People-powered health – co-creating a new story of health
Following the Health Commons Gathering in October 2012, I wrote this article which was published in the Journal for Holistic Healthcare, Volume 9 Issue 3 Dec 2012.
Summary: Keeping well is not just a personal responsibility but a community one as well. Our interconnectedness means our body and our health is not private property. Faced with an information explosion, we also need to collaborate to thrive. The author looks forward to a Commons Roadmap to Sustainable Health to parallel the NHS sustainable development routemap.
In a commons-based society, relationships and networks that sustain communities will be most highly valued, and users will not be separated from producers. Commons are based on an understanding that we all belong to the earth and not that the earth belongs to us. As commoners we experience ourselves as stewards of the earth’s resources and treat each other accordingly. There is a recognition that knowledge that is owned and enclosed will die out. The open source movement recognises that knowledge increases, can be updated and made useful when shared freely and continually added to and improved. Assuming that a group of trained experts will keep up the skillset to ensure optimal performance over time has become unrealistic. Too many elements are changing too drastically too quickly and traditional safeguards for business models based on intellectual property rights are likely to impede evolution of new and better functioning solutions. With our current pace of change, we will need to find ways to spread the work to be done beyond narrow expert groups to the wider skillset within the nonexpert general community.1
My health, your health and the health of everyone is too important to leave in the hands of medical experts. People know that which is why, more and more often, they are coming together in patient self-help groups, or searching information on the Internet, or benefiting from the services of community health champions.2
In the process of building a sustainable people-powered health system, both technological and person-to-person community solutions are destined to play crucial roles. But sustainable health solutions will only work if we co-produce them and can ensure their accountability for the decisions made. Not that the specialised medical knowledge of experts is without value; the problem is that specialisation necessarily focuses on the parts, often treating symptoms in isolation from one another and without reference to the functioning of the whole body; dealing with illnesses without any sense of their relation to the life and work predicaments that perhaps triggered or maintains them. Experts often work in their own sub-cultural ‘silos’ within hierarchical organisations lacking the required horizontal (multi-disciplinary) integration that could take full account of the whole person, their community and environment. And so we need a better way forward, not only for the sake and safety of all who use the healthcare system, but for the wellbeing of all who work in it. Perhaps above all we need a vision and values that honour the whole person and the vital social dimension of healing.
Personal health is a commons
When I imagine what creating a commons of health might entail, there are two observations that support my vision.
Firstly no matter how much we are able to learn about health, we can’t possibly know everything that might directly affect our wellbeing. For example what do you do when you feel discomfort or pain? Do you immediately visit a health practitioner and let yourself rely entirely on their knowledge and expertise? Or do you, like most people, ask around friends, colleagues and family – or increasingly join the millions who search online for knowledge that could help explain possible causes and cures? So when we feel unwell most of us turn in one way or another to some sort of community to try and figure out what is happening, and to find out what we can do about it. More and more people get information about problems from the internet before they even think about visiting a health practitioner. Sometimes they join online forums to exchange information and link up with people who have similar issues and needs. Faced with this information explosion it’s plain to see that the more we learn about our human and social body, the more we realise how relatively little we know. So in our fast-changing world, the art of keeping healthy and in balance is going to require collaboration. It is obvious then, that my own health is a communal as well as a personal concern, and that we cannot thrive alone. Our challenge now is to co-create resilience and share knowledge about health and wellbeing by working with other people. Stewarding our health, as a common responsibility.
Second, because my existence is always connected withother human beings, I don’t own my body and my health in the same way I might own private property. When I benefit by collaborating and sharing knowledge about keeping well, so do family, friends, my other significant relationships and colleagues. Keeping well is a responsibility I have towards those I love and connect with. This realisation of inter-connectedness, that we are not isolated islands, may happen at a cognitive level or more deeply at a heart level. Wherever it starts though, love and caring only become deeply felt realities that begin to drive our thinking and doing, when this understanding transforms into an embodied change in attitude to each other and to the world around. This inner awareness of connectedness can’t be taught, but perhaps it can be learned through conscious intention nurtured and strengthened by reflective practice. And no doubt it is only through large-scale transformation that our societies will come to be woven from webs of mutually caring relationships. Yet if we can imagine this compassionate world, and having pre-sensed that possible future, surely we must be able it to bring it forth? It may even be that the first steps on this collective journey have already begun in communities that build trust and where personal relationships truly matter. What would be the role of a commons of health in helping the greater transformation come about?
