Caroline Tomlinson disabled teenage son Joe had a problem. He wanted to go to school with all the other teenagers in Wigan, on the bus. But when Caroline approached the social services department to see whether that would be possible they pointed out they already had a block contract with a local taxi firm to transport Joe to school and sending him on the bus would be an additional cost they were unprepared to pay, especially as in the department's assessment Joe would need to be accompanied by two care workers to make sure he came to no harm.
A few months later however Caroline and Joe enrolled on an initiative called In Control run by a social enterprise for the Department of Health which helps young people with learning disabilities take control of their own care. Everyone going on In Control gets their own annual budget - the cash equivalent of what they would have got in services - and help to decide how to spend it on the kind of support they need. Caroline and Joe quickly drew up a plan to get to school on the bus, with the help of two fellow sixth formers who were studying for care qualifications. Joe was happy. He and Caroline were managing the risk rather than the department, so the social workers were content. And as Caroline puts it : "You give me ten pounds and I will make sure it goes much further for Joe than any local authority."
Joe and Caroline Tomlinson, and the other families enlisted by Wigan council onto the project found their relationship with public services was transformed. Where once they were dissatisfied, complaining consumers, in an adversarial relationship with service providers and professionals, they found themselves turned into participants and co-investors in finding better outcomes for themselves. They sought and paid for professional advice and support, but within the context of their own plans. In the past, all too frequently, it had felt the other way around: Joe and Caroline fitted into plans and strategies drawn up by the professionals, trying to bend their lives to fit within the provision the council made available.
It is often assumed that the public have to rely on professionals to deliver public services because in the economic jargon there is an information asymmetry: the doctor or teacher knows more than the patient or pupil. Yet the families of these children have fine grained knowledge about what they really need: when they need two carers to support them and when only one will do; what risks to take on a trip out to the zoo and so on. The In Control initiative draws out this latent, tacit knowledge of users that is largely kept dormant and suppressed by the traditional delivery approach to services in which professionals are largely in control, assumed to have all the knowledge and so consumers are largely passive because they are assumed to lack the capability of taking charge of their own care, health, learning or tax.
Caroline Tomlinson summed up the benefits of In Control, this way: "You get longer term funding. Its not week-by-week so you can genuinely plan for how you will use the money. It gives you something to build around - for example planning a trip out that you might save up for - rather than just managing the service, getting by. It gives you much greater flexibility to commission the mix of services you need, when you need them. For example my son wants a social life, he wants to be able to go out, without his family, like other 17-year olds. So on those occasions he wants to be accompanied by a 17-year old. That's not something that would be possible under social service rules."
Making In Control work is not simple however. Turning service users into commissioners and designers of service solutions is tricky as Caroline explained: "You need help to start planning and designing what you need. I was not used to seeing opportunities and possibilities. I just thought in terms of getting by. You get used to accepting your lot, what you get given. You need planning tools to help you visualise and shape the services you want and that needs to be a continual process, which you adjust. You have to go step by step, building up your confidence to take risks and do things a little differently. It is not easy being on In Control, it's like running a small business, constantly juggling people and money and time. But it's a darn sight better than having to fit into a larger system."
The benefits of In Control do not just come from giving Caroline and her son an individualised budget to spend as they see fit. That brings additional benefits: it mobilises their ideas and know-how to make the money go as far as possible. When they were service-users they had no incentive to innovate. Now they have lots of incentives to add their innovations because they stand to benefit and through the community of families on the In Control programme those innovations are likely to spread.
As In Control shows services that enlist users as participants are more likely to unlock user-led innovation. Lead users tend to have more extreme and intensely felt needs which put them at the leading edge of change in a field. Lead users often have greater knowledge, they use products more intensively and they have skills that allow them to adapt products. What they want now, other consumers will want in due course. Many technology and computer games companies are well versed in working with their most demanding and innovative lead users to work out ideas for future products and applications. Caroline Tomlinson is a lead user of public services. Her family's complex and intense needs highlight how more mainstream services, for example care of elderly people, long term conditions, learning programmes could be reformed.
