Designing for transformation in healthcare: How are you?

A few years ago I went to see my friend Andy Middleton who lives in St. Davids at the very north-western tip of Wales. We decided to go for a 12 mile hike along a costal path. A third of the way through he we arrived at a village now abandoned. Andy pointed to it from the cliff top, ‘you know my father was the district GP – he used to come here to visit his patients. One of the things he used to do was walk into the kitchen sit down at the table take his patients hands into his own to feel their pulse, look into their eyes and ask them how they were. The reason he did this was yes to feel their pulse but it was really about human contact. For some of his elder patients its all the human contact they got’.
I have no idea why Andy brought this up other than we were discussing society, connectedness, designing for humanity – but it got me thinking as I write this.
If I go to my GP surgery as much as I like all the GP’s they are not holding my hands looking into my eyes and saying, ‘so Alan – how are you?’
So how are we? Today, around the world we are confronted with complex ‘I can’t sleep at night’ healthcare challenges. Some are to do with how healthcare is run as an economy as in the US – as in how healthcare makes its money, how it is organised, and how its’ very DNA brings about systemic inequality on a tragic scale. Or in the west generally, a dysfunctional system geared to acute healthcare yet the vast majority of us suffer from chronic health problems, then add in issues over of patient sovereignty and the inefficacy of patient empowerment including control of their data and the ability to better manage their own healthcare. The current consensus is that healthcare is something done to you rather than something you participate in, resulting in a diagnostic passive pill popping culture. The rise of superbugs C.difficile and MRSA in hospitals are the warning lights of system failure, and in the UK patients in hospitals are often provided food of such low nutritional value one can only describe it as a moral failure of epic proportions. In Norway a report describes that if healthcare continues to be run as it is by 2030 one in every second young person will be working in the healthcare system.
And whilst this is all going on populations in the west are busy consuming, well really ‘gobbling’ industrial scale quantities of salt, sugar, and fats. The output – a morbidly obese nation(s) who overwhelm healthcare systems not designed for industrial scale self-inflicted chronic disease stimulated by a mass consumer engine that JUST WANTS US TO EAT MORE, and in which we are so unhappy – just ask Bridget Jones. With the accompanying problems of diabetes, high cholesterol, heart and organ failure, and then we expect our healthcare system to help relieve us from our dysfunctional lifestyles. Oh and by the way, the most prescribed drug in the world is for depression – this is all unsustainable.

The challenge of getting from here to there

One of the big challenges of creating anything new is the process of transition from one system from another – however were we to suspend the voices of; fear, cynicism and prejudice for a moment how might we design a more human centric healthcare system?
The first step we need to take is backwards – to see health from a world-view perspective, to think about multiple outcomes that could be achieved by the seeing health as a system. So how might we reduce the stress on the health system?
Lets take two examples.

System design challenges in chronic health

Sadly many of us suffer from chronic disease or even degenerative chronic disease and our health care system is not designed to manage this as well as it should. Here we get into some very nitty gritty issues, about systems design in healthcare – the movement of patients from the GP surgery to specialist care based upon the ability to properly listen and diagnose because of time constraints, patient sovereignty, patient data, patient empowerment, which impacts on the daily unnecessary overloading of hospital waiting rooms.  In fact we have to ask this question - How do we create a service to better manage people’s chronic health care? Reducing wrong diagnosis, over prescription of drugs, clogging up hospitals and specialist time?

Participatory learning  and diagnostics in healthcare

In No Straight Lines we prove that participatory learning cultures deliver exponential benefits in multiple ways – so by bringing patients and clinicians together as peers with knowledge to exchange, to mutually learn from each other, mutually sharing diagnostic decisions, the process of learning about chronic conditions becomes a virtuous circle of learning and cutting edge diagnostic capability that is inclusive as a default setting. This approach offers not only a lightweight solution but one that is more importantly, cost-effective, agile and sustainable.
Patients Know Best is such a platform, that enables patients and clinicians to engage in individual and collective diagnostic practice, that allows for patient sovereignty and patient empowerment (where patient data sits at the very epicenter) and for clinicians to provide more accurate and dynamic healthcare assessment and advice. Patients can interact in full confidence with the clinical team online, uploading information about their medical history, patients can also read and interact with other clinical information inputs. This means patients are empowered, they are engaged in the process. Appointments can be made online within 24 hours – everyone has full access to all relevant data, which has proven significant benefits for everyone involved. Clinicians now have the right information with the right time to consult / reflect and properly advise. They can discuss with their patients and decide together next best steps.
Which means the how are you? question can truly be put back into the consultative process.

