Could we help redesign health-prevention and health-care in times of crisis?

Knowledge Collection Practical Resilience
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All Europeans are directly or indirectly supported by public health services. Whether it’s access to hospitals after an accident or for baby delivery, or suppression of diseases like malaria and TB in wider society, or the constant campaign against HIV, we live in healthy, safe cultures because of a constant effort spearheaded by the State. In Greece, the public health system has come under enormous financial pressure due to cuts, and increasing demand as stress, hopelessness and unemployment all take their toll on the citizens. Similar stories are starting to pop up in other places.

In this session, we’ll be examining resilience in health care and public services in general.

Resilience is about surviving bad situations: our car breaks, and we decide to walk or phone.

Our health-system can be compared to a heart that’s not strong enough relative to the required volume of fluid. We get long waiting lists, real needs are not served, and there’s suffering at all levels. This “health-system insufficiency”, even if we look at things in economic terms only, often means we end up with more expensive diseases!

So what do we do?

 

Some of us have experience in “planning for resilience” in specific situations, say for a bad flu pandemic, but every situation is different, and this time it’s not like nurses and doctors and ambulance drivers are all ill at home at the same time. Some “high-level” thoughts are written here, but it’s all kind of vague and useless unless we look into the details and get real.

Will you help us get creative about improving health prevention and care, so that what’s most important gets done as well as possible given the circumstances?

At the Resilience Session we intend to look at how these systems work, how they fail and what the options are. We invite your input now, and your participation on June 15th and a bit later.

  • What has been your [*] experience with the health systems (prevention and care)?
  • What didn’t work so well and how did you find the way around the problem?
  • What does that suggest about how to improve the resilience of society in this area?

[*] You can tell us about the experience of others around you, but this subject may be sensitive and we should respect people’s privacy. So, instead of “my sister”, maybe we could write about “a 23-year-old woman I know”.

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Modify vision of medecine and the resilience solution emerges

Ask Involute Conduit what he thinks about health care systems. He would have a thing or two interesting things to say about resilience.

I spent 4 years of my life thinking about pandemic preparedness. I connected with many ‘Flubies’ from around the world. One of my best friends, that I really enjoyed talking with, is Rear Admiral W. Craig Vanderwagen, USPHS - retired, now a senior partner with Martin-Blanck and Associates. He was the first Assistant Secretary for Preparedness & Response under the redesignation of the Office of Public Health Emergency Preparedness. Vanderwagen served as the Secretary’s principal advisor on matters related to bioterrorism and other public health emergencies. He also coordinated interagency activities between HHS, other federal departments, agencies, offices and state and local officials responsible for emergency preparedness and the protection of the civilian population.

Vanderwagen used to blog on Facebook. He would post notes and I used to discuss with him, and other Facebook friends, about pandemic related issues.

In september 2010, I wrote my first blog post about open government (Le plus intéressant dans le phénomène Web 2.0). Vanderwagen saw it and he encouraged me to explore more in this direction, and he confirmed me that he was himself also having very similar thoughts.

I, myself, have been having an experience of PREVENTION with the health systems.

I discovered that the human body is capable of self-healing. It is a very simple process, it does not cost anything, everyone has access to it, everyone can learn about how to do it.

If governments were aware that there is no need to focus on a localized part of the body, but an overall approach is what allows to self-heal, this would lead to a considerable reduction of health systems costs.

This solution, howerver, is not good for the wallets of the pharmaceutical industry. This industry is even trying to make a happiness pill by studying happy hormones. Have you ever heard of more nonsense? It would be so much simpler to find how to secrete happy hormones in the body, that sell happy hormones, don’t you think?

We are observing a rise of case of burnouts, depression, depression in children, railway suicide, mental disorders of all sorts, dementia, immolation. It would not cost that much money to consider this option, the hypothesis that there is an self-healing power available for each citizen.

If we did followed this option, it would lead us to a paradigm shift.

This approach in medecine, it is not so different from the social media turn we are all experiencing. With the rise of social media, the way we communicate changed, and we realized that we are all connected with material links. We switched from speaking to one or two people, to speaking to dozens of people simultaneously. We are gradually moving towards unity (or oneness).