In modern media, software, games and cultural industries, user generated content is all the rage, spawning social networking sites like My Space and Bebo, mass computer games like the War of Witchraft, volunteer created encyclopedia like Wikipedia and Citizendium, news services such as Oh My News in Korea which has 55,000 citizen journalists, trading systems such as Graigslist and eBay and the fast growing virtual world of Second Life. Most of these examples are built on a dynamic relationship between a company or core organisation that provides the kernel or platform and a large community of users who generate, shared, amend and distribute content. What would the public sector be like if it too mobilised mass user generated content for care, health, safety and education? For the past decade most of the debate about public service reform has focussed on delivery, making the public sector value chain work more efficiently, to resemble reliable private service delivery. But you cannot deliver complex public goods the way that Fed Ex delivers a parcel. They need to be co-created. That is why these emerging models of mass user generated content are so intriguing. They point the way to a user generated state. Or put it another way. Most of these emerging business models enlist users as participants and producers at least some of the time: they move from consuming content, watching and listening, to sharing, rating, ranking, amending, adding. A public sector which just treats people as consumers - even well treated ones - will miss this dimension of participation which is at the heart of the most successful organisational models emerging from the interactive, two-way Internet, known as Web 2.0. What would public services 2.0 look like?
In Control provides a glimpse of what public services 2.0 would look like: by turning people into participants in the design of services, they become innovators and investors, adding to the system's productive resources rather than draining them as passive consumers, waiting at the end of the line. But In Control only works when professionals play a quite different role. The family chooses which support workers to employ, what hours they should work and uses money flexibly to spend on treats, outings, different modes of transport, technology at home. The basis for this spending is usually a personal plan drawn up through intensive consultation between the client, their families, and social workers. The person centred plan provides the focal point for organising all care - formal and informal, provided by professional and friends and family. This is not a formal process of assessment like a means test. It does not involve lots of forms. Person centred planning has to be collaborative, down to earth and colloquial and plans have to adjust and adopted, as people change, they grow in confidence or their needs change. Critically people know from the outset roughly what kind of budget they are working with.
By turning people into participants in the process, rather than dependent service users, the clients and their families are more likely to commit their own time, effort and resources. They have an incentive to do so because that makes the money from social services go further. With more people becoming participants public services should be able to get higher productivity, better outcomes, more satisfied clients without spending vast sums more on professional services. The current model of professional service provision means to get more education you have to employ more teachers and build more schools. That is why public sector output only goes up in proportion to inputs and spending. But what if you could break through that constraint which so limits public sector productivity and do what computer games companies have done. A computer game with 1m players only needs 1% of them to be player-developers, adding back content to the game, and it has an unpaid workforce of co-developers of about 10,000 people. Imagine that logic applied to public services: it would untap vast new sources of innovation, ideas and effort. Traditional professional public services will be more effective the more they are designed to help and motivate users to generate their own content and solutions.
That at least is the promise. But the user generated state will only be possible, as In Control shows, if participative public services are well designed to make sure professional opposition is allayed or defused; risks are properly assessed by participants and professionals; spending it accounted for; people are given support, advice and tools to make informed choices; those with least confidence and resources are given additional support to make the best use of the choices available. Above all these approaches need to motivate people to want to help themselves and one another. Public services must not just serve people but motivate them to want to do more for themselves.
Traditional methods to squeeze more productivity and higher quality out of public service value chains - targets, inspection, outsourcing, downsizing, workforce flexibility - are painfully slow at delivering real improvements in efficiency and outcomes. They are running out of steam. That is why promoting participation should be at the heart of a new agenda for public services. Not participation in formal meeting or governance but participation in service design and delivery. Participation offers a way for people to devise more effective, personalised solutions, at lower unit cost than top down professional services. What would it take to apply the principles of In Control to much of the rest of the public sector to create user generated public services? How far could it extend? What kind of benefits would it bring? What are the potential risks and downsides of public services 2.0? We believe these five principles should be at the heart of this shift.
Five principles for Public Services 2.0
People are not consumers or users but participants
People
will only become participants in
creating service solutions if
they play a much larger role in
assessing their own needs, often
through consultation with
professionals and devising their
own plans, for their care,
education, re-entry into the
workforce, long term condition
management, local amenities.
In social care, for example, a
large share of the system's
resources are taken up with
professionals assessing user
need and then allocating
services to them. Service users
are largely passive in the
process. The assessments use
professional and bureaucratic
language are beyond the grasp of
most users. Filling out these
forms is frustrating and time
consuming for many carers: a
Mori survey in Scotland found
form filling was one of the most
significant activities unpaid
carers engaged in.
People
will need simple to use tools to
allow them to better self-assess
and plan for their needs. In
Bolton for example our design
team developed a deck of cards
for diabetics to use to
self-assess they way they manage
their condition and how it could
be improved. In the Brazilian
city of Curitiba, which has
pioneered innovative approaches
to participatory budgeting and
service design, families in
deprived neighbourhoods have
been given comic books to guide
them to self-assess their needs.
