Independence Day

Man pushes stroller up tracks covering stairs in StockholmEvery time I travel abroad, I fall a little bit in love with the country I visit. My trip to Sweden was no exception. I love how bikers have an equal right to use the streets. I love how there are stroller tracks on public stairs to make it easier for parents to navigate. I love how strong Swedish coffee is — even on airplanes. I love how everyone greets each other with a friendly “Hej!” (“Hey!”)

The other effect that foreign travel has on me, though, is an even deeper love for my own country. This time my appreciation for the U.S. was met and even surpassed by the people I met abroad.

I did not expect to meet Swedes who knew more about current American TV shows than I do. I did not expect to see a parade of vintage American cars cruising Stockholm streets on a Friday night — I lost count at 50, including one with a horn playing “Dixie.”

Vintage American car in Stockholm

Vintage American car in Stockholm

I also did not expect to find that Sweden is struggling with some of the same health information technology issues that we face in the U.S. Although it is a small country — about 9 million people — and they have a single payer for health care — the government — they unfortunately have many different regional systems which cannot exchange data.

I am hoping some of my Swedish friends can post comments or point me to information about the history of the decisions which led to this situation. Or, since it might be more useful, I’d love to learn more about how they plan to navigate toward a fully integrated, interoperable health information system since that is what we are all seeking.

I wonder if the choices they made to create stand-alone health IT systems might be rooted in the same fierce independence that characterizes American culture.

13th century wall surrounding Visby, on the island of Gotland, SwedenVisiting the island of Gotland, I walked around the stout wall surrounding the town of Visby. It was built in the 13th century to protect the inhabitants from invaders and was one of the only places I saw multiple Swedish flags flying, all along the length of the wall. I was struck by the sense of pride it stirred in me — and I’m not even Swedish! Could there be something in the culture that demands regional — even tribal — independence?

Then again, I was visiting the island during Almedalen, a festival of open debate, honoring Sweden’s long history of allowing regular people to question those in positions of power. It is a collective, inclusive event and speaks to the possibility that Sweden is — or could be — an incubator for a collective, inclusive health IT system.

What aspects of American culture can the U.S. turn to in this time of need in health care? We also have a history of questioning authority, of joining together to work toward a collective good. How might we tap into that patriotic spirit to solve our current problems?

These are my questions — and my hopes — this Independence Day.

17 thoughts on “Independence Day

  1. Well, of course, now we’re off and running with (I’m certain) multiple threads of response.

    I’ve never been to Sweden – my first trip is next month – can’t wait to connect with super-e-patient Sara Riggare!

    My first response here is going to be a radical branch: this weekend (Fourth of July) is always the international barbershop harmony convention. Did you know this American musical tradition has been adopted in Sweden?

    And conquered?

    This week in 2012 the Swedish barbershop quartet Ringmasters became the first-ever world champion barbershop quartet from outside the US.

    And they’re from the (not just Sweden) Society of NOrdic Barbershoppers, SNOBS, in Helsingborg, which has eight quartets in the contest going on right now in Vegas.

    So that’s MY first reply.

    • Wow! I just watched a video on their FB page — amazing singers.

      I fear that many of my contacts in Sweden are now on vacation, recovering from the intensity of Almedalen (18,000 people; 3,000 seminars; countless “mingles” – their word for networking events). But the conversation on this blog goes on for days, even weeks, so I’m hopeful we’ll get something started.

      A highlight of my trip was indeed meeting up with Sara in Stockholm, as well as another super e-patient, Cristin Lind, who blogs at Durga’s Toolbox.

  2. I’ve been reading a lot about evolutionary biology & psychology lately, and I think the tribalism you note is increasingly prevalent in the US (and, likely, most other regions that have been affected by the economic downturn of ~2008). I believe tribalism is one of the reasons we are not likely to be “joining together to work toward a collective good” on a scale that extends beyond our tribes (however we might define them).

    I imagine you are familiar with the recent Pew study on Political Polarization in the American Public. I don’t have much hope about constructive collective action in this country, at least not on a national scale.

    Having visited Sweden and other Scandinavian countries, I do believe they enjoy a much stronger sense of collectivism. An episode in The Happy Movie profiled a co-housing project in Denmark that I find difficult to imagine replicating in the US. The 2013 World Happiness Report lists Denmark as the happiest country (Sweden is listed as the 5th happiest country).

