What’s the mission of health care?

I’ve been working as a physician and gastroenterologist both in Denmark and Sweden for more than 30 years. Over time, I’ve become more and more puzzled about our healthcare system and how otherwise responsible human beings can tolerate the way that common behaviourial rules are suspended when you access healthcare.

In my role I am supposed to order people named ”patients” to behave the way that I or the ”science” believe is the right way to behave. At the same time, most medical practitioners know that their patients will not in fact behave the way recommended. Most studies on “compliance” with recommended treatment show that only 40-50% of patients actually follow therapy recommendations (WHO, 2003). This behaviour is most often a result of their conscious choice and does not arise from stupidity or ignorance. This mismatch is remarkable and the result is devastating to health as more than 50% of patients will be untreated for treatable or preventable diseases.

So, how did we get into this paradoxical situation?

To understand the modern healthcare system and its rules of behaviour, it is necessary to look back in time and try to understand how and why the system has developed. The healthcare system reflects society and is the result of the outlook and the values of citizens. From the beginning of the 16^th century, the institutionalisation of health care started in monasteries. Naturally, the rules of behaviour (i.e. obedience and silence) were in accordance to monastic rules. The history of silence, and how we as humans can use the expectation of silence as a tool through which to rule over others, is fascinating. The monasteries aimed at helping people in need - but to get help you were expected to conform to the rules of the organisation.

In the early industrial period, and continuing into the post-world-war era, there was a widespread Western European political vision of the perfect society, in which blessed citizens would live happy and productive lives and where the state would look after all citizens. As a result of industrialization and urbanization, individuals who were not productive or who were a danger to public health (e.g. those suffering from tuberculosis or other infectious diseases or psychiatric conditions) were isolated in hospitals or sanatoria, which was a generally accepted approach. In Sweden this idealized state was named  ”Folkhemmet” (”the people's home”) but the fundamental ideas and dreams were quite uniform throughout Western Europe.  Moreover, there was a belief that the State would help vulnerable groups by creating special enclaves designed to meet their specific needs.

The organisational models of the healthcare systems evolved by inspiration from the most advanced industrial model of the between-the-wars era, namely the car industry in Detroit. Therefore, healthcare was organized in departments and special units in order to focus upon production  outputs instead of supporting people. The idea that the employees of the healthcare system should and could dictate how “patients” should behave is probably a consequence of the roles and rules arising from history, reinforced by the influence of an industry handling production outputs and seeking very hard to standardize. The term “patient” is revealing, as a problematic and stigmatizing construction. It is not connected to “patience” (although often you do need to be patient to put up with the wait for healthcare). It actually comes from the Greek word ”pathos” - ”to suffer” – which marks the people concerned as different from “us”, making a repressive approach more possible.

This first post-war era ended when politicians such as the UK’s Prime Minister Margaret Thatcher recognized that this vision of an ”idealised” society went beyond the bounds of possibility and that, even if it could be achieved, this would only be at the price of an intolerable repressiveness towards individuals. What politicians like Thatcher realized (I believe) is that society actually is a conglomeration of individuals. This led inevitably to marketing the ideas of individualisation and personalisation.

However, this led to many health care workers getting stuck in an antiquated system with an extremely conservative structure. The reason why it has been so hard to change is difficult to understand. However, I think that one of the key reasons is that it is a very hierarchical system and that people at the top of the system are comfortable with it, so they do not have much motivation to change. Furthermore, it is becoming increasingly obvious that modern public management systems are focusing on processes instead of results, which preserves the current system.

How can we change healthcare towards a more human system?

Learning from a bike crash in Belgium

I recently travelled to Belgium for a cycling weekend.  I was showing off by riding over some cobbles when I crashed.  Luckily, one of my friends was carrying a portable medical kit, and promptly put on some latex gloves, cleansed my wounds, and administered industrial quantities of pain killers.

I was promptly re-installed on my bicycle, until I decided to call it a day and managed to find a local train station.  Just as I was about to board the train to Brussels a local handyman offered me a lift to the local Accident and Emergency Department. I was pleasantly surprised to be seen after a few minutes.

I was then bandaged up by nurse and doctor, and given a tetanus injection.  The only problem was that my cycling kit was splattered in blood and sweat, and I didn’t have any spare clothes with me.  It was a Sunday in rural Belgium and all the shops were shut.  I used my powers of persuasion and managed to leave wearing a crisp white nurse’s outfit.  Over the last few years I have spent a lot of time thinking about the role of patients in health care innovation, but this wasn’t exactly what I had in mind!

