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From repression to co-production with citizens: Why we need behaviour change in healthcare

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 16th 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?

 

We have to accept that the behavioural rules underlying the traditional system are unacceptable and out of line with citizens’ expectations in the 20th century.  So we need to redesign the system. To do this we will have to change the way we think about healthcare. In particular, we need to develop an alternative approach, harnessing the skills and capabilities of human beings instead of continuing to use repressive approaches. We have to incorporate principles of co-design and co-production into how we think and interact – with staff, clients and their families, friends and networks.

This is how I started to transform my ward at in the Highland Hospital in Eksjö hospital in 2001 as described in the Governance International case study.

One important driver of co-productive forms of behavior in healthcare may be greater transparency. Since we have moved to giving patients a much greater understanding of their own conditions, and how to interpret all of the information which we have on how their condition is progressing, we have had great improvements in our results. New ways of reinforcing this are now becoming available. For example, in the US and Sweden the rules are now changing so that patients have internet access to their own health record in order to help patients make proper choices. In the future, patients may even have the opportunity to add their own notes to health records which will open new possibilities.

Fundamentally this is a political issue, the basic question is how to let individuals take control of their own lives in a way that is in accordance with the 20th century.

 

The author:

Jörgen Tholstrup is the Chief Medical Officer  at the Highland District County Hospital in Eksjö, Sweden. Until December 2013 he was the head of the gastroenterology unit in that hospital.

Email: jorgen.tolstrup.rasmussen@lj.se

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1. October 2013

Service Co-Design

Caketember in Lambeth: Co-designing quick wins with staff

Everyone thinks innovation is great, everyone thinks working with the public is great. But how do you actually get this to happen? My colleague Tom Hoy has shown how it’s possible. Check out the next Made in Lambeth weekend make-a-thon to see how he’s helping create an alliance against violence, stopping pay day loans, and creating a brand identity for a local Brixton paper. Made in Lambeth now gets people from across the local community contributing and doing stuff. Most of the work is done in an amazing 48 hours.

But what about creating change within the council? Recent research in the sector has shown that the majority of council officers think innovation is one of the answers, but feel pace is far too slow.

So what can you do? Do you need to spend millions on branding, fancy buildings, and lots of experts? Do you need to launch more initiatives? I’m sure that could help. However, in Lambeth, we’ve gone back to basics. We’ve shared our ideas about what really seems to create a buzz on the ground. We’ve look at what captures our imaginations. Some of it is rational, some of it unexpected.

My colleagues Giles Gibson and Sue Sheehan have been baking delicious cakes. Sue is famous for her lemon drizzle, and Giles for his chocolate brownies. I have been pouring the tea. We find that it’s enough to get people talking and coming up with ideas and plans. We’ve also found that many of our colleagues love baking, and we have been able to capitalise on this tradition of sharing.

We decided the most important thing was talking to people, listening to their ideas, and giving them practical support. Money was rarely a barrier to coming up with ideas. Instead of using external designers, we found an artist amongst our council colleagues, and we designed our own promotional materials and worksheets. We produced all of these within seven days, from start to finish. Get in touch if you want to see what we came up with.

We have a letter from our Chief Executive Derrick Anderson, supporting each team to see what they can do over 30 days over the month of October. The idea is to help people try something new. We know that there is too little risk taking, too little experimentation and sometimes people need explicit support to try something new. We now have a dozen teams, with ideas ranging from re-launching an unused kitchen in the town hall, to involving residents in carrying out environmental inspections in their neighbourhoods, to growing and sharing vegetables in GP surgeries. We are supporting them in overcoming any barriers they encounter. At the same time, we are developing an in-house school of innovation, based on creating networks within the organisation, and working with local residents.

But we are not spending money on new buildings, or fancy prizes. We are working on the basis that people enjoy collaborating to solve challenges, and make life better. We find a little piece of cake and a cup of tea can go a long way.

This blog has been written by Governance International Associate Ajay Khandelwal, email: Ajay.Khandelwal@govint.org

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