What I learnt about disruptive co-creation of the health and care system at Stanford Medicine X

It’s now a week since I returned to England from Stanford Medicine X 2016 and I have had an epiphany. I have seen a compelling picture of the future that Larry Chu, the founder of Medicine X, describes as “disruptive co-creation”.

In my role as an improvement leader in the health and care system in England, I aspire to be a champion of co-production, inclusion and diversity. At Medicine X, I saw co-production played out at a more systematic level than I have ever experienced before. Medicine X is essentially a healthcare technology and design conference but one with a difference. It has an underpinning philosophy of Everyone Included?:

Everyone Included? creates a culture of health in which everyone is trusted and respected for the expertise they bring, where openness and experimentation is the norm, people have personal ownership of health, individual stories have global impact, and the patient voice and choice is a part of all stakeholder decisions

Everyone Included? was recently the topic of a BMJ article. It permeates every aspect of Medicine X. The programme is co-designed by a very diverse group of people (patients and family members, clinicians, teachers, researchers, designers and technologists). The sessions at Medicine X demonstrated that relationships matter at least as much as science, that patients and their families need to have an equal place at the table, co-creating a different future and that patients aren’t just waiting for the system to change but are mobilising to change the system. There were so many outstanding examples in the MedX programme of patients and families co-creating new clinical trials co- designing new care models, setting up campaigns and movements for change, co-producing training and learning and engaging in innovation and entrepreneurship.

The unique role that patient leaders play in Medicine X was reflected in data that Tom Lee of Symplur showed at the start of the conference. The Medicine X story stands in sharp contrast to the reality that patients typically have very little voice at most healthcare conferences.

Picture 1 shows how the patient voice is virtually silent at healthcare conferences and the situation hasn’t improved in the past three years:

Picture 1: median number of patients among top 100 influencers by mentions at healthcare conferences (source: Symplur data)

However, picture 2 shows that the situation at Medicine X is very different. Whereas only 1% of top influencers at the largest healthcare conferences are patients, at Medicine X, 28% of top influencers are patients:

Picture 2: median number of patients among top 100 influencers by mentions in 2015: Medicine X versus the 100 largest conferences  (source: Symplur data)

This data alone demonstrates that we should seek to replicate what Medicine X is doing at other healthcare conferences and in other health and care arenas.

So what about my "epiphany" at Medicine X? I realised how closely what I experienced at Medicine X fits with a framework that Hahrie Han, a researcher from Wellesley College with interests in community organising and social movements, has developed to understand the roles that the most effective civic activists play. She identified three different kinds of activists:

These three kinds of activists have different levels of success when it comes to building power and influence to make change happen. Lone wolves are the least effective because they are individual activists and they don’t create power through people like the other two approaches do. Whilst mobilisers can engage a lot of people and create energy for change, mobilising is still about lots of people taking individual, discrete action with no sustainable infrastructure for change. It is only organisers who build leaders, encourage relationships and create the conditions for ongoing collective action. Hahrie Han says that the most effective civic activists are a combination of mobilisers and organisers. My conclusion is that the same is true in the role of patients and families as co-producers of change in the health and care system.

Reflecting as a leader of change and improvement, I reckon we put patient leaders in the category of “lone wolves” at least 80% of the time. This excerpt from a blog by Anette McKinnon, a Medicine X ePatient scholar from Ontario Canada, sums up the situation powerfully:

 “What I am ranting about is the way in which patients are being streamed into advisory sub committees, the way we are being used as tokens and to help tick off the right box….Where is the attitude that patients are part of the team in healthcare, that we are partners? Why are we always asked to participate inside a pre-determined frame? When will we see co-design of new policies, and ultimately co-production?”

Even in many of our existing “co-production” activities, we, as leaders of the formal health and care system, continue to treat patients and families as lone wolves because we set the frame within which the co-production takes place so tightly. The reality is that we don’t often ask patients “what matters to you?”. Rather, we do all the initial strategic planning and priority setting in isolation so what we actually ask patients is “what matters to you about what matters to us?”.

Medicine X showed me so many compelling examples of patients and families as mobilisers and organisers. I met Stacey Lihn of Sisters by Heart a group of mothers of children with congenital heart defects who are co-designing care systems with cardiac teams from across the USA and are able to show quantified improvements at scale and Joyce Lee of HealthDesignBy.Us which promotes patient-centred participatory design and applies the model of the maker movement to healthcare. I heard Sally Okun from Patientslikeme talk about the Precision Medicine initiative that seeks to mobilise a million people for a new kind of collaborative research powered by patients.

At the heart of what I witnessed at Medicine X was the issue of building  AGENCY  in health and healthcare. Agency is the capacity of individuals to make their own choices and to take action in a given environment. Words that are synonymous with agency include action, activity, effect, influence, power and intervention. Most current health and care transformation efforts globally are built on a premise of increased agency for patients and families. We want patients to take more control of their own health and have more power over decisions about their care.

Much of the current practice in healthcare improvement is agency at an individual level through approaches like patient activation, shared decision-making and self-care. I am not detracting from the importance of these strategies. However, on their own, they also have limitations because, in the absence of a wider mobilising and organising strategy, they can be about singular, isolated patients taking action for their own health. This revolution may end up taking a very long time. Stanford Medicine X has taught me that if we want to create a quantum shift in power, we also have to focus on collective agency.

At Medicine X I saw that collective agency occurs when people act together, united by a common cause, harnessing the power and influence of the group and building mutual trust. It draws on the connective power of social media and online platforms to inspire and enable people to highlight problems and opportunities and find solutions. Collective agency takes us beyond the typical “top down and bottom up” approaches to healthcare improvement, and beyond the lens of “service delivery” through which formal systems leaders often conceive the problems we are trying to solve.  It increases the likelihood of bringing positive disruption into the system for faster change and bigger outcomes.

That means moving beyond the lone wolves strategies of many health and care organisations and supporting and helping develop patient leaders to be mobilisers and organisers. That is the level at which disruptive co-production is most likely to take place. And it’s not just about including and/or engaging patients and families. It’s about working in ways that honour the diverse experiences and skills that people bring and the impact they can make. It is about igniting the collective brilliance of people with health needs and people who work in the system by enabling everyone with an interest in a specific outcome to contribute in a meaningful way.

Stanford Medicine X was a window that enabled me and many other people to see how these new relationships can play out in profound situations of life, health and death. The big challenge (and the big opportunity) is how to make disruptive co-production a way of life for everyone in the health and care system.

Helen Bevan @HelenBevan

PS: This is the second blog I posted on my experience at the Stanford Medicine X conference, 15th to 18th September 2016. The first, on the IDEO design challenge, can be found here.