated only through education at this speed. Only digitalized systems that couples and harnesses this total data is a solution.

Can you give an example of what this could mean in practice?

Clinical decision support systems have generated a lot of interest in the USA, this is where a patient coming in with a cerebral hemorrhage will have a computer accessing the patients EHR (and in a near future your genome and proteome from biobanks), and using this combined information suggest the best treatment option for the patient. Since these data feed into the same system, there is now the possibility of comparing treatments and outcomes on an individual level, quality assessment, improvement of treatment and feedback to the healthcare practitioner and thus the system and its components self-learn with focus on quality of care.
This self-learning system is well integrated with existing systems that communicates vertically and has improved quality of care through measuring outcomes as aim.

Self-learning integrated systems sounds great but are there any problems that you foresee?

There are of course some road bumps ahead. The major one being interoperability due to the fact that these systems have evolved separately. These systems can feel like a Lars Norén play with many monologues into the chilling Nordic night without anybody listening.  So to address this issue we are taking forth a technical standardization of the about 33 systems that are being used today, with still allowing the freedom to acquire a system from external parties as long as there is interoperability. We are also taking forth semantic standards, thus ensuring the definitions and medical nomenclature are agreed upon. Preliminary results for semantic standards are expected already this summer, but it will take some years to get this practically used, a work that will be supported by Inera who have already tested this with quality registers and EHR, which worked out fine.
 
Besides interoperability of the systems within the healthcare system, what are the plans for data coming in from the outside?

Of course we need to address how consumer products such as APPs and wearables can feed in their data into this system, and that the data holds the same standards and quality as the data generated in the healthcare system.  There are of course going to be so many more areas where these things will apply, since E-Health is a very broad term but the interoperability is the core in defining a world-class system. Sure there will probably be many more additions to the system such as meeting doctors virtually, getting results digitally, receiving more of the care outside of the hospital, more IOT.  Also there will be huge implications for the healthcare professionals in how the care is provided. To exemplify; today 80% cost in healthcare goes to chronically ill, but the healthcare system itself is designed (with hospitals and healthcare centers) for emergencies, and this doesn’t match up anymore. So restructuring is a necessity, but also a source of saving costs.


2.    Who is responsible for formulating the activity plan(s) of the vision to become a global leader in e-health?
In a typical Swedish manner no one has the sole responsibility since we have a decentralized system with The Government with its Ministries, 21 County Councils (who run health care) and 290 Municipalities (who have run home care), as well as Private corporations involved in providing healthcare and thus the total health care budget is what it is. That is why we have the expert committee and me in the role as national coordinator, to negotiate forth agreements and aligning priorities together, and then all stakeholders are responsible to incorporate these in their operations, and learning to share the responsibilities together.

So in a nation without sole responsibility for realizing the governments vision there are critics that raise the question if the decentralized healthcare system has outlived its use and want a stronger centralization in particular on digitalization issues, what are the benefits of the decentralized system with the County Councils?

That is a political question I don´t have an opinion on. I just tend to answer those voices by asking; whether you have 1 or 6 regions, is there any difference? Yes and No, The Government cannot get away from their role in equalizing unjust differences but removing something (read. County Councils) doesn’t solve the problem of inequality. How will you manage healthcare instead (read. without County Councils) and then it is the same type of questions that needs to be addresses as today with the existing system. So to exemplify; if you compare with NHS in England, which is officially a single system, they are headed towards decentralization since this is how the system is arranged in reality anyway.

Actually, I think the question in itself is wrongfully formulated; the question should be what needs to be changed in the system and how. Because then there are openings and solutions that you can build consensus around things that should be nationally managed such as national biobanks. Then it doesn’t really matter how centralized or decentralized the system is, since all stakeholders still need to agree to collaborate. The question can on function be asked, whether it should be national, regional, or local.  

So if the decentralization is not the issue who is responsible for the implementation of the activity plan(s) to reach the governments Vision 2025?

It depends. So if we can agree that something should be nationally managed, it can mean SALAR, The Government, or that they do it jointly in an agreement which is the common way things are done in Sweden. This topic is actually something I´ve forbidden the committee to discuss in open since it leads to stakeholders to protect their interest and thus making collaborations harder. If we instead find a set of parameters around to discuss upon in order to find a solution it improves the negotiations process and success rate. This way you don´t end up in zero sum thinking, and this is the main reason that information on responsibility has been scarce.  Same thinking applies to questions regarding the Ministry of E-health and Inera, that of course has different objectives and agenda but we need to find good solutions together in areas with overlap. The vision comes first, not handing out responsibility.

3.    So with no clear responsibility handed out in order to find common ground and reduced risk for impasse, is there a budget for the implementation of the activity plan(s) once they are set and responsibility agreed upon?

No governmental funding is available now, and the reason is that these things should normally fall in under the County Council budgets for the operations, which includes IT investments.  That is of course a bit troublesome since the IT investments can be bound up in a way that doesn’t allow for investments in interoperability on a national level. If we could have national standards and in the long-term European standards that would be very helpful.

Funding for new establishment of things that are not maintenance of operations so to say,  that will need to be taken from the Research Bill (sv. Forskningspropositionen), but in general the government feels that they do have some responsibility to aid with finances in things that are new establishments. Such funding has already been received for incubators nationally for example, 22 million SEK was handed out for technical validations, some funding for proof-of-concept and more earmarked funding can be expected for specific activities linked to the vision rather than an overall budget (since there is no general Swedish health budget).  So the way forward is co-funding from Government, County Councils and private stakeholders.