Building communities and relationships of trust. Given our current planetary predicament, it seems hard to conceive of new institutions that can help realise humankind’s potential, let alone that could set out to build systems capable of cultivating authenticity, and where communities and organisations lived as one humanity in awareness of the one life. Yet more and more of us believe that such a world is possible, where the wellbeing and nurturing of every part is the aim of the whole (and vice versa). As more and more people spontaneously imagine this possible future, I believe an emergent culture of commons will become a compelling force for change. I sensed the possibility of such a powerful convergence of healing intentions during a recent Health Commons seminar where 30 of us – from varied organisations and with diverse skills – gathered in a circle for a day of discovery and learning with the economist James Quilligan, former Director of the Coalition for the Global Commons, who introduced us to the Commons Framework for Healthcare.3,4
The health commons seminar
After opening our day together with a short reflectivesilence, our host started the check-in by introducing us to the principles of the art of listening – of speaking and listening with intention. We shared in turn why this gathering was special to us, and why we had chosen to participate in this particular event. We agreed to share responsibility for the quality of our day together and to be mindful of serving the whole rather than bringing in our personal agendas. It was with this awareness in mind that we shared experiences, insights, dreams and aspirations – learning from one another and listening in the space between for what wanted to emerge. The morning’s presentations helped draw out some new, healthier principles and practices for an emerging commons in healthcare – the seeds of a Commons Roadmap to Sustainable Healthcare which could parallel the existing NHS Sustainable Development Unit Routemap.5 In the afternoon, world-cafe style conversations explored commons principles and how we related to them. These small groups allowed everyone to contribute and our table hosts became the connectors between different rounds of conversations. All this made the day rich with insights and learning about the possibilities in an emerging commons of healthcare. And interestingly, as we co-created our commons principles for healthcare, the whole discourse shifted from cure and disease to behaviour and wellbeing.
On an issues list for a shared community agenda4 the theme of ‘building community and connection’ ranked the highest. Given that all of our lives and our work are connected to people and communities and that everything arises from that, it is understandable that this theme should have attracted so much interest: an acknowledgement of the vital importance of community and relationships in the creation of health. For the future progress of our commons roadmap it will be essential that we explore answers to these questions: • how do we heal a fractured world? • what resources do we need to create? • how are we going to take care of them in ensure their long-term sustainability?
The second theme, ‘how are we to organise to increase a commoning approach to health and wellbeing?’ highlights the importance of finding a common-ing language that allows us to build wide enough support by engaging people and organisations at the places where they stand now, and in ways that attract some of them to begin codeveloping a vision, and then engage in joint approaches. The theme which has so far attracted most energy since the event is how to scale up prevention and self-care. This may be where we, as practitioners and organisers, are already making a noticeable difference, and where we could do a lot more were we to work together in more intentional and strategic ways. Because self-care and prevention are arguably the weakest areas in our present healthcare system, even though if properly integrated they could in the long term make the biggest difference in reducing suffering and costs. The questions this group has begun exploring in our online community suggest that a profound shift towards holistic thinking and doing will be needed before self-care and prevention rise up the NHS agenda. This shift probably depends on a deeper shift in our culture’s grasp of the inter connectedness of all life, and of our part as ‘individuals’ in the whole ecosystem of health. Conversations have continued online on a hosted platform with open access called CommonsRising. It has been designed for building commons in various areas of our lives. Anyone passionate about health and social care with a curiosity about the commons is warmly invited to join the Commons of Health & Wellbeing Group.6
One participant commented: ‘Here, I was part of a circle of people who cared deeply about health and care for health, and nobody had power or control over the other person. I enjoyed seeing “the art of hosting” in action, and to be part of this circle. I’m still struggling to get a clear image of what the “commons of health” actually is (besides being a community of people), and what the main elements are of a commons routemap. But that’s not important at this moment in time, when I’ve just witnessed the birth of something new. I’m confident that the emergence of the health provisions of the commons (alongside provisions by the market and the state) is what we need to realise our common good and a good life through sustainable health and care for health. … It’s not good that citizens needing help, once they have entered the doors of a hospital become patients by giving their power to professionals providing services … instead of co-producing services and co-creating health as two citizens in relationship. We started with a circle of about 30 people. We need to enlarge the circle and include more managers and workers in institutional and professional healthcare and continue the dialogue!’ The questions that emerged from our collective enquiry have been posted on the online CommonsRising platform.4
These questions have become valued resources, because it will be in the process of finding answers through collaborative enquiry and generative conversations, that we will begin to create a lively and creative community of commoners. James Quilligan nailed it for me when he said: ‘By becoming a vital part of the commons-building process, even our motivations, knowledge and skills become part of the whole production process, leading us to a new way of co-ordinating social and economic life where the community of producers also decides how to manage its own resources and how to govern itself ’. This means that from a commons perspective, truly empowered communities and individuals not only collaborate and co-create resources, but in so doing also grow their capacity and skills for governing themselves and for deciding collectively about the allocation and use of these resources’.