Step 1: Apply this — the connections we have with the rest of the world — apply this phenomena to the human body. When the bladder has a problem, the focus should not go on just the bladder anymore, but on the whole psycho-physio organism (and beyond). When this is understood, then it becomes possible to move to the next step.

Step 2: Where does the power for self-healing come from??? The answer is happiness.

Step 3; What is happiness??? Ha! United Kingdom scored -44 on the scale of happiness. Do you seriously think that the majority of people in westernized countries know how to answer this question? However, there are people who would have a thing or two to say about happiness. There is a physical explanation for happiness. Happiness can become a physical perrennial state. Those in this perennial physical state have the power to self-healing and they very rarely need to use the health systems. They almost never catch a cold. When they fall on the ice or hurt themselves, it self-repairs overnight. Their system gets purified and every damaged cell, in the whole body, is replaced and healed.

Are we ready to listen to such stories and consider that we each can learn to self-heal???

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Approaches … to stories and ideas.

If tic-tac-toe (noughts and crosses) is simple because a child can master it, chess is complicated because a silicon brain can play with some depth, and human pairs are complex because what one hints at doing affects what the other might consider responding to, then health systems have been described as wicked (super-complex). As with all gordian knots, and particularly in a crisis, my feeling is we need to rapidly cut through the chase.

At the resilience session I hope we’ll be looking at what can be done in practice. Light conceptual frameworks can help, as can direct ideas (and creative provocations!) from which to build upon. I’m also a big fan of doing the maths, at least with broad figures: do many people die from this? How many would have their death delayed by this intervention? How many years are gained? (As an example of the last point, in a bad pandemic most grandparents would gladly have their grandchildren vaccinated first.)

Here are two conceptual frameworks (and there could be more, but let’s go for the ideas, because people are already sick and dying):

1) We could - as I believe Lyne is doing - try and work at the level of “beliefs, attitudes and values”. I have no experience in that except when I’ve watched friends and family members who free themselves from smoking, start doing exercise, etc. It’s hard but in many cases doable. And it’s true our societies are themselves addicted to taxes from tobacco etc, so the public-money battle-on-addictions has had a history of being fought only half-heartedly. In any case, what to me is the final point, “behaviours”, is hard to change, and we all know it from looking at others and ourselves. A few people enjoy “instant illumination”, like when someone has a minor heart attack and decides to quit smoking right there and then, but that’s pretty, well, expensive, and doesn’t scale well. Facilitating behavioural changes in populations has had, let’s say, mixed success.

So, in practice, we could look into what else we could do that hasn’t been tried, or that has been tried but not widely applied! What experiences do you know of, and what would you suggest?

2) We can work with all that what we have, and in that means looking beyond what’s usually conceptualised as “the health system”. A doctor I deeply respect once told me he was fed up of the usual pyramid view: general practitioners at the bottom, then specialists, then hospital administrators, and so on until you reach the director of the World Health Organisation, who is alone at the top. In this view, “patients” are, as the name implies, the inert sand at the bottom of the pyramid. He favoured a completely different view, based on the history of diseases and people: at the very beginning, there was this child who fell off a tree, and his mum came to take care of him. That’s at the heart of an onion in which hospital administrators are there to help, and so are politicians etc - they are all layers.

So, not a pyramid but an onion. In fact, it’s more like a network of onions. The European young - EdgeRyders experts - know about networks. Alberto’s personal story (and we could have more of those, please!) speaks of a particular onion. So, how do we use this way of looking at health systems?

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Networks (as usual)

I suggest an organizational approach, Lucas. The idea is to decentralize everything you can, not to individuals but to groups, linked in networks. You could have a “flu citizen expert” in  a village with minimal training. She could diagnose easy cases of flu - even better, validate people’s self-diagnosis “Phew, I think I’m catching the flu”. She could be connected to other people like her elsewhere, who she could turn to for expert advice. Somewhere in the system there is a highly trained flu super-specialist, who acts as a support service to the whole system. So, no pyramid: it’s more like a very flat network configuration with a few support people you can call in as needed.

