Thinking out loud about health

Hi all,

Still finding my way around the new site, so excuse me if this is not the right place to talk about this. And, while on that subject, I’m very impressed by the gorgeous interface. Bravo!

So, health …

After http://edgeryders.wikispiral.org/help-build-edgeryders-p2p-school-resilience/mission_case/report-resilience-session-resilient-health- the work I did on severe pandemics was translated and published: see http://www.plescamac.com/index.php?option=com_content&view=article&id=89&Itemid=499 or the short url http://tinyurl.com/fluscim (same destination, just easier to remember) - we could use #FluSCIM if people want to.

About a week after the English version came out, the new flu H7N9 (which popped up in China just a month ago) reminds us how emerging diseases can bring nasty surprises, so it’s not like work in that area has ended at all. Sigh!

In any case, many of us also feel there are more immediate concerns with how “health” works across Europe (and elsewhere, but hey, this is EdgeRyders.eu). A diversity of health systems - warmly described as “wicked systems” - have grown in size and activities in the past decades, and now many of those systems are pretty disfunctional because the playground has changed (demographics, technology, economy, diseases themselves, etc) and the systems are being changed by uneven pressures, not necessarily for the better. In some places, more money meant more health until it didn’t (think too much surgery), and the way back (less money) doesn’t look nice at all (excessive cuts or simply shortsighted ones). The field is blistering with needs, offers, tunnel-vision and plain confusion. We may need more connectivity and flexibility, but beyond that I honestly don’t know.

So here lies an opportunity, maybe, but the challenge is so huge I personally don’t even know where to start. I’m not happy at the thought of starting anything too specific right now, which is why I’m chatting at the edge of the edge (this agora is it, right?). So, should I wait until I have sorted out some kind of a strategy, or at least a handful of ideas to then select from? Should I create an admittedly vague group here in EdgeRyders, laying out (in pencil) whatever views I may have right now, just to start a conversation about views and possibilities? I guess it’s the second, but if not then I’m happy to go with the first, letting it mature a bit more. As the saying goes: “no hurry, it’s only the end of the world”.

Thanks!

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recent conference on health systems and the economic crisis

http://www.euro.who.int/en/what-we-do/event/oslo-conference-on-health-systems-and-the-economic-crisis

(still undigested)

Go for the group?

You could use it as a process documentation space, plus if there’s an ongoing conversation on this before the next Lote we’ll be able to design a session around it because there’s sign the community is interested and wants to explore it further.

I read your published manual and it’s quite easily understandable for a non-trained eye, well done Lucas!

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thank you, and yes

Thanks for the feedback on readability, as it was one of the requirements: as easy to read as an “exit” sign, non-intrusive, but ready to be read in a hurry just in case.

Yes, I think I’ll just do a delicate brain dump soon - just bring in my notes on the subject.

Then we can look at what we’d want to do with it.

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random notes on healthcare systems in Europe

Are healthcare systems designed, or do they just grow? Apparently, there have been moments in which people with some kind of mission do heavy movements - think UK’s National Health Service “from the cradle to the grave” redesign back in 1948 http://www.sciencemuseum.org.uk/broughttolife/techniques/nhs.aspx. But after that, just like after moving the family to a new home, it looks like things interact with the rest of our lives, pile up, deteriorate, or are at most minorly mantained or redesigned.

The result, in Europe (lots of adjacent countries), is that there’s a variety of national healthcare systems, each the result of their own national circumstances. They are very different (more or less money, more or less services, different ways to link payment with services, etc) and I’m sure we could learn from each other if we are to have meaningful conversations. A Swedish evaluation (I’m not linked to any of that, and my scientist trainers insisted that we should to try and look at the methods before believing in conclusions) looks at 35 such systems (http://www.healthpowerhouse.com/index.php?option=com_content&view=article&id=5&Itemid=2) and even dares to rank them (http://www.healthpowerhouse.com/files/Report-EHCI-2012.pdf). I haven’t read any of that in full, mind you: it’s just a window into the diversity of systems, probably with a view to answer the questions given by whoever paid for the evaluation, and not necessarily useful for us.

In any case, I’m personally interested in these systems’ failure modes. In Spain, we’re seeing how a system designed for a younger pyramid of people, mostly healthy and paying taxes, more or less worked for a number of decades, and seems to be rapidly deteriorating due to a number of factors:

  • Demography: more elderly people (I read somewhere that people over 65 years old spend a lot more than the younger ones, so an increase of 1% in the number of older people hits the common wallet disproportionately) and a smaller proportion of tax-payers (same effect).

  • Technology: more newer and more expensive medications and surgical procedures that are applied more often. This is a good thing (“hey, replace my hip so I can learn to play golf at 95 years old”), but it’s also more expensive. Also, it grows exponentially, while money grows linearly at best - or it used to, anyway. And that differential creates tension and pain: “sure I’m only going to have x-rays, and not that other fancy dynamic computarised image in full colour?”.