Person centred planning
techniques of the kind used in
the In Control programme allow
people to visualise the kind of
life they would like to lead and
how their care would have to be
organised to make that possible.
People make videos and draw
pictures to explain what they
need. All long term public
service users whether in health,
social care, education or
welfare should be encouraged to
self-assess and plan, using
simple tools to help people
visualise the support they
currently get, the life they
would like to lead and the kind
of supports, formal and
informal, that would require.
This process of self-assessment
is often only possible with the
advice and support of peers and
professionals. At the moment
professionals tend to assess
people's eligibility in a
formal, arms length process
designed to ration eligibility
to state services. A more
personalised approach would
require professionals to engage
in a more informal but also more
intimate conversation with
clients, over a period of time
to draw up and revise plans
together, looking at solutions
which lie beyond public
services.
Financial frameworks
Giving users greater say will count for very little unless money and resources respond to these choices. The financial frameworks for public services will need to change to support greater participation. In social care, education and health that will mean taking a wider view of the total resources available for social care. If service users can be encouraged to become co-producers, with their carers, then they become part of the productive resources of the social care system not just consumers of those resources. The development of preventative and community-based care services, to relieve demand on professional and public services, will only be possible with long term growth in volunteering and scaling up the capacity of voluntary organisations. The unpaid and volunteer services, provided within families and the community, will be vital to the long run sustainability of the system as a whole. Helping to further develop that volunteer, collective, community infrastructure, should be a priority for social care investment.
Public sector budgets need to change as well with more joint commissioning of services and buildings. Councils commission many services - transport, care packages, meals - as block contracts to reap economies of scale that come from standardisation. External providers, including the voluntary sector, like such block contracts because they provide them with stability. Yet such block contracts can also mitigate against personalisation by locking resources into inflexible contracts. Councils would need much more flexible models of contracting that would allow people more choice over services.
But we also need something much more radical: give the money to the people and trust them to use it wisely. The experience of In Control is that users feel greater control when they can assess how budgets are being spent on their behalf. That also encourages them to take more responsibility for their care and to devote more of their time and effort to it. The key, however, is to find financial solutions that meet people's needs rather than following a rigid formula for disaggregating budgets. Direct payments and fully individualised budgets work for people when they have self-confidence to make choices, the information they need to compare options, advice and support from peers and professionals. However handling direct payments, including employing your own staff, also brings anxieties and responsibilities that many people do not want. Indeed some clients given an individualised budget may choose to spend it on the service they are already receiving. People should have a range of options for how budgets are distributed, with direct payments and individual budgets at one end of the spectrum and traditional services and top down budget allocations at the other.
Most public services are a public-private finance initiative at the micro level of the family, mixing private, family, voluntary and state resources. The same is true of care for people with long-term health conditions and investments in education. An effective public service would mobilise all these resources not just the state's portion.
Professionals and workforce reform
Participative public services will only work with the support of staff as well as clients. Professional opposition to ceding control to clients or pupils who "cannot be trusted" will be one of the major obstacles. In many settings people will still want a professional solution. Someone going into hospital with a hernia does not want to be an active participant in the operation. They want to be well served by well-trained professionals. But often we need professional support to find our own solutions rather than a professional service upon which we come to depend. Indeed more participative approaches which relieve some of the management burdens from the shoulders of professionals may allow them to get back to their original professional vocation rather than acting as risk assessors and gate keepers.
Professionals would still play a critical role within a participative system but they would have to give up some of their power in exchange for a better quality of work. They would have to share assessment, planning and risk assessment with clients. They might have to accept working alongside para professionals. Professionals would play several roles as :
-
Advisers, helping clients to
self-assess their needs and
forge plans for their future
care.
- Navigators, helping clients
find their way to the services
they want.
- Brokers, helping clients to
assemble the right ingredients
of their service package from
different sources.
- Service providers, deploying
their professional skills
directly with clients.
- Risk assessors and auditors,
especially in complex cases
involving vulnerable people who
might be a risk to themselves or
other people.
Take social work as an example. Social work could be made more attractive and satisfying as a profession if social workers had less management responsibility, paperwork and bureaucracy. Yet that would mean social workers ceding management control to others. The development of para-professionals, such as social work assistants and expanding the role of care workers, would relieve some of the burden on social workers who sometimes seem to do jobs they are over-qualified for. The re-design of the role of social workers would need to trigger a re-design of the skills, responsibilities and roles of the wider social work workforce, including managers, para-professionals and unpaid carers.