Neural networks are quite good at diagnosis, I seem to recall. So you don’t necessarily need smart people to diagnose - you just need ordinary people linked in the right way!

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networks

With flu it soon became clear how, in a severe pandemic, both primary care and hospitals would simply “collapse”, whatever that means.

Similar ideas were suggested for other diseases. Diabetes is a long lasting disease, so patients end up learning a about their own situation, and some learn it so well that they become experts and learn to help others. Not just the practicalities of diets, but also how to appropriately explain the disease to your peer newbies.

I don’t know if this has been tried for arthritis etc.

How to facilitate that is another step in the process. I guess that takes some other kind of meta-network, which we (“we”, hah!) need to look into. Hmm. Alberto?

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Peer-to-peer health

At some point I applied for a job in England, as the director of a project called “People.powered health”. The idea was to figure out ways to empower communities to co-design and co-deliver their own health care  - and the real idea, of course, was to save some tax £ in the process. They did not hire me: someone else showed up with better qualifications. But I think the road is clear. And you are right, it is a meta-network with some resources to empower some local talent to spin the local network. That part is not rocket science for me anymore.

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Resilience and resistance

To answer the questions

  • What has been your [*] experience with the health systems (prevention and care)?

Things I can think of: Ushered into this world without problems, and without problems for my mum - sadly it was not entirely the same for her, her mother (my grandmother) died in childbirth with what would have been her brother (that was over 60 years ago…). I was vacinated for various things (occasionally after a pause for partents to consider this), with only one scar to show for it as far as I know. One broken thumb fixed (utility cycling accident), one broken wrist fixed (silly skateramp bike accident) - both a few years ago now, but my memories of the fixing up are only good. Even though in the latter case the break, and associated hospital visit, was hundreds of miles away from my home town (a national service is important! ). I’ve also had support with depression and anxiety, a less positive experience involving longer waiting times, but ultimately this was pretty good as well - and was really important to me at the time that it was free at the point of need. Some prescription charges through the years, which is not so great, but they were affordable for me at the time (and they don’t apply to those on certain benefits in the UK). Blood tests and some B12 injections to make sure my vitamin and mineral balance was coping with veganism, I’m really grateful for that. I have a very supportive, friendly GP, who has allayed my fears when I have gone to check things I was worried about checked out - I wouldn’t hesistate to make an appointment if I was worried about somthing - I wouldn’t (at the moment!) have to worry about whether or not I could afford the appointment or any treatment.

Other experiences: my sister had a squint sorted out. A friend had a major operation which saved her life but left her paralysed, years of physio, and another operation which sadly couldn’t save her life again.

  • What didn’t work so well and how did you find the way around the problem?

I can’t really think of anything. I’m lucky to have services nearby - in the past transport to GP/Hospital has been an issue as I don’t drive.

  • What does that suggest about how to improve the resilience of society in this area?
Not a lot, really... Save to prioritise health ("there is no wealth but life") over the imaginary 'wealth' of the financial system. Public health systems are struggling under cuts, but what's that - banks are still getting bailed out to the tune of billions?

Maybe what we need to think about when we think about health is not only Resilience but Resistance to the global attacks on publicly owned healthcare systems, and to the monopolies of the Pharmaceutical industry. We certainly need to avoid feeding into the propaganda that publicly owned health systems are inefficient or ineffective. I actually think these systems are more resilient than we might think at first too - are doctors and nurses going to stop having a caring impulse because the system of financial transactions is creaking? Are they going to begin to deny their expertise to people? I think I would argue that the bigger threat to public health is less a financial crisis and rather more the priorities of the current financial system!