    I suspect that the lack of collectivism – and strong sense of isolation (sometimes characterized as independence) – prevalent in this country is a significant factor in the high levels of stress reported in a recent poll by NPR, RWJF & Harvard.

    In any case, I don’t have much hope for being able to import many solutions from Sweden until/unless we can cultivate a stronger sense of collectivism in this country … but I do hope you continue to enjoy your time in Sweden!

    • Riffing on Joe’s note … I’m in British Columbia for a week, on Vancouver Island; instead of the too-common fly-in-speak-fly-out, we’re spending a week of working vacation for the wonderful scenery. But I’m also getting a dose of what life is like when people are just plain courteous to each other.

      It’s not just that drivers stop BEFORE a pedestrian steps into the street. That by itself is hard to imagine for an east coast person. Here, people on the road just aren’t in a BFH (big fat hurry), and it’s all FINE, people get to where they’re going. Heck, yesterday I saw a driver making a turn and not noticing an oncoming pickup truck; the truck slammed on its brakes and didn’t even TOOT its horn.

      Does this reflect an absence of fierce independence? An absence of “Get out of my way!”?

      My singer-sister Suede has a joke, which you’ve probably heard: How do you get 300 Canadians to promptly get out of a pool? You holler “Okay, everybody out of the pool!”

      Can’t wait for my Sweden trip next month! I wonder if I’ll be there on car night.

  3. Organizational Challenges and Reactions in Sweden’s Tax-Funded Health System

    Sweden has a preponderantly publicly planned and structured health system. National government bodies set standards, regulate key processes, and (increasingly) evaluate outcomes while locally elected county and municipal governments are responsible for both financing and delivering services. The right to both health care and social services is linked to citizenship while financing is through taxation and minor user fees.

    With regard to individuals with multiple chronic conditions, one might anticipate that in Sweden the integration of care issue could be readily resolved by administrative means, given its publicly funded and planned system. This however has not been the case. A central obstacle in Sweden is in fact structural: clinical health care services are the responsibility of the regional-level county councils, while care for social needs – support in the home, nursing home, and/or other care and support defined as “non- medical” – is the responsibility of the local municipalities. Principles established 1862 in Sweden and can be compared to Bill of Rights, tenth amendment, in U.S. (1791). Daily care for chronically ill patients thus cuts through two quite different public authorities, and reviewers often describe the resulting situation as presenting a real challenge to get services working swimmingly and with adequate quality from the patient’s perspective.

    A second coordination dispute lies within the county council’s area of clinical care responsibility. The county’s medical services are divided between two quite separate sub-sectors within the public system, namely the primary care system as against internal medicine, surgery and consulting subspecialties. In rural parts of the country where population is sparse and hospital care has had to be restructured to be able to meet needs in a sustainable way, integration between these two sub-sectors presents real challenges.

    In more urban areas, structural reforms of the health delivery system have been developed according to a formula of “near” care. This approach relies on a variety of instructions and inducements to convince the three main actors within the public structure (primary care, specialist care, and social care) to cooperate functionally and create “chains of care” (seamless care) for chronically ill patients.

    Different “tools” on the clinical side help stimulate this integration, such as evidence based care protocols and guidelines defining the most common disease categories and their treatment. These patient management tools are nationally developed, however it is regarded to be important that they are shaped into workable practical “aids” locally. The process of developing these aids becomes an important part of the process of getting different actors in a locality to work together to better integrate care. Different types of inducements including economic (payment structures) are also being used to a greater extent.

    More generally, the national government has introduced financial inducements to the county councils to stimulate better and more rapid access (funding is allocated in accordance with targets for waiting times). National government induced health reforms in recent years also include an emphasis on increased variety of providers within the tax financed health system and under county council control. A mandatory “choice of care” for the citizens within primary care has been introduced whereby different actors (public and private) can provide services as long as certain quality criteria are met.

    Primary care services are now provided by a mix of public and private actors. While this structural shift toward private provision of first contact primary care services is not innovative by the standards of social health insurance it represents a major change of consciousness and structure in the Swedish context, by explicitly introducing market-style competition for patients inside what had originally been conceived as a catchment based, public health dispensary model of care. Thus the Swedish example, while emphasizing the introduction of structural change to generate better integrated care of the chronically ill, also highlights the growing role of competitive approaches to professional groups that deliver those health services as a strategy to potentially improve access to and the quality of integrated care services.

