How participatory cultures in healthcare are transformational
April 12th, 2012

This article is based upon real world issues with the UK health service (but it an organizational problem many healthcare systems have) and the stories are taken from No Straight Lines: making sense of our non-linear world (open access book and participatory reading)

Designing and co-creating the best possible future for the National Health Service

The bitter public battle now being fought over the future of the NHS looks set to continue. Its future shape uncertain, and the mounting resistance that is so visceral is based upon fear, uncertainty and crucially a genuine lack of trust in those that claim to be guiding us to the best possible future the NHS.

The Lancet in January 2011 agreed that the current system stifles innovation and that although vast sums have been invested in the NHS we have not seen the benefit delivered as valuable frontline services. So we need transformation.

But the question is how do we get to that best possible future? How do we create a more sustainable NHS? Here are a couple of thoughts.

Participatory healthcare for chronic disease

Patients Know Best is 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.

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.

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.

Participatory leadership in healthcare

Nova Scotia was facing significant challenges in how it was going to evolve its healthcare system. In 2006 the Government asked 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 specialist management consultants.

The benefits of participatory learning and leadership in healthcare

Patients Know Best and Nova Scotia are stories that are real world – they are serious and they represent two simple ways in which a best possible future for our healthcare service could be delivered, that can cost effectively meet the needs of many millions of people.

They are cost effective because ‘we’, become part of the process, we have co-created it. We begin to build a shared narrative around the people’s NHS. This is entirely different to the ideology and language of markets and privatization.

They are also demonstrative of the agile organization. Agility is related to what Otto Scharmer describes as an evolved geometry that devolves power from hierarchies to evolving networks of relationships, these are organizational models in which people, patients, physicians, clinicians, support services connect with each other in more meaningful ways in which they are all part of the process. So we move from the language of economies of scale to human centered ecologies of scale.

Explicitly, the thing that joins the dots is that Patients Know Best and Nova Scotia are both designed around the needs of humanity. 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.

John Berger wrote, ‘what we see is shaped by what we know’, and what we make is shaped by the language we have available to describe a new reality. If that language is lacking or deficient then so will be the outcome. And that is why Andrew Lansley’s Bill is in such disarray, as his framework for reformation is not based upon the language and literacy of social innovation, participatory cultures and leadership, it is based upon a language that has ultimately done so much damage to us.

What is missing is a literacy that defines a new form of leadership relevant to today’s world: the capacity to collectively shape and create our best possible future, and to release us from the cul-de-sac of our ‘industrial free markets are best’ view.

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