Health Services 2.0

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Discussion

Proposed model by Charles Leadbeater

and Hilary Cottam [1]:

"The closed, professionalised system is too centralised, cumbersome and closed to cope with the epidemic of chronic conditions which mainly stem from people's lifestyles. The front line of health care is not in hospitals nor even general practice waiting rooms, but in people's living rooms and kitchens, pubs and clubs, supermarkets and restaurants, gyms and parks. By the time someone realises they have a chronic condition that warrants a visit to the doctor it is too late. We need a health system which catches conditions early, even better prevents them altogether and allows people to take action without having to wait to see a doctor. Such a health system would have as its prime aim enabling people to stay healthy and well. That in turn would mean patients and users becoming participants in and producers of their own health: user generated health care. The best way to imagine what such a system would look like is to think of a health system organised primarily around people, their families, homes and communities, supported by hospitals and doctors, rather than a system which is dominated by high fixed cost hospitals.

A user generated health care system would have to be highly distributed. Knowledge and resources could not be centralised in specialist hospitals or even surgeries. People want health care close to home. Public investment should not be going into more big hospitals, but creating a home-based health care capacity, that is more flexible, personalised and lower cost. The challenge of chronic disease is to enable to change their lifestyles. That cannot be done through a consultation with a doctor. It has to happen in situ, as people shop, eat, walk and work. People need help, advice, support and tools close to hand, without having to visit a doctor for reassurance and advice. We need to shift towards much greater self-assessment and diagnosis. New generations of intelligent sensors and monitors will allow many of the tests that GPs do to be done at home. The average diabetic sees a doctor or nurses perhaps six hours a year for a check up, but spends 8,000 hours self-managing their condition. The big gains will come from improving what happens in the 8,000 hours of self-management. The distributed resources of the new health system would include an expanded role for pharmacies, which conduct 600m consultations, twice as many as GPs.

Solutions would have to be co-created between people and professionals. Giving people a sense of control should be one of the central goals of a user generated health system. If someone spent nine months with the support of a life coach to prevent the onset of diabetes, the cost would be less than 15 years dependence on insulin injections and regular consultations with doctors, which is invariably the result of late diagnosis. Co-created solutions emerge from interaction and conversation not from a professional delivering a solution to a passive and dependent patient. The central aim should be to equip people with tools, knowledge and motivation to better look after themselves and one another.

People would need to help one another peer-to-peer as the families on In Control in Wigan found. As consumers their main relationship was with their service providers. As participants they started to look sideways to one another for help and support. Medical professionals do not have all the solutions, even to purely medical issues. They are not the best people to turn to for advice about the social, personal and emotional aspects of health. The best source of support for those issues will not be doctors but other people who have lived with the condition themselves. A participative system would see patients and their carers as part of the distributed knowledge base. We need to create new platforms and spaces - both social and digital - to allow people to share and collaborate. Imagine an open source approach to building up knowledge about diabetes management, in which people can find different modules relevant to their particular position, lifestage and needs, or an eBay system for trading help and equipment or a way of learning about health through a computer game like the Sims.

All of this would require new organisational models and professional roles. Chronic conditions arise from our subtlety different lifestyles. A centralised organisation that relies on a cadre of specialised, knowledgeable professionals, is too cumbersome to deal with such complexity. It cannot hope to gather all the information it needs to work out what needs to be done in highly dispersed and different settings. Far more needs to be done by self-help groups and online forums. Dipex.org, for example, is a site where people with different conditions can post their own narrative accounts for others to learn from. More and more people are turning to the Internet, chat rooms and discussion groups for help, support and information on health.

We will only reduce the toll of chronic disease if we encourage far more, distributed participative solutions that also encourage people to help one another. Participation will only flourish if it also breeds collaboration. We will only create better public health by influencing many, many private healths. Fifty years ago daily life - getting to and from work and the shops - involved the equivalent of walking a marathon a week. In 1952 the British cycled 23bn miles a year, compared to 4bn now. Only 20% of men and 10% of women work in physically demanding occupations. Activity has been designed out of our routines. A quarter of the English population is officially judged to be obese. Lack of adequate physical activity is closely connected to chronic conditions. A national network of peer-to-peer personal trainers and health clubs - Active Mobs - might be one of the best long term health investments we could make.

We will not deal with the health challenges of the 21st century - ageing and chronic disease - with a professional service, hospital health system designed for the contagious diseases of the 19th century, which leaves people dependent upon doctors for solutions they usually cannot deliver because it is too late to do much. People need to become participants in and producers of their own health rather than passive patients. A healthy society is not what doctors deliver to us, but what we produce together. Social innovation by the masses not just for the masses is what we need. Motivation is the new medicine. Public services will more effective the more they to motivate, support and educate people towards more effective self-help: the user generated state." (http://www.charlesleadbeater.net/archive/public-services-20.aspx)

The critique of professionalism by Ivan Illich

Summary by Charles Leadbeater and Hilary Cottam [2]:

"The medical establishment has become a major threat to health. The disabling impact of professional control over medicine has reached the proportions of an epidemic. Neither the proportions of doctors in a population, nor the clinical tools at their disposal, nor the number of hospital beds is a causal factor in the striking changes in overall patterns of disease in developed societies.

Professionals have an inbuilt tendency, despite the best intentions of many individuals, to become cartels, a kind of priesthood. They are not just gatekeepers of knowledge, resources and status. They determine what is valid, legitimate, needed or deviant. They tell us where we are deficient in our learning, health or behaviour, and what we need to do to correct our shortcomings. The public service professions may have started life with a vocation to serve, by providing specialist expertise but they have now exert a self-justifying monopoly over many areas of life. Education has become what teachers deliver in school. Doctors and hospitals define what it is to be healthy. Care is what social and care workers organise for us. Professions may serve us but at the price of ensnaring us in their language, protocols and codes and in the process they disable us, by rendering us confused and dependent. A person going into hospital quickly becomes redefined as a condition to be diagnosed and treated. A child going to school quickly becomes defined by their progress against bewildering key stages which set out what they should be learning by when.

Our debates about public goods - what it means to be healthy, educated, cared for - quickly degrade into debates about professions and their institutions: how they should be funded, who should get access to them, how they should be managed and held to account.

By definition what is not professional, institutionalised and properly accredited - the self-taught, the self-administered - must become odd-ball and maverick, drop outs and deviants, not to be trusted. As professionals extend their dominion over our lives our confidence in our abilities to make decisions and provide solutions for ourselves diminishes. We become incapable of acting without prior professional approval. When we do not get the service we have come to expect, when doctors are not available, or cannot dispense the miracle cure, we become angry and resentful. Professionals even control what tools we get to help ourselves - over the counter medicines for example - and how we use them.

That is a brief sketch of ideas articulated 30 years ago Ivan Illich, a nomadic and iconoclastic Catholic priest and arch critique of industrial society. Illich set out his ideas in a series of short, polemical and passionate books - more like pamphlets - in which he set about the failings of modern institutions and the professionals who organise them: Deschooling Society, Limits to Medicine, Disabling Professions and Tools for Conviviality." (http://www.charlesleadbeater.net/archive/public-services-20.aspx)