Creating a wider market for services
There is no point giving users greater say over the services they want and even the budgets to commission services if supply is unable to respond to shifting demand. Participation in planning public service provision will mean nothing if services are trapped in rigid blocks, as in the case of Wigan's taxi service to take Joe to school.
The
following principles should
guide how services are organised
to support participation:
- Flexibility, so that provision
can be reconfigured easily to
meet shifting needs. If service
resources are tied up in
inflexible contracts or in
building based services, they
will not have the flexibility
needed to meeting changing
demands.
- Integration, so that different
services - housing, social care,
health and education - can be
combined, to create a joined-up
experience for service users.
That will require more joint
commissioning of services, more
joint planning of provision and
more work in partnership between
different services. People with
complex needs rarely find the
services they want within a
single department or even within
a single local authority. They
need support from several
different sources. Those
supports need to be integrated
to be effective.
- Variety, to provide people
with real choice over the style
of provision. Choice between two
standardised services is no
choice at all. People should be
offered a variety of modes of
provision, which might for
example, demand more or less of
them as participants.
- Innovation, so that they
social care system develops new
service options for people. A
prime example is exploring the
role digital technologies might
play in more personalised,
home-based care support, by
allowing more remote monitoring
of the health of frail and
elderly people to allow more
timely interventions to prevent
crises or respond to them more
effectively.
Participative and personalised
public services will require far
more flexible use of resources
to give users more say over the
services they get so that
differing needs can be met in
differing ways.
New measures of success
Too often
public service users and staff
report that the measures of
success reflect macro
performance targets and budgets
that pay too little attention to
user experience of services.
Feedback loops in public
services are very extended.
Service improvement is not
driven by direct user choices or
complaints but by external
regulation and reviews of
services, acting at one remove,
often after the event.
More participative approaches to
planning services would only
work if the participants also
define more of the standards and
outcomes. We need more person
centric measures of success in
education, health and social
care, to complement the top down
and macro measures of targets
and standards. User panels
should be more directly involved
in the formal regulation and
inspection of services. Users
also need more effective direct
triggers to force a change in
services when they fail to meet
agreed standards. Some public
service users feel they have no
option but to accept the service
that is available, no matter how
bad it is. Users need to be
given a right to options, such
as direct payments or
individualised budgets, to be
able to commission alternative
provision if the public services
they are getting do not come up
to scratch. Imagine the eBay
rating system applied to public
service provision, or a service
like TripAdvisor, the travel
site where people rate and
comment on hotels they have
stayed in. Public services users
need similar sites and services.
These five themes should be at
the heart of more participative
approaches to public services:
- Tools to give users more
choice and voice, to encourage
them to become participants in
shaping the services they get
and so to take more
responsibility for them,
investing their own resources
and ideas in better outcomes.
- A new financial frameworks to
encourage investment in
community-based prevention,
allow integration of different
public service budgets around
shared social goals and devolve
more spending directly to users
so services are commissioned
around their plans. At a micro
level of the family all care,
welfare, health and education is
a public-private finance
initiative.
- A new division of labour
within public service
workforces, with the growth of
para-professional assistants,
support workers and managers,
that will in turn allow a
revival in professional
vocational roles. social work
based around the roles of
adviser, navigator, advocate,
broker, counsellor, risk
assessor and designer.
- Continued development of a
mixed economy provision so that
user choices can be translated
into service provision. That
will require services that are
more flexible, integrated,
diverse, innovative and
cost-effective.
- New measures of performance
which give users greater say
over service quality and new
rights for users to switch
services when quality falls
below an agreed threshold.
Radical innovation rarely starts in the mainstream. It often starts in marginal markets with committed, educated and knowledgeable users creating radically new products or services. In the private sector, especially in media, music and culture, the margins are becoming the mainstream faster than ever: eBay went from 122 participants in 1995 to 122m participants in 2005. In the public sector innovations in the margins like In Control often get trapped on location, they never develop and propagate. How would we take the principles of participative public services developed by In Control into mainstream public services. There is no better example of why that is needed and how it could happen than health.
A
health service 2.0
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.
As he put it in Deschooling
Society : "The pupil is
"schooled" to confuse teaching
with learning, grade advancement
with education, a diploma with
competence, and fluency with the
ability to say something new.
His imagination is "schooled" to
accept service in place of
value. Medical treatment is
mistaken for health care, social
work for the improvement of
community life, police
protection for safety, military
poise for national security, the
rat race for productive work.