    The struggle to find a way to modern health information technology has followed more or less the same principles resulting in a huge number of local projects missing a unified idea regarding interoperability and exchange of data.

    • Thank you, Mats! I need another cup of strong Swedish-style coffee before I can fully absorb all the lessons you shared.

      For those who have not yet met him, here is Mats’s bio at Kairos Future, an international consulting and research company. You can follow him on Twitter, too: @MatsO_Future.

  4. Well, first I have to thank Mats Olsson for taking care of the answers to your technical questions. As someone deeply involved in US health care improvement movement who moved to Sweden a year ago, I too have spent a lot of time wondering how two societies which have such different contexts in terms of size, socio-economic diversity, accessibility and payment structure can be grappling with the same issues around patient-professional partnership?

    My own experience of of working in both cultures suggests to me that the reason we have so much in common is because we share a root cause — a paternalistic medical model that has created a culture of doing things to or for patients, not with them. In this sense, the transformation of health care is not a health care issue at all, but a social justice and democracy issue, as we can see from so many parallels with other social rights movements. Forward-thinking patients AND professionals in both countries have been trying to tear down the silos, the antiquated systems, and the outdated perspectives that resulted from that paradigm. One country may appear more advanced than the other in certain areas at certain times, but neither one has escaped the medical model…yet.

    Those of us in Sweden working to make the system more equitable and effective were lucky to have you come visit last week. Every nation has something to teach, every nation has something to learn. It will be exciting to see what ideas you take back with you too. Thanks for sharing & learning together!

    • Hi Cristin,
      I am glad to see that you are joining the discussion 🙂
      I am somewhat thrilled to see how it will develop.
      Today I have worked with the IBD2020 project and one of the eight important aspirations, Aspiration 5:
      All patients who have IBD should have opportunities to become more knowledgeable about their disease and the various treatments and professional support available to them, so that they understand the goals, risks and benefits of treatments and can, if they wish, become more actively involved in the clinical management of their IBD.

      • Hi Mats – I hope I get to meet you during my visit next month!

        Aspiration 5 is great; it sounds like a template for every patient’s rights, with every condition – yes? It sounds like what we’d have if participatory medicine were fully developed, yes?

        In fact I’d look at the *absence* of any factor in Aspiration 5, and say “How can healthcare possibly work well, without this being present?”

  5. I also want to thank Mats for the lesson in Swedish healthcare. Born and raised in Sweden and diagnosed with a chronic illness the first time almost 30 years ago, I honestly had no idea about a lot of what Mats described… And I can tell you, it’s not because I am not interested in the topic. I COMPLETELY agree with Cristin’s analysis: Swedish healthcare is as paternalistic as they come and I am sorry to say that we are still VERY far from seeing a systematic change. We’ve all heard “you can’t change the paradigm from within the paradigm” and I believe that is even more true when it comes to healthcare.

    Mats, I am very pleased to hear that your project is moving forward and I hope it can help drive the much needed change forward. However, when reading what you write about IBD2020, I cannot help wondering what Aspirations 1 through 4 are and what the IBD patients in the project thought about having patients’ knowledge rated no higher than as number 5?

  6. The journey from paternalism tio partnership

    Hi Dave, I will be at the Digital Health Days and I hope I will get an opportunity to meet you there. I had a presentation there last year.
    Thank you Sara, interesting to see that I could contribute with some facts to such a knowledgeable person as you are.

    Regarding the IBD2020 initiative (IBD 2020 is a global forum for patients and professionals to discuss how to improve standards of patient care) I have been involved in the last year we have done the following so far:
    – A Global TrendWatch produced 2013 by our company Kairos Future
    – Patient surveys, conducted by Kairos Future in Canada, France, Italy, Spain, Sweden and UK carried out in summer 2013. Surveys in Finland and Germany carried out in April/May 2014. All in all, over 6 000 patients from 8 countries.
    – An international meeting with representatives from patient associations and IBD physicians from 18 countries in Oxford, UK, september 2013. Meeting report produced by Kairos Future in a co-operation with professor Simon Travis and Richard Driscoll. Meeting report: http://ibd2020.org/more-about-ibd2020/
    Among other things in the report you will find the total list of (eight) aspirations.
    – Now we are planning for the next step. The IBD development project is now going into next phase – a real co-production of IBD health between healthcare and the patients using apps, sensors and a new digital infrastructure. Created together with Telia, the telecom operator. We are now creating a new standard how to do it.
    Data produced by the patients, together with clinical data from the quality register, will be used for analysis.