I’m slightly concerned by phrases like:

“get creative about improving health prevention and care, so that what’s most important gets done as well as possible given the circumstances?”

and

“The idea was to figure out ways to empower communities to co-design and co-deliver their own health care  - and the real idea, of course, was to save some tax £ in the process”

Having been involved in a long campaign against a so-called ‘social enterprise’ that threatened to fragment our local health services - removing them from the National Health Service and the associated public accountability, exemption from VAT, national economies of scale and bargaining power etc etc, makes me VERY cautious about being “creative” with ownership models (see here for video footage of me explaining the campaign, and issues in the UK health sector at present: http://keepglosnhspublic.posterous.com/public-meeting-thursday-15th-march-2012 and the root link http://keepglosnhspublic.posterous.com for lots of information on the campaign).

I am very aware of the need to consider the challenge of peak oil to healthcare (and I’ll admit that financial collapse poses risks as well). I’m less convinced that demography is a problem - this seems to be the argument of those who will cut pensions as they increase spending on wars.

If not particularly keen on upping taxes on health ‘bads’ as a solution either. I’m not a smoker, and hated coming home from my barman job stinking of smoke, but in the UK, high taxes and bans on smoking has not stopped everyone smoking - they have just stigmatised people, helped break centres of community (pubs, which are closing very quickly), and raised a lot of money for the government from people who are addicted to something (and hence unable to make a free choice). Not a great solution as far as I’m concerned.

I’m personally particularly interested in the public health issues around weight - and the possible positive work that policies on food and transport could do to improve diets and increase exercise. Not taxes or financial inducements, but the redesign of cities to reduce car ownership and use and increase walking and cycling, and education in, and shared public spaces given over to, cooking and growing food.

All for now, look forward to discussing this in person!

1 Like
8

Resilience and resistance

To answer the questions

  • What has been your [*] experience with the health systems (prevention and care)?

Things I can think of: Ushered into this world without problems, and without problems for my mum - sadly it was not entirely the same for her, her mother (my grandmother) died in childbirth with what would have been her brother (that was over 60 years ago…). I was vacinated for various things (occasionally after a pause for partents to consider this), with only one scar to show for it as far as I know. One broken thumb fixed (utility cycling accident), one broken wrist fixed (silly skateramp bike accident) - both a few years ago now, but my memories of the fixing up are only good. Even though in the latter case the break, and associated hospital visit, was hundreds of miles away from my home town (a national service is important! ). I’ve also had support with depression and anxiety, a less positive experience involving longer waiting times, but ultimately this was pretty good as well - and was really important to me at the time that it was free at the point of need. Some prescription charges through the years, which is not so great, but they were affordable for me at the time (and they don’t apply to those on certain benefits in the UK). Blood tests and some B12 injections to make sure my vitamin and mineral balance was coping with veganism, I’m really grateful for that. I have a very supportive, friendly GP, who has allayed my fears when I have gone to check things I was worried about checked out - I wouldn’t hesistate to make an appointment if I was worried about somthing - I wouldn’t (at the moment!) have to worry about whether or not I could afford the appointment or any treatment.

Other experiences: my sister had a squint sorted out. A friend had a major operation which saved her life but left her paralysed, years of physio, and another operation which sadly couldn’t save her life again.

  • What didn’t work so well and how did you find the way around the problem?

I can’t really think of anything. I’m lucky to have services nearby - in the past transport to GP/Hospital has been an issue as I don’t drive.

  • What does that suggest about how to improve the resilience of society in this area?
Not a lot, really... Save to prioritise health ("there is no wealth but life") over the imaginary 'wealth' of the financial system. Public health systems are struggling under cuts, but what's that - banks are still getting bailed out to the tune of billions?

Maybe what we need to think about when we think about health is not only Resilience but Resistance to the global attacks on publicly owned healthcare systems, and to the monopolies of the Pharmaceutical industry. We certainly need to avoid feeding into the propaganda that publicly owned health systems are inefficient or ineffective. I actually think these systems are more resilient than we might think at first too - are doctors and nurses going to stop having a caring impulse because the system of financial transactions is creaking? Are they going to begin to deny their expertise to people? I think I would argue that the bigger threat to public health is less a financial crisis and rather more the priorities of the current financial system!