Health, learning, dignity,
independence and creative
endeavour are defined as little
more than the performance of the
institutions which claim to
serve these ends, and their
improvement is made to depend on
allocating more resources to the
management of hospitals, schools
and other agencies in question."
Illich was writing for a different time, when Mao was in power, before Watergate, when the left was still counter cultural, utopian and radical, the Vietnam war was being prosecuted and the welfare state was in its prime, before the rise of the free-market right, globalisation and single issue politics. Yet Illich was ahead of his time by being behind the times: his critique of industrialisation harked back to pre-industrial, communal forms of organisation, as well as foreseeing a world of networks and webs long before the Internet.
For much of the 1970s he was a darling of the left, sharing some intellectual common ground with Herbert Marcuse and the Frankfurt School's critique of a one dimensional society, run by large corporations in which were insidiously encouraged to see everything as a commodity. He was an environmentalist before the movement had been born and lived a spartan life with few possessions. Yet Illich was no lefty. Although he was deeply at odds with the Vatican, he never left the Catholic priesthood. He dismayed many of his left-wing fans with a withering attack on Castro's Cuba and his defence of the traditional gender roles, which enraged feminists. Indeed many on the right would have found aspects of his ideas attractive. Illich was in some respects profoundly conservative and anti not just industrialism but all things modern. But he was also a libertarian, an early advocate of a version of education vouchers and individual choice in public services. Illich died in 2002, from a cancer he had for many years but which he refused to have treated by doctors. He believed modern society encouraged the delusion that life could be lived without pain and suffering. Towards the end of his life his writing became more apocalyptic, at times melancholy and pessimistic.
Yet in a short, golden period in the mid-1970s, Illich set out not just a critique of industrial era institutions and professionals but also some highly suggestive ideas on how they might find a more supportive, realistic and balanced role in society. Those ideas now have even more purchase on a world were people are less deferential, professionals are less trusted, consumers are better informed and more assertive, and knowledge is available from many more sources. Illich's ideas deserve revisiting.
- -
The UK National Health Service is one of the largest remaining planned economies in the world and the debate is all about how to bring an element of perestroika to a system that like the Soviet Union of old depends on people queuing for a long time, rations treatment and provides highly variable quality. All over the developed world the assumption is the same: health is what hospitals and doctors deliver. The more that hospitals can produce high quality, personalised, mass customised treatment, along a more or less linear patient pathway which looks something like a production line, the better health care we will get. The patient goes in at one end ill, is worked on by doctors and nurses, and emerges out the other, like a finished product, well again.
The scale and significance of the hospital reform programmes, focussed on acute care, should not be minimised. Quality of care in hospitals is still too variable. But most hospital focussed health reforms seem to be addressing the symptoms of professional stress and organisational breakdown, rather than the underlying causes. The hospital based health care system was a response to the spread of contagious and acute disease born by urbanisation and industrialisation in the late 19th century. Now this system of professional diagnosis, prescription and monitoring has to deal an epidemic of chronic disease, much of it associated with a society in which people live for longer. Even cancer is becoming more like a long-term condition to be lived with and fought against. It is no longer an automatic death sentence.
In the UK, 45% of the adult population have one or more long-standing medical condition. Amongst the population more than 75 years old, the fastest growing group of the population, the figure is 75%. By 2030 the proportion of 65-year olds with a long-term condition will double. In 1990, heart conditions and cancer were responsible for 19% of deaths: most people died too young to be troubled by chronic conditions. In 2004 circulatory diseases and cancer were responsible for 63% of deaths. They are one of the main reasons people go to see doctors. About 80% of consultations with a general practitioner are about as aspect of a long-term condition. Another 10% are for minor ailments and conditions that are best dealt with through self-treatment and over the counter drugs. General practice is increasingly a reassurance service for people who have minor ailments that doctors can do little or nothing about or long-term conditions that are also incurable. Chief among these chronic is diabetes. In the UK more than 2m people are diagnosed diabetics and a further 1m - the missing million - are diabetic without realising it. Internationally the rate of diagnosed diabetes has doubled in 20 years and will double again in the next 20 years. If type two diabetes, which is linked to lifestyle, is caught early its development can be kept in check. Yet between 40% and 50% of diabetes is not diagnosed until it is too late. Then people become dependent upon regular insulin injections, which in the UK involves repeat visits to the doctor. Diabetes, in principle a preventable and manageable condition, costs the NHS £5m a day, 5% of total NHS expenditure and 10% of hospital in-patient costs. The hospital based health system, with heavy fixed costs of buildings and professional staff, is ill designed to prevent and manage these i-diseases: chronic conditions that arise from lifestyle and need to be managed in the community.