      • Sara, I totally agree. In the IBD2020 initiative there is no room for the sponsors to interfere.
        I also think about the IBD2020 initiative as an ice-breaker to inspire other medical areas. I call it an initiative instead of project especially now when we start to implement the real co-production of health. Now we are thinking long-term and then you have to avoid conceptions like “project”. And with that in mind TRUST is a very essential banister.

  7. Susannah’s point about the lack of interoperability in Swedish HIT is one of several issues facing this most advanced country. The other is a bit of a paternalistic culture that is not all that inviting when it comes to empowered patients having a seat at the healthcare table, because, after all, the experts always know best. So, for example, a patients lack of immediate access to their records rarely seems to even be a concern.

    In 2009 I was a speaker at the Swedish-American Life Science Summit, attended by many of the titans of Swedish healthcare: leading clinicians, industry people, consultants, government officials and assorted other wonks. I asked, “How many of you have your health records maintained electronically?” 100% raised their hands. I asked, “How many of you, if you were a patient, could access your records?” No one could. And many in the audience seemed puzzled that I should even see this as a problem!

    Similarly, as in most places outside of the US, direct-to-consumer (DTC) advertising of prescription drugs and health services is illegal in Sweden. They see this as advanced, a common belief in the US, too, but one I disagree with. The reality is that in advanced Sweden, Swedes consult the US sites to get information. Suppression of speech doesn’t work, wether it is commercial or non commercial speech. Regulation should be focused on disclosure of sources, but enlightened government should do more to encourage the free flow of information, rather than try and suppress it. In several ways, the US is ahead of Sweden when it comes to recognizing this. Thankfully we all have relatively unfettered access to the Internet. Let’s hope it stays that way but never take it for granted.

    • Peter, thank you for sharing this perspective!

      When I received the invitation to speak at Almedalen I thought to myself, “What could I possibly teach people in Sweden about health care delivery? They are so advanced!” But I did some research, talked with Sara Riggare, and realized that I had important news to share: that the information people hold about themselves, about their treatments, about their loved ones, is as vital as clinical knowledge when creating a rapid learning system for health.

      In case you haven’t seen it yet, the video of my talk is now up. You can watch it here:

      http://susannahfox.com/2014/07/15/how-did-we-get-here-and-where-are-we-going/

      Around minute 33 I say: “What we’re seeing is an opening up of the funnel of information, the received clinical knowledge and we are opening up this other funnel that is coming up from the bottom of patients and caregivers.”

      There was an audible reaction from the audience when I said this and made those hand gestures to illustrate the point. Honestly, I was so pleased to have brought something useful and to have made this connection that I almost stopped to say, “Thank you — let’s talk about why some of you just gasped.”

      But I stayed in the moment and went on, eager to share more, and now, here we are, able to discuss it online, weeks later, and learn together some more.

      • Wonderful talk, Susannah, and I can’t tell you how often I used to feel like Edwin Murphy being locked out of health information, having to sneak around to get it! When we launched Medscape in 1995, one clear (and controversial) mission was to bust out of that model — to make sure that everyone who registered could access the same full-text information their doctors and other clinicians were reading — at no cost. As soon as we could, we added free Medline and drug searching. Had I known your story at the time, we would have called this “Murphy’s Law”:)

        Perhaps the best news is that those who predicted that clinicians would run in horror at a platform for both clinicians and patients were dead wrong. You can read the story about this here http://www.medscape.com/viewarticle/504736 (tip: select print mode for easier reading). An irony of the success is that many clinicians who love Medscape incorrectly assume I am a physician.

        Listening to datapoints is another subject you discuss at about Minute 41. Patients in the US have rights to their data, thanks to HIPAA and other regs. But how many times are patients handed a CD/DVD of their digital tests at the time they leave the clinical site after an encounter, something that could be done quickly and inexpensively? While we are making progress, the spirit of sharing has a long way to go before empowered patients are given a meaningful seat at the table as a matter of routine care.

        Thanks again for all you do, and an excellent talk

        • Thank you so much! I loved pulling together all these stories and themes in one place — and of course was inspired by the beautiful surroundings, as well. That’s the magic of sharing ideas in public — you never know what will happen.

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