I’m slightly concerned by phrases like:

“get creative about improving health prevention and care, so that what’s most important gets done as well as possible given the circumstances?”

and

“The idea was to figure out ways to empower communities to co-design and co-deliver their own health care  - and the real idea, of course, was to save some tax £ in the process”

Having been involved in a long campaign against a so-called ‘social enterprise’ that threatened to fragment our local health services - removing them from the National Health Service and the associated public accountability, exemption from VAT, national economies of scale and bargaining power etc etc, makes me VERY cautious about being “creative” with ownership models (see here for video footage of me explaining the campaign, and issues in the UK health sector at present: http://keepglosnhspublic.posterous.com/public-meeting-thursday-15th-march-2012 and the root link http://keepglosnhspublic.posterous.com for lots of information on the campaign).

I am very aware of the need to consider the challenge of peak oil to healthcare (and I’ll admit that financial collapse poses risks as well). I’m less convinced that demography is a problem - this seems to be the argument of those who will cut pensions as they increase spending on wars.

If not particularly keen on upping taxes on health ‘bads’ as a solution either. I’m not a smoker, and hated coming home from my barman job stinking of smoke, but in the UK, high taxes and bans on smoking has not stopped everyone smoking - they have just stigmatised people, helped break centres of community (pubs, which are closing very quickly), and raised a lot of money for the government from people who are addicted to something (and hence unable to make a free choice). Not a great solution as far as I’m concerned.

I’m personally particularly interested in the public health issues around weight - and the possible positive work that policies on food and transport could do to improve diets and increase exercise. Not taxes or financial inducements, but the redesign of cities to reduce car ownership and use and increase walking and cycling, and education in, and shared public spaces given over to, cooking and growing food.

All for now, look forward to discussing this in person!

9

Regarding smoking, is there an harmonization throughout Europe of laws prohibiting smoking in public places, public transport, offices, restaurants and private vehicles? To my knowledge, there are only a few countries (United Kingdom and Belgium) which extended the ban on smoking in all these places. Therefore, it is not solely the fault of smokers, if they fail to get rid of their bad habits. Prohibiting laws on smoking are perhaps not completely all at the rendezvous. In restaurants and offices, what is the distance prohibited from the door? I did not notice there is any distance in France. I saw a many smokers agglutinated front of restaurants and office doors.  Streets are so narrow in European cities that if there was a law prohibiting smoking, from let’s say, from 3 meters from any restaurant or offices, there would be no more smoking allowed, except standing in the middle of the street.

I do not smoke, so I can not see what’s printed on cigarette packages. What percentage of space on each package is dedicated to a prevention message?  20%? 30%? In shops, are cigarette packages in full view of everyone? Is there a law requiring cigarettes to be hidden under the counter or in an opaque cabinet? Are smokers receiving free prescriptions of “patches” medication? Is there follow-up programs for smokers?

Quadruple, fivefold, sixfold taxes on the price of packs of cigarettes, increase police squads who monitor cigarette and drug smuggling, and you will probably see considerable reductions in smoking rates.

10

Ban smoking? Ban cars first…

I’m only partly saying that tongue in cheek: http://grist.org/news/diesel-exhaust-causes-cancer-who-says/

"In a report released yesterday, the World Health Organization (WHO) declared exhaust from diesel engines to be a carcinogen [PDF] — the same status as secondhand smoke. In 1989, the fumes were deemed a “probable carcinogen.” The suspected culprit? Particulate matter expelled during diesel fuel combustion. Gasoline exhaust, with a different chemical makeup, remains a possible carcinogen.

As reported by CBS News, the WHO study looked at a population of 12,000 miners over the course of the past 60 years. Those regularly exposed to diesel exhaust had three times the rate of lung cancer deaths as their peers."

Well, if not cars, then at least mining… (cars do have other negative health effects however - deaths and severe injury from collisions, effects on physical exercise, reducing that of drivers and those who stop walking and cycling because their streets have turned into busy roads, and their communities criss-crossed with motorways…). For more read this excellent book by Ian Roberts and Phil Edwards:

The Energy Glut - The Politics of Fatness in an Overheating World. Summary youtube video here.

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Artificial scarcity on simple diagnosis/treatment?