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.
From Rhetoric to Reality
The government has at least started to acknowledge the need to shift in this direction in some areas, most obviously in social care, with the 2006 White Paper Our Health, Our Say, which envisaged a move towards much greater individualised budgets. In education personalised learning should open the space for more participative approaches. Already the tax system relies on regulated self assessment and other areas could follow suit. The most impressive welfare to work programmes, for example those run by Work Directions in Birmingham, rely on mobilising the motivation of participants to follow through their plans. The 2006 local government White Paper envisaged greater decentralisation of power and budgets - double devolution - which should encourage greater community participation in decision making. Responses to climate change will require large changes in individual behaviour as well as investments in new infrastructures for energy and transport.
Yet despite the rhetorical backing for more participative approaches the progress on the ground is more limited for three main reasons. First, established, mainstream services still gobble up most of the resources, most clearly in the health system. It is difficult to create a new community based and participative health care system when most of the resources are still locked up in servicing large hospitals. Second, most attempts at promoting participation are locked into the current system: they are sustaining innovations designed to make the current system work better rather than radical and disruptive innovations designed to create something new. The prime example is the expert patient programme which enlists people to become better patients within the NHS system rather than promoting wider change. Thirdly, creating more participative approaches is not easy and as In Control shows it takes not just thoughtful design but also a good deal of political struggle to fight off opposition from vested and professional interests.
Attempts to create the user
generated public sector will
have to confront twelve main
issues:
- Economics: is it too costly?
The assumption is that
participative approaches require
lots more support from
professionals to tailor
solutions to individual needs
and people will tend to want to
claim and spend more. The
evidence from In Control is that
participative approaches do noy
have to be more expensive so
long as authorities employ
realistic cost controls and
encourage people to mobilise
complementary resources.
- Equity: is it just for the
middle classes?
The assumption is that
opportunities for choice and
participation will be taken by
the most articulate and
confident. The professionally
controlled state system at least
protects the vulnerable with
some guarantee of equity. Yet In
Control has managed to give
voice and control to some of the
most vulnerable and at risk
people in society. Mass state
services do not guarantee
consistency and equity: they can
be highly arbitrary and
capricious in the way they
allocate funding and make
decisions. Well designed
participative approaches benefit
those least able to benefit from
the current system. The
implications for equity depend
on how they are designed and who
they are designed for. Choice
and participation can benefit
the least well off if the
systems are designed for them.
- Fraud and risk: will greater
freedom be abused?
Previous experiences with co
individualised budgets such as
Individual Learning Accounts
suggests there may be
considereable scope for fraud
and abuse. Yet In Control
suggests not: most people do not
try to over claim and they are
very careful spenders of their
money. Once it becomes their
money they tend to look after it
very well, as Caroline Tomlinson
says getting maximum value for
money from it.
- Changing roles of
professionals
Professional power is at the
heart of public service system
of assessing need, regulating
risk and measuring quality of
outcomes. More person centred
approaches to planning would
challenge professional power and
so provoke resistance.
Successful In Control
authorities have developed
approaches that bring clear
compensating benefits to
professionals, for example by
restoring professional
vocational roles. Strategies for
workforce reform and expansion -
bringing in a wider range of
skills and support - will be
critical. Strategies for
professional development and
workforce reform need to be
central to the shift to PPS.
- Supply side response
Most public service provision is
organised around inflexible
blocks of services: schools,
hospitals and prisons or block
contracts for care. This
rigidity, justified by economies
of scale, limits the ability to
services to respond to specific
needs. Users tend to be fitted
into the service boxers
available to them. Public
authorities will have to develop
different ways for services to
be procured that allow for more
personalisation and flexibility.
However it is also essential
there should be "backwards
compatibility" : the new system
must also provide room for
elements of traditional services
that some people will want.
- Audit and accountability
How should individuals account
for the money they spend? Fear
that individuals might mis-spend
money is one justification for
continued professional control
over budgets and onerous
requirements to account for
spending. In Control recognises
people need to account for how
they spend the money but this is
made as simple as possible and
linked to their care plan. The
most effective way to kill off
participative approaches is to
distribute funding through
individualised budgets but then
re-regulate and audit in great
detail what people can spend
their money on: giving with one
hand but taking back with the
other. Finding realistic, robust
but simple forms of
accountability will be
essential. This needs to be
linked to new person centric
measures of outcomes.