  • Management: healthcare systems are wicked. Two examples from a few years ago are: if you reduce waiting lists in surgery by having surgeons work also in the evenings, you increase waiting lists in the services in charge of post-surgery care, and the motivation; and if you pay them to work in the evening then they are less motivated (and more tired) to work in the morning. And management is part of that mess.

  • Economy: not just through demography, technology and management (factors which have been at work for a few decades now), but now as a result of the economic mess Europe is in right now. Those with their hands on the common purse’s strings use their best judgment to effect deep cuts - which are then hated by everybody else. As in “can’t you see that if we don’t prevent cancer we’ll have to cure cancer and that’s more expensive?”.

In short, at least in Spain, healthcare systems seem to be biting more than they can chew, changes are being pushed without much time for consultation (which would be messy at best), and it’s the weaker who pay for it more (too many examples). A clinician I know described the situation as one of disease in the healthcare system itself: it’s insufficient in the same way a heart can be insufficient, when it can pump blood forward, but less than is needed, so you get swallen legs (waiting lists), pain for lack of fresh blood (lack of resources), etc. If the aethiologic (causational) factors are still there, then the disease won’t go away, etc.

Even the World Health Organisation has been looking into it very recently. http://www.euro.who.int/en/what-we-do/event/oslo-conference-on-health-systems-and-the-economic-crisis Maybe they could use some help. #justsaying

Things could get magically better, but there could also be at least two basic failure scenarios: we muddle through with this economic/peak-everything crisis and we boil slowly and frog-like, or something faster (an economic crash, a war, a pandemic) gets in the way and we’re toast rapidly. Chronic vs Acute systemic failure. In an acute failure, we’d have to go all catastrophologic and think about reducing deaths (1), mostly the easily avoidable ones in the younger ones, using whatever it takes. With chronic failure, we can also include pain (2) and disability (3) - and look into wisely redesigning some subsystems for maximum effect. (The classic fourth priority, aesthetics (4) is either social pain/disability or luxury.)

What to do? What can we do as edgeryders. I’m completely lost here. The way Alberto puts it: “important problems, lots of opportunities, but little capacity”. But there are some ideas anyway:

  1. There’s the idea to create a wikipedia for health-care systems. Maybe one project would be to describe our different healthcare systems using some kind of grid?

  2. Some folks are working on “open data policy for health care”. We’d also need “open thinking on open data”.

  3. Maybe the kind of thinking outlined in our pandemic booklet can be deepened for chronic scenarios? Needs x Jurisdiction?

  4. Maybe we need to have better aims? What’s the worst pain that we should prioritise? Any good leverage point for systemic intervention?

Ok - this ends my “brain dump” at the moment. As I said, I’m as lost as anyone, and I feel I can’t even pose meaningful questions for us to answer. So, open space!

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A visualization maybe?

Lucas, this is truly great stuff. I like your view of “stuff piling up”, and I subscribe to it. I think this is the way public policy (and possibily most human activities works, practically all the time. Stuff breaks. You patch it up. Then patch the patches. At some point  the original purpose of the policy is buried under fifty layer of negotiations, crises and fixes.

But let me now focus on the first part of your comment. I think it lends itself to an elegant visualization. The algorithmic core is really simple, and could live on a spreadsheet: you need:

  • the existing age pyramid of, say, Spain
  • the existing birth rate and life expectancy.
  • data (or assumptions) on how much a person costs in health care in each age bracket.

Then, the visualization could compute the future age pryamid based on the exisitng one, birth rate and life expectancy; based on this, compute costs and show the relentless projected growth of health care costs into the future (and that’s with no changes in technology!). The next step would be to let the user vary birth rates and life expectancy (the first one represents social change, the second one represents progress in medical techniques); this would bring home how demography really drives health care costs and, therefore, its long-term sustainability.

What do you think? Is it doable? Has it been done already, maybe?

demographic simulation

You mean a spreadsheet like this old one, but with more details and real data?

https://docs.google.com/spreadsheet/ccc?key=0AhtJz9HHi6yVdHRtcnVYaDhEVl9xUDd6a1poeU5HckE&usp=sharing

It would help talk about the future, at least “fixing” some parameters, to create scenarios.

Just being able to talk about the present would be good as well. Pyramidalised data ftw! As in, this is who we are. I can imagine each bar of the population pyramid exploding into smaller segments: those who are diabetics, those who are knowledgeable about their diabetes, etc.

Actually, diabetes is one example of a frequent disease (specifically frequent in the Canaries, btw) with lots of implications: some of it can be prevented, it’s long term with acute episodes, needs money and molecules which can’t be made locally (insulin), lifestyle plays a big role, primary care and hospitals play a role, etc. (Has been used as an example for pandemics, too. The rich prepper who stocks up with food (and ammo!) for a year but runs out of insulin for his son, etc.)

That + money

That’s the idea. But your spreadsheet only looks at demography: we would need add cost parameters, and maybe simulate the equilibrium tax rate (the tax rate people have to pay to pay for health care) – as per your comment up here. I wonder if Marco Manca would help with this!

economy, ideas, experiments

The spreadsheet I wrote was just an old idea of how to simulate a self-propelled pyramid with just 3 generations of women (girls, moms, grannies). The one you suggest would have more details - which we’d have to grab from somewhere.