My recovery in the UK

In 2012, I had predicted that many of us would become much more active in our managing our own health care.  I argued that many people would seek out knowledge and expertise from their peers, and online, as well as consulting their doctor.  Well, this crash gave me the chance to put my ideas into practice. 

When I returned home, I sought advice from internet forums and my cycling friends about the best way to treat “road rash”, as we cyclists call abrasions caused by hitting the road.  But in the end, I decided I need help from the experts, and I went to a local “NHS walk-in centre.”  My walk-in centre in Peckham, South London was lot busier than rural Belgium. It would be more accurate to call it a “walk in and sit down for a while” centre, but once I was seen, the nurse who saw me gave me her full care and attention as she changed my dressing, and we shared some stories about our lives, in the fifteen minutes we spent together. 

The help of this nurse, who I saw every few days after this, was crucial in aiding my recovery.  This reminded me of how important it is that clinical staff and patients work together to achieve real outcomes together. There is a real risk that this human relationship, which requires compassion and genuine empathy, is often neglected in modern health systems and innovations. Indeed, Darian Leader has uncovered evidence that the majority patients visit their GP due to psychological distress, rather than for any medical reason.    

Need for a new form of collaboration between patients and clinicians

Nevertheless, the interaction of the patient and clinicians is an area that is ripe for change.  Genuine co-production between clinicians and patients can provide opportunities for better outcomes, experiences and improved efficiency.

 A number of organisations and individuals have been grappling with the question of how patients and clinicians need to work together.  The King’s Fund has argued that the UK needs to unleash a wave of innovation to find new ways to relate to patients in managing their health care conditions. The blogs from patients and experts on Time to Think Differently make the point that clinicians need to find out what patients want, and show why patients need to take more responsibility for their own care.

Often, this can be achieved through very small changes in conversational approach.  For instance, a London based GP reports that she is much more likely to start with “What are we working on today?” rather than “How are you today?”  Her experience was that the result of this shift is that patients are much more thoughtful about their own role in managing their long-term condition. The Health Foundation’s Co-creating Health Programme, has provided clinicians support to rethink about they work with patients with long-term conditions.  A key finding has been that patients respond constructively to jointly set agendas around how best to manage their care. 

Over the last few years I have been talking to clinicians, commissioners and patients around the country about how they can work together more closely as part of the NESTA People Powered Health Programme.  We set out with the idea that co-production was a marginal approach in health care, but we wanted to find out if it could produce real results if it was scaled up.

We need to test and try out creative new approaches

We worked with Professor Chris Drinkwater and GP Dr Guy Pilkington to support doctors to provide “social prescriptions” – linking patients to local activities to give them a sense of purpose and meaning.  We talked to commissioning manager Nick Dixon about how to help adults move out of inpatient psychiatric care and find support from peers who were in recovery themselves.  We worked with colleagues in Leeds to think about how to create multi-disciplinary teams that helped people with many long-term conditions.  We listened to clinicians and service users about how to use group consultations for individuals experiencing chronic pain.  We worked with a primary care centre in Earl’s Court to think about how to get patients to benefit from nurse coaches, and join a time bank to support other patients. My overall experience was that whilst there are many powerful political and professional barriers to giving patients a greater role, there are also interested clinicians and commissioners who are willing to try new ideas and develop new approaches. 

One such co-production champion is Paul Ballard, Deputy Director of Public Health of NHS Tayside. He has been heavily involved in the drive to embed co-production within all areas of work, including the design and implementation of a new Health Equity Strategy. This will imply a much stronger focus on asset-based approaches and behaviour change: As Paul states, “… during this process I have extensively used the Co-production Star which has proved to be an excellent resource to support our co-production work”.

Co-production offers a financial solution

Not only is there a moral case for co-production, there is also a financial case.  If we were to reshape the health service, so that it had a whole range of support for patient groups, peer to peer support, alternatives to medical care, new forms of medical consultation, and other co-produced forms of health and well-being, we could realise savings of at least £4.4 billion or 7% of the NHS budget.  This doesn’t always require the most expensive medicines, equipment or buildings. But it does require the public and professionals to show the will to re-think and re-imagine what the future of health care looks like. 

If you are interested in exploring how to think creatively about how to bring together clinicians and patients to co-produce healthier outcomes check out our co-production case studies and do get in touch.