46 years into my life, I have enjoyed relatively good health. No major ilnesses, no important injuries, skeleton still intect. So - luckily - I have not had a lot of experience on the health care system.

That leaves me with three needs:

  • prevention. I suspect this is has been critical in keeping me going: not smoking, drinking very moderately, watching my weight, not doing drugs, not doing junk food, exercising regularly. I have my own ideas as to how you could motivate people to do that. Is this off topic or do we talk about it?
  • vaccination. Done that - and never caught TBC. 
  • diagnosis and treatment of minor diseases like flu (sorry, Lucas - I know it can be a killer). My immune system seems to work quite well: flu for me is generally not more than a couple of days of feeling tired and in a bad mood. Each three or four years I get fever and treat it with aspirin and the like. A few times in my life I had to resort to antibiotics, especially as a child.
The good news is that all if this stuff can be quite resilient, because it does not require large facilities and doctors with ten years of training. It does require cheap pharmaceuticals. So perhaps a resilient system would involve a knowledge base around the basic stuff like flu that can be transferred to a few people in each community with some very basic training; and no-patent cheap drugs (painkillers, antibiotics etc.) or, even better, a knowledge base to make your own from raw materials readily available in nature. Everything that looks non-standard is passed on to some real-deal doctor, but screening out the basic stuff would, I suspect, reduce a lot the load on the health care system. Does this make sense?

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Practical ideas emerging from this story … and we need help!

“Watching your weight” reminds me of something that was tried in the UK and elsewhere. It’s about using networks and fake currencies to improve the health of the people in a certain neighbourhood.

Notice I speak of “neighbourhood” and I don’t assume “community”. Work with what we have!

Anyway, what these people did was to suggest that people who were, let’s say, “unhealthily fat” (as diagnosed cooperatively by the persons themselves and the doctor or nurse or whatever), would make a group and use some kind of “time currency” and “karma points”, meet every now and then, set their own goals, and help each other. For example, in a group they might want to lose 100 kg (that’s for the whole group, and I suspect they also wanted to somehow minimise variability) and work on that cooperatively. Those who were good at cooking would teach the others how to cook healthier. Others would call on their street neighbours to go for a walk together.

So that’s prevention at the neighbourhood level, with community building built in.

I have no idea on how policy would emerge from that, but then I guess we all have our domains of expertise, right? :wink:

13

Autonomy through overall action programs (not solely on disease)

In terms of prevention, some clinics and groups are doing interesting work with patients suffering from heart disease. They do not just provide information about diet, but try to teach them how to live better, change their lifestyles so that they can handle stress and learn to take things less dramatically, ease out on their anger, etc. They educate about making new choices, taking care of the environment, paying attention to relationships, participate and get engaged in their community, learn how to sleep well, learn how to have fun in live, reaching for their dreams, etc. This community, Proactivite, it promotes action programs focused on the welfare of the patient and not solely on the disease that he/she was diagnosed with. Their efforts are focused on the person, his/her overall health, the needs and those of his/her family for the appropriation of autonomy through discussion, experience sharing and peer-to-peer support. They strive to produce a commitment to help a human being in a concrete way to meet the challenges of his/her health.

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Health care circles tend to be very compartimented

Your idea makes sense.

A knowledge base to make your own from raw materials readily available in nature: lovely idea! It fits in well with a strategy emphasising food production and communities of farmers / garderners / citizens, etc…

Going back to the remedies of grandmothers and gardens of grandfathers, can this period of transition also be seen as an opportunity to discuss why the current health system does not work so well?

The medical circles, they tend to be very compartimented. Nurses are not allowed to take initiatives, most responsibilities are on the doctors’ shoulders. In some countries, there is a very long waiting period of time in emergency rooms, but health care workers wait till the doctors arrives before they can do anything.

When I contacted the government of Quebec with my opengov collaborative project with the Flubies community (for pandemic preparedness), I was greatly laughed at, and they asked me with contempt, ‘You are who?’. Who do you think you are? you’re not even a doctor or a health specialist. A ‘normal’ citizen could have trouble being seen as a possible expert or having any expertise at all, by people in the health care circles.