Now, this spreadsheet would serve as a starting point for conversations. What’s also needed is a way to grow, run and evaluate ideas. For example, there’s the notion that waiting lists are better handled in a centralised way (at the hospital, not by surgeons), and of course not all agree (a number of surgeons would like to set their own priorities). Could it be that it needs to be tested? Same with ideas for reducing not-clearly-needed surgery (getting the surgeon together with the general practitioner who possibly knows the patient better, and maybe a non-surgical specialty) would be costly but maybe it would reduce indications, paying for itself (but there would have to be a way to check that it’s not just a way to reduce costs, but also to increase good results). Maybe it would work, and maybe what’s needed is a framework for honest (= open) experimenting - if it doesn’t exist already.

I’m not an expert in any of this. But if this is indeed a complex-wicked system, then we’d need to work accordingly (I guess). And of course, if this is already being done, then it needs visibility, period!

hashtag?

A minor thing: what hashtag could we use for this kind of thinking?

My first thought was “Health At The Edge”, but the acronym is, well, hideous.

Maybe just #healthedge? It seems to be taken as a twitter handle.

#healthedgeeu, #healthER?

#EdgeOfHealth maybe?

Maybe #EdgeOfHealth ? Seems to be free.

The case for project hosting

I just browsed through the FluSCIM manual … well done, and indeed very well understandable! I can well imagine having a group for this on this platform … sounds like a great addition to the mix. Maybe you’ll not get so much feedback from us as we might be hesitant (at first) to talk about topics we don’t know much about. But it seems well worth a try.

Personally I use this platform for a kind of “project hosting” / “project incubation”, like the Github for social change and public policy. So for me it doesn’t matter if there’s not much input during the first time, as I need a place on the web for my projects anyway.

Out of interest, there seems to be no means apart from vaccination that can limit the total number of cases and fatalities (directly from the flu), when counting a flu pandemic and its subsequent seasonal occurences in total?

two issues & topics we don’t know much about & limit total cases

Two issues here: general healthcare systems, and the possibility of a severe pandemic. I linked to “severe pandemics” because it has been my work in the past years, and because it gives me (or whoever feels inclined to read the 6-page summary, plus some specifics inside the bigger document) a view of what a specific case of “extreme health” might look like. But maybe (maybe) the focus here should (could) be “healthcare systems”, as they are what works and hurts today.

I think none of us gets the whole picture in health systems. I’m just starting an open exploration, and maybe it will take us no-where - can’t know without trying.

Specifically about a severe pandemic, two extreme cities in the US had a large difference in number of cases: one had quite an explosion and many cases, the other managed to slow it down and also had fewer cases. In any case, just slowing the curve down means there are more available beds at any point in time.

A group sounds good.

“So, should I wait until I have sorted out some kind of a strategy, or at least a handful of ideas to then select from? Should I create an admittedly vague group here in EdgeRyders, laying out (in pencil) whatever views I may have right now, just to start a conversation about views and possibilities? I guess it’s the second, but if not then I’m happy to go with the first, letting it mature a bit more. As the saying goes: “no hurry, it’s only the end of the world”.”

I’d be really into a ‘health’ group and digging in: it’d be nice to have a dedicated space to keep all theads together & see who is interested. A vote here for figuring it out as you go along and seeing how it develops.

Musing about a health group + #LOTE3 session

The health topic is so big I can’t chew it. I am willing to learn, but starting it myself seems overambitious. I would welcome a ER project on health, and I promise to participate actively, but it would be down to [LucasG], [hec] and hopefully other edgeryders who are more in the know than I to lead the discussion (and eventually come up with the core idea for the project).

Is it realistic to do a session on health at #LOTE3? Is anyone up for leading it?

health does not equal not being ill

I don’t have much knowledge about national health-care systems. I lived in Israel and for many years paid a lot for mandatory health-insurance I didn’t believe in and did not need. Currently I live in Romania without any systemic health-insurance.

It seems to me that debates about health-care are dominated by a common western model of “treating illness”. I believe there is much more to health. Health-care today seem to begin when health is already absent.

I believe health is rooted in everyday life: diet, lifetyle, relationships, etc. It is in my mind about personal choices and responsibility for the consequences of those choices … and when that responsibility is neglected health deteriorates and health-care escalates and gravitates towards the domain of “health care systems” where others are expected to “provide health”.

I can contribute to this subject from (1) this personal-responsibility persective and (2) from Yoga teachings that offer an alternative view of what we are and what this says about health.

Nothing in my upbringing/education was addressed at being healthy … health was supposed to be an obvious side-effect to living - and when it wasn’t doctors were there to “fix it”. My consciousness of health came from my Yoga teachers and teachings … nowhere else. I don’t know if this is the same in other countries/cultures or if things have evolved since then … and if today better education/knowledge is available young people.

Living in rural Romania (relatively poor population) offers another perspective … poor health: poor teeth, obesity (even though people are very physically active and have access to quality food), heavy smoking & drinking … blunt context.

I don’t know if any of that helps …