It is so frustrating to see truly radical and potentially powerful concepts being latched upon by those entrenched in the “system”. And when they are done with hijacking these terms and rebranding them to death, they make up their own. Classics I have heard recently: UnDiffusing, UnPrescribing and the famous decision by Sussex Partnership to relabel patients on acute MH wards as “Service Leader” even in the case of an enquiry into inappropriate use of restraint. To render the staff sufficiently “special and different” they are now termed Leader Leaders with their own Leader Leadership Academy.
In other words, WIA has become a documentary:
Co-production is one such buzzword very often used as a rebadging of patient/service user involvement. I see widespread co-option and dilution of more radical concepts like this in order perhaps to be able to slot them into existing structures without the risky and scary business of actual change.
Defining the Indefinable
The New Economics Foundation (NEF) defines Co-production as follows: “Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours. Where activities are co-produced in this way, both services and neighbourhoods become far more effective agents of change” (NEF 2009)
The key words are “equal” “reciprocal” and “agents of change”.
It is NOT a synonym for public engagement, service user involvement or consultation. It is NOT just allowing people a say in decisions about themselves individually or collectively, and above all it is not something which retains power in the hands of professionals with the patient or service user brought in at a later stage.
As Jane McGrath @WeCoproduce of West London Collaborative rightly states
“I regularly have to challenge very senior people and we often get stuck at some point during the process. This usually revolves around denial of one consistent and very inconvenient truth: patient involvement is not co-production.”
If we know what is NOT, then what IS it?
The term was first coined by Elinor Ostrom at Indiana University whose receipt of the Nobel Prize came as a surprise to many. Read more about her here:
The key point she was making was that public services were shown to work best when designed and run by a combination of professional expertise and community insight. Ostrom’s work divides participation into individual and collective levels. This is very relevant to health care. We can participate as individuals in terms of how we take responsibility for our own health and in sharing decisions with professionals but we can also link up with others either with similar issues or set of values to participate on a wider level in order to influence change as a powerful group. For more on Ostrom’s thinking developed in a healthcare context take a look at this article:
Looking behind the buzzword early on by going right back to its roots created in me a pilot light that ignites when genuine Co-production is present and a warning bell that rings when it is being talked about but is there in name only.
The trouble with defining co-production is that it is primarily a reframing of the traditional citizen recipient/service provider relationship – from parent/child to adult/adult. it is more of a mindset than a model hence the difficulty faced by those in a system that relies on boxes and spreadsheets. Those who feel naked without a precise definition are undoubtedly likely to feel very threatened for it is not a model, it is a way of being, acting and thinking. It is about seeing people not just as bundles of needs but as possessors of assets irrespective of how “throwaway” society may consider them.
“Throwaway People” was coined by Professor Edgar Cahn. Cahn, a US civil rights lawyer and speechwriter for Robert Kennedy, suffered a massive coronary at 45. Pondering in his hospital bed upon the resulting apparent loss of who and what he was before he became ill and how that felt, he went on to found the Time Banking movement. This provided a vehicle to make Co-production a reality – the practical means to see to see those declared useless by society for whatever reason, valued for their assets, skills and life experience.
I read his seminal work “No More Throwaway People” and it immediately resonated particularly regarding the feeling that his heart attack seemed to rob him of more than just his health.
“I didn’t like feeling useless. My idea of who I was – the “me” that I valued – was someone who could be special for others, who could do something they needed. And here I was, a passive recipient of everyone else’s help” (Cahn, 2000)
Are we blobs or squares?
We true co-producers are brave enough to pitch our tent in the no-man’s land between the factions which provides that space where we can venture out of the bunkers and over the patient/professional demarcation lines.
The Parable of the Blobs and Squares was created by Edgar to explain the complex issues around identity which may arise when people endeavour to put the theory of Co-production into practice.
Are we blobs or squares? Does your job title or other labels require you to change your basic shape in order to fit?
Or are you perhaps safer in the “patient” box? I was consigned to this box early on and though it was dark in there, it started to feel way safer.
How do we bridge the gap between two tribes of “them” versus “us” in practice?
As a healthcare professional you may be under pressure of deadlines and in possession of an ever-dwindling budget. Suddenly you are being challenged by patients to be less controlling. As a patient, I might have become ground down and cynical after years of attending events labelled “co-production” where the status quo has remained firmly in place and the locus of control firmly still in the hands of paid professional. I might be wheeled out to be “inspirational” while all the time screaming internally “but I could do so much MORE if you would let me!” This is where the Bridge Builders come in.
My thinking around this as usual came about from a very uncomfortable situation. I was delighted to be asked to work on a stand at the prestigious BMH/IHI Quality and Safety Forum alongside team members from the part of the NHS with which I was working as a Patient Leader. Shortly after arrival I was asked hastily to leave the stand as apparently did not have a formal NHS contract. Suddenly my “otherness” my “outsider” status was painfully clear. It was tough. I yearned to be a worker among workers, a friend among friend after such a long time in the wilderness. I had not worked due to illness for 17 years at this point. Trying to find “my” people, I sought out the Patient Panel and was not part of that either as I had not applied to join. I found myself in that no man’s land not at all sure who or what I was. Had I now morphed into a professional and therefore lost my “patienthood” or was I simply a patient trying and failing to be seen as a professional? Once the discomfort subsided I reflected on the fact that, though very uncomfortable, it was exactly where I needed to be.