- Regulation and Risk
In social care authorities will
be concerned that greater
individual discretion to shape
care might lead people to take
risks which would put the
authority in jeopardy of a
breach of duty of care. Person
centred plans must involve a
redistribution of risk
assessment and responsibility
away from professionals. But
this needs to be made clear:
giving people individualised
budgets means them also taking
on more responsibility for
handling risk.
- Regulation and Innovation
Participative approaches will be
at odds with regulation, that
might punish rather than reward
or encourage innovation.
Innovating authorities need to
know how regulators and
inspection regimes will respond.
Most public service regulation
and inspection is designed to
guarantee consistency and
delivery of standards. In
participative public services
inspection would need to
encourage and endorse far
greater diversity of outcomes.
- Building participant
confidence
Different
participants will come with
different levels of confidence,
support, networks, friends and
family. A participative approach
would have to be very responsive
to their different needs,
starting points and resources.
Not everyone is ready or wants
to be a participant. Most
people, some of the time, will
want to be consumers. Some
people will want to be in that
position all of the time.
- The role of the voluntary
sector
The voluntary sector will be
vital to provide additional
support and services for people
to self-help. Building the
voluntary sector's capacity to
support person centred services
will be vital. But some
voluntary groups see their main
role as advocates for better
services within the traditional
professional service model.
- Political leadership
The scale of the transformation
and the risks involved will
require committed political
leadership at central and local
level to meet professional
opposition to ceding control,
media scare stories about risk
and fraud and public concerns
that participative solutions are
really a back door route to cut
services.
- Scaling
up
The biggest challenge in all
social and public innovation is
how to scale up promising ideas.
What is being scaled up? (An
idea, a set of principles, a set
of tools, an organisation?) How
is it being scaled? (Through
franchising, policy
prescription, campaigning,
organisational growth?) In
Control is an alliance between
enlightened professionals,
participants, carers and
councils to create a new set of
solutions tailored to individual
aspirations. The In Control
community has an open source
feel to it: ideas and
improvements are readily shared.
Simon Duffy's In Control's
director talks of it as an
operating system for social
care, which can be adapted and
amended in different contexts
applied to different needs.
Scaling will also be helped by
making the system quite modular,
so that people can pick, choose
and improve just what they want
to focus upon. Most open source
software projects that attract a
large developer community have
this modular structure which
allows many people to
participate in its development.
The technology writer Tim
O'Reilly calls this an
"architecture of participation"
- which encourages many people
to make contributions and
ensures they all add up. The web
has an architecture of
participation: it invites people
- most people - to take part.
Public services do not always
come with such a welcome.
Participative solutions cannot
be mandated top down. The centre
can help create the conditions
for them to emerge - for example
by promoting individualised
budgets for social care and long
term conditions - but it cannot
mandate what outcomes should be
achieved. Participative public
services are far more likely to
spread by word of mouth, peer to
peer, just as social networking
has.
Public Services 2.0
We need a new way to create
public goods that take their
lead from the culture of
self-organisation and
participation emerging from the
Web that forms a central part of
modern culture, especially for
young consumers and future
citizens. Increasingly the state
cannot deliver collective
solutions from on high: it is
too cumbersome and distant. The
state can help to create public
goods - like better education
and health - by encouraging them
to emerge from within society.
The tax system increasingly
depends on mass involvement in
self-assessment and reporting.
Welfare to work and active
labour market programmes depend
on the user as a participant,
who takes responsibility for
building up their skills and
contacts. Neighbourhood renewal
has to come from within
localities, it cannot be
delivered top down from the
state. Public goods are rarely
created by the state alone but
by cumulative changes in private
behaviour.
The chief challenge facing
government in a liberal and open
society is how to help create
public goods - like a well
educated population, with a
appetite to learn - in a society
with a democratic ethos, which
prizes individual freedom and
wants to be self-organising and
"bottom-up". Government cannot
decide on its definition of the
public good and impose it from
above, at least not continually.
But nor can it stand back and
accept whatever emerges from
self organising systems.
Government's role is to shape
freedom: getting people to
exercise choice in a
collectively responsible way and
so participate in creating
public goods.
Productivity should rise because
highly participative services
can mobilise users as
co-developers and co-producers,
multiplying the resources
available. Participation allows
solutions to be tailored more
readily to individual needs and
aspirations; people have to
share responsibility for
outcomes and devote some of
their own inputs. Participation
is the best anti-dote to
dependency if they equip people
with tools so they can
self-provide and self-manage
rather than relying on
professional solutions and
services. Participative
approaches are not only vital to
create more personalised
versions of existing services -
like health and education - but
also to address emerging needs
and issues - such as waste and
recycling, community safety and
long term conditions - where
public outcomes depend on
motivating widespread changes to
individual behaviour.