In this process everyone learns with deep knowledge translating into meaningful action. The insight is that patients know a great deal, they are curators of their personal histories, and all to a lesser or greater degree possess uncommon combinations of common conditions in unique personal circumstances. Clinicians can them combine that unique knowledge with their own knowledge blending together unique and relevant programmes for chronic disease care.
Today Patients Know Best works with Great Ormond Street hospital for children, University College London, Imperial College London, the National Heart and Lung Institute, Torbay Hospital, plus all Thalidomide patients are engaged, encouraged by their charity, and many rare conditions are directed to the platform by leading charities.
In the case of Parkinson’s disease, they have realised that the dynamic flows of information formulated by case histories and discussion becomes the most effective way to conduct ongoing research in the best and most ethical way, as patients are empowered to freely provide their data. In fact founder of Patients Know Best Mohammad Al-Ubaydli says it is not only significantly cheaper but a greater degree of comprehensive accuracy is achieved in one to two orders of magnitude.
As I argue in No Straight Lines, better, much better does not necessarily cost the earth.

Participatory leadership in healthcare

The region of Nova Scotia was facing significant challenges in how it was going to evolve its healthcare system. In 2006 the Government received a report that contained 21 recommendations, the first asking Nova Scotia’s public health practitioners, to ‘articulate and be guided by a collective vision for the public health system.’ This is a complex challenge, and how does one go about articulating a collective vision?
Large-scale organisational change of the healthcare system that is happening in Nova Scotia, is being enabled through a process described as ‘Participatory Leadership’, whereby it is the participation of the people that are the true actors (nurses, clinicians, patients, etc.) within that healthcare system that are being hosted (guided) into co-designing, and co-creating how they are going to find the answers to their difficult and challenging issues.

In December 2008, a group of practitioners and partners in public health from across the province took on this challenge. They initiated a search to find a process that would bring people together to seek new solutions for the common good. They also knew the process would have to take into account the complexity of public health. And they also felt that any attempt to address the current challenges of public health demands the collective intelligence of all stakeholders. They sought a process that would launch Nova Scotia into a new beginning, an approach that would foster leadership and innovation.
The real insight was that the answer to such a complex problem lay in the minds of the many, that the way forward was held collectively in all the stakeholders that worked in the current system – not in the PowerPoint charts of highly paid management consultants. The question was how to harness that knowledge, gather it together and turn it into action?
Tim Merry, who specialises in participatory leadership took an appointed leadership team which was representative of the health system on a retreat. Through exploring their purpose, and understanding the scale of what they had to achieve the realisation was they could not exclusively lead that change – they understood they had to empower a much wider group of people. From the 60 people identified as the core group, 25 committed to becoming practitioners of participatory leadership. These 25 people were then designing their engagement with larger stakeholder groups, notably an event with 250 people in a room and 650 people online. By using a variety of social technologies, the group was enabled to release its knowledge and move towards a consensus on particular issues. Through this process there was a significant shift in the consciousness, a collective awareness and worldview shift of understanding how to create the new.

The benefits of participatory learning and leadership

Patients Know Best and the Nova Scotia stories are real world – they are serious and they large scale in that they address the needs of many millions of people. They are also to my mind common sense yet it seems for institutions designed to run on industrial models of efficiency – highly unorthodox.
The thing that joins the dots for me is that they are both designed around the needs of humanity – and what makes us tick as human beings – these are component parts of what I call the Human-OS (operating system).

• Respect of the individual
• Collective identity
• Autonomy
• Trust and authenticity
• Empowerment
• Freedom
• Mutualism
• Diversity
• Beauty

These are a wonderful set of design principles. Designing for meaningful social interaction as a default setting is very powerful, and there is an ancient wisdom which for some reason in the last two centuries – we have sadly overlooked by putting our faith in the black briefcase brigade who have imposed upon us root and branch a tyranny of numbers, combined with our love affair with all things ‘machine like’. But Kevin Kelly argues that the ‘drift towards mutualism is moving towards an old dream: to maximise both individual autonomy and the power of people working together’. And its is time for large institutions that control so much of our lives awaken from their slumbers.
Participatory learning and leadership are both constructed from the understanding that seeking change for the common good calls for involvement, collective intelligence and co-creation to discover and illuminate new solutions and wise actions. As I like to say, people embrace what they create.