I prefer to be a bridge builder rather than stranded on the banks. We Bridge-builders occupy the often uncomfortable space between patients/carers/citizens on one side and the demands of the system on the other. Dealing with Leaders for whom the ceding of control to a group of “outsiders” can be particularly challenging. That’s the thing about being a bridge, for people to meet in the middle the bridge must be strong enough to bear the weight. When we do this, it becomes less important whether we were labelled “patient” or “professional” but more that we work collaboratively, and broker trusting relationships to enable both “sides” to meet half way. A strong network will have these bridge builders, people who are able work across traditional boundaries while not losing that which makes us different.
Who are the bridge builders in your organisation who will broker the relationships across boundaries that are needed for it to be a network rather than a club?
Timebanking as a catalyst for Co-production
Timebanking is a useful tool to enable organisations to make traditional patient and public involvement more co-productive by addressing the key core principle of reciprocity.
After many years giving my time for nothing as an active service user I felt at times undervalued as often the only unpaid person present facing an over-riding assumption that the only skills and experience I had were those related to my illness. I was not motivated by material gain but wondered what these assumptions said about my worth.
Here is a very useful summary of the first part of the book from Timebanking New Zealand. The woman who wrote it earned Time Bank credits for her efforts:
There was something about Cahn’s examination of what worth and value can mean that really spoke to me.
Filipe et al describe in the excellent article “The co-production of what? Knowledge, values, and social relations in health care” how Co-production/Timebanking can redefine our often overly rigid understanding of “worth”:
“This (Co-production) may generate new forms of care other than health care ( inclusive relationships, solidarity), values beyond economic value ( equity, justice), and new insights and research practices that are relevant to different disciplines and practices (community participation, patient advocacy, collaborative research)”.
I decided to try see the how the academic theories worked in practice by working on a Timebanking basis at the Holy Cross Centre Trust in Camden where Cahn acted as an adviser. I got paid for every hour of my time in one Time Bank credit. I had a range of activities I could choose from theatre tickets to guitars lessons but I “spent” my credits on accredited training. Being tangibly rewarded for my time restored a sense of worth that the years of illness, unemployment, passivity and largely tokenistic service user involvement had removed. It changed how I viewed myself. Here in my hand at the end of my three-hour shift was visible proof that I still had something to give.
An example of the sort of exercise that help clarify the mindset involved in Time-banking and Co-production. It can be made really interesting by banning anything connected to professional identities:
David Boyle explores this concept further in the following article from the Guardian Healthcare Network:
Timebanking is just one of many ways in which patients/service users can be given a tangible indication of the level at which our contribution is valued. Many of us are unable to accept money or choose not to. My contributions were recognised in the form of genuine opportunities for training and development such as my Improvement Leaders’ Fellowship with CLAHRC North West London and being given a place on one of the NHS Leadership Academy programmes. These were life changing opportunities that enabled me to reconnect with the skills and assets that had become frozen over the long period of my illness and gain new ones.
I wrote more on my personal experience of this in this blog for the NHS Leadership Academy
Our health and social care services cannot afford to allow the insight and other life skills that people using health and social care services possess, to continue to go to waste. The only way forward is genuine collaboration – that powerful bringing together on an equal basis of lived experience and professional expertise. This can be challenging for all concerned. It involves redefining our jobs which may have become part of our very identities, coming out of comfort zones and being prepared to admit that we may at best only have part of the answer.
In Co-production: Manifesto for Growing the Core Economy Cahn warns in the foreword of the consequence of failing to heed this message:
“We will be unable to create the core economy of the future so long as we live in a bifurcated world where all social problems are relegated either to paid professionals or to volunteers whose role is typically restricted to functioning as free labour within the silos of the non-profit world. It will take massive labour of all kinds by all to build the core economy of the future – an economy based on relationships and mutuality, on trust and engagement, on speaking and listening and caring – and above all on authentic respect. We will not get there simply by expanding an entitlement system which apportions public benefits based on negatives and deficiencies: what one lacks, what disability one has, what misfortune one has suffered….Finally, because timebanking and co-production grow out of my own life and work in the civil rights movement, I have to add that hell-raising is a critical part of coproduction and of the labour that it entails and must value. Those with wealth, power, authority and credentials hold those assets as stewards for those who came before and in trust for those yet unborn.”
I echo Cahn’s rallying cry. This is very far from the rather safe world of traditional patient and public involvement so often talked about as Co-production. It can feel messy and risky. But if we are able to take the risk to emerge from our boxes of “patient” or “professional,” and venture into the territory where boundaries are blurred, and both “sides” are prepared to walk in the shoes of the other, then we have the potential to create something radically new. This is not about professionals having to relinquish power in an already chaotic and uncertain climate, but about strengthening the power base so there is more of it to go around.
Edgar Cahn called me a hellraiser when we met. It takes one to know one. Let’s resist the dilution into nothing of Co-production, reclaim the term and dare to become Hellraisers to keep its flame burning.
More on Edgar Cahn’s work:
NESTA Co-production Practitioners’ Network:
Full Article on Bridge Builders:
Blog “Co-production, an inconvenient truth” by Jane McGrath
Filipe A, Renedo A, Marston C (2017) The co-production of what? Knowledge, values, and social relations in health care. PLoS Biol 15(5): e2001403.