Accountability In the commoning sense, what do we mean by accountability?
Accountability is what I take on when I offer to be responsible for making a desired and jointly agreed goal come about. This kind of accountability has to be personal and self-motivated; it absolutely cannot be forced on anyone. Accountability in this sense is probably the key to sustainable commons relationships and sustainable communities. It is freely taken on when, rather than waiting to be told what needs doing, we ask ourselves what it might be that others can count on us to contribute as our gift to the community. This creates a different kind of motivation. For example if as a reader you resonate with these ideas and feel inspired (as we hope you will), then your natural next step would be to offer to be accountable for an action you feel could bring us all closer to realising our shared vision. Only bottom-up accountability offered as a gift to community can replace top-down accountability.
Health commons and accountability in James Quilligan’s words: ‘Rather than outsourcing responsibility for public service to government or to corporations, which creates top-down service delivery structure, new accountability structures must develop which allow communities to guarantee and manage healthcare for their members. Communities can form their own health trusts that would ensure that resource users are driving the health process, not resource providers or managers. By involving resource-users in the process of producing their own resources, new forms of value, co-operation and trusteeship will emerge. ‘The “commons” highlights this shift to move healthcare into community, towards producers and users of the resources, who in the commons are not separated but the same. Creating new political accountability structures through social charters and health trusts would enable communities to obtain quality health care services on their own terms. It would lead to improved equity of services, the reduction of institutional barriers of governments, enhancing participation in local government, strengthening civil society associations and creating healthy public policies which lead to improved health.’7
We need a new infrastructure that enables and empowers people. In order to become a sustainable organisation that produces sustainably healthy people the NHS and its commissioning bodies need to transform from seeing itself as an ‘ill health service’ to one that enables a ‘health and wellbeing service’ focused on an upstream preventative approach.8
An NHS fit to deal with healthcare’s increasing complexity needs to be redesigned, informed by a systemic perspective. The vertical structures need to be complemented with the horizontal structures that can mobilise the collective intelligence and wisdom of NHS staff, other health workers and patients. Holistic thinking needs to inform medical and healthcare training and practice in a redesigned healthcare system. In this vision there would still be – as there is now – a gap, which the commons framework would fill, because it will always be necessary to involve communities directly in co-producing the kind of sustainable organisational structures that alone can be truly sensitive and responsive to local needs. It will play an important role in empowering civil society to eventually become as important as, if not more influential in healthcare than the traditional two sectors of market and state.
Michael Bauwens, the founder of the peer-to-peer foundation, describes a state with a public authority of this nature as a ‘partner state’ which would supersede the welfare-state and the market-state.9 He describes a ‘reform’ of the state, towards more of a partner state model, whereby public authorities like the NHS empower and enable the social production of value by civil society, and in this way sustain a wide variety of commons oriented institutions and practices.
1 Oram A (2012) Open source software as a model for healthcare. Available at: http://strata.oreilly.com/2012/10/open-source-softwareas-a-model-for-hea... (accessed 8 November 2012).
2 South J, White J, Raine G (2010) Community health champions, evidence summary by Altogether Better. Leeds: Centre for Health Promotion Research, Leeds Metropolitan University.
3 Betz A (2012) Co-creating a people-powered healthcare. Available at: www.schoolofcommoning.com/content/co-creatingpeople-powered-healthcare (accessed 8 November 2012).
4 Betz A (2012) Harvest of co-creating people-powered healthcare. Available at: http://commonsrising.ning.com/group/commons-ofhealth-and-well-being/page... creating-a-peoplepowered-healthcare-23rd-october (accessed 8 November 2012).
5 NHS Sustainable Development Unit Roadmap. Available at: www.sdu.nhs.uk/publications-resources/55/Route-Map-for-Sustainable-Healt... (accessed 8 November 2012).
6 Commons Rising online platform, Commons of Health & Wellbeing group. Available at: http://commonsrising.ning.com/group/commons-of-health-and-well-being (accessed 8 November 2012).
7 Quilligan J (2012) Health commons: a new paradigm. Available at: www.schoolofcommoning.com/content/health-commons-newparadigm# overlay-c... (accessed 8 November 2012).
8 Mackenzie J (2011) The old care paradigm is dead, long live the new sustainable care paradigm: how can GP commissioning consortia meet the demand challenges of 21st century healthcare? London journal of primary care 4: 65–9.
9 Bauwens M (2011) Peer to Peer Foundation Blog. Available at: http://blog.p2pfoundation.net/the-basic-orientation-of-p2p-theorytowards... (accessed 8 November 2012).