Participative public services
connect the individual and the
collective in new and far more
powerful ways than seeing people
as taxpayers, occasional
consumers and even more
infrequent voters.
The triumph of the modern
industrial public sector is is
the creation of institutions on
a vast scale, which provide
services such as education,
health and policing, that were
might have once been limited to
just a few. These universal
systems aspire to deliver
services that are fair and
reliable. Yet that in turn
requires codes, protocols and
procedures, which often make
them dehumanising. After Ivan
Illich trained as a priest he
went to work in a poor Puerto
Rican neighbourhood in New York
and he was struck by how many
other institutions seemed to be
modelled on the church and how
many professions seemed to take
their cue from the priesthood.
These institutions and the
resources they control become
the power base for the new
priesthoods: the public service
professionals.
The dominance of professions,
creates two big problems,
according to Illich:
counter-productivity and
dependency culture.
As people become more dependent
on the expert knowledge of
professionals so they lose faith
in their own capacity to act.
The rise of professional power
is mirrored by a loss of
individual responsibility. We
become cases to be processed by
the system. Education and health
come to be commodities to be
acquired rather than
capabilities we develop in
ourselves to live better lives.
We now identify services
delivered by professionals with
the ultimate goods we want as a
society: health, learning,
safety, order, justice.
- - -
First, public institutions and
professional should educate us
towards self-help and
self-reliance as much as
possible. As Ivan Illich put it
in Deschooling Society in 1972:
"Good institutions encourage
self-assembly, re-use and
repair. They do not just serve
people but create capabilities
in people, support initiative
rather than supplant it." Almost
thirty years later the Wanless
Review of health spending
reached exactly the same
conclusion. We will only become
a healthy society if we restore
the proper balance between
professional service and
self-help. The golden rule must
be that instruction by
professionals must never
outweigh opportunities for
independent learning; any
service must be designed to
motivate and enable self-help.
We need much greater emphasis on
intelligent self-assessment and
self-evaluation. That is already
the lynchpin of the tax system
and should play a greater role
in education and health. The
education system schools us to
think of assessments as exams,
something we do at the end of
the pipeline, checked by a
professional. We need an
education system that builds up
capacity for intelligent
self-evaluation, so that we are
better equipped to assess and
solve problems under our own
steam, with the help of our
peers and professionals if
needed. An education system for
the 21st century would have
constant self-evaluation, much
of it through peer to peer
criticism and support, at its
core.
In Limits to Medicine Illich
described goal of making health
as a personal task, which people
must take responsibility for
this way: "Success in this
personal task is in large part
the result of the
self-awareness, self-discipline,
and inner resources by which
each person regulates his own
daily rhythm and actions, his
diet and sexual activity...The
level of public health
corresponds to the degree to
which the means and
responsibility for coping with
illness are distributed among
the total population."
These ideas are not appropriate to every aspect of public services. People in need of urgent and acute surgery do not generally want to be participants in the process: they want a good service, delivered by professionals. Too often the ethic of self-help can be used to get us, the users, to do more of the work ourselves. Self-service is not the same as participation.
Yet the range of ways we can create public goods is expanding. In energy, for example, nuclear power might provide part of the solution to global warming but so too could highly distributed, domestic micro-generation. Schools and hospitals will continue to exist but in an environment where more learning and health care can be delivered, informally and at home. People will want to be consumers some of time, participants at other times, when it makes sense for them.
And just
for a moment think ahead.
Imagine what it will be like in
ten years time, as public
services seek to serve people
who have grown up with Bebo and
social networking, MSN instant
messaging, buying and selling on
eBay, looking up stuff on
Wikipedia, getting their music
via My Space, playing multi
users games and broadcasting
themselves across YouTube and
its successors. Across much of
culture and commerce a huge
shift is underway: as technology
lowers barriers to entry people
are slowly finding their voice.
The people we used to call the
audience are taking to the
stage, or at least the stages
they want to set up. And they
are getting used to copying,
mimicking, commenting, rating
and ranking whatever they see. A
public sector that does not
utilise the power of user
generated content will not just
look old, outdated and tired. It
will also be far less productive
and effective in creating public
goods. The big challenge for
public service reform is not
just to make services more like
Fed Ex, more efficient and
reliable. There is now another
big challenge: to make public
services as participative,
communal and collective as the
best of what it emerging from
the new collaborative culture.
That is why in future every
public service must carry with
it an invitation to participate.