Search our website:

Currently the posts are filtered by: healthcare
Reset this filter to see all posts.

Health and wellbeing

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.



Co-Production Around the World

Co-Production as a new perspective for the Swedish welfare state?

View on Kiruna from the old mine (Luossavaara) to the new mine (Kiirunavaara)


Sweden is known for its universal welfare state, high taxes and strong focus on economic and social equality. Indeed, the path towards the Swedish welfare state model has been characterised by an expanding public sector which has funded and provided professional public services to every Swedish citizen regardless of social class. Can such a model still be financed in a time of austerity? And is it still desirable?  Is public service co-production an alternative to the way public services have been commissioned and delivered in Sweden?

Co-production as a new political agenda in Sweden

The concept of co-production is regarded as new in Sweden, even if we can discern several classical examples of co-production in the Swedish welfare state. The Swedish concept of medskapande perhaps comes closest to co-production and has gained some attention in the public debate. However, with Elinor Ostrom winning the Nobel Prize in Economics in 2009, her academic perspective on co-production may gain more prominence in the future.

One area which has always stood out in the Swedish welfare state is childcare, where co-production is more significant. According to Johan Vamstad between 10-15 percent of child care in Sweden is provided by parent cooperatives which rely strongly on the engagement of parents. Interestingly, this form of co-production goes back a long time. The first parent cooperatives were developed in the 1970s to offer a pedagogical alternative to the childcare provided by local councils. They increased significantly in numbers after a highly controversial political reform in 1985 which allowed the cooperatives to receive public funding. Indeed, it was the well-known Prime Minister Olof Palme who famously warned against non-public childcare as making 'profits from children' and creating 'Kentucky Fried Children'. The reason why parent cooperatives were allowed public funding was because the public sector did not manage to meet the demand for childcare services at the time. Co-production was therefore introduced for financial reasons, even if better education outcomes were stipulated as the main reason in the government's proposals.

However, childcare is not the only service sector using a co-production approach in Sweden. The region of Jönköping together with the municipality of Eksjö and its neighbouring municipalities redesigned the regional health care system between 1997/1999 based on design thinking. Extensive customer journey mapping of patient pathways to recovery was complemented by a culture change program based on 'patient charters' and quality circles based on trained coaches. This so-called 'Esther approach' has already received wide-spread interest in Scotland and Wales. Involving users, particularly the elderly, has become a more and more dominant and permanent element in this concept. At such events, professionals working in elderly care in municipalities and health care employees are able to learn from users telling stories about their experiences and their needs.


Another internationally widely regarded co-production approach is the new value system and patient-driven health model introduced by the consultant Jörgen Tholstrup in the gastro-enterology unit in the Highland Hospital in South Sweden. The changes introduced by Jörgen in 2001 resulted in a new relationship model between patients and the healthcare system: The traditional hierarchical relationship between consultant and patient was replaced by a network model where the team and the patients are partners and where the patients supported by their social network are responsible for their own health.

In local diabetic associations members co-produce their own health care together in various parts of the country. They illustrate a classical example of co-production based on close cooperation with public health authorities. Similarly, supervised patient self-dialysis at the Ryhovs Hospital in Jönköping provides another clear example of organised co-production in Swedish health care. The region of Norrbotten in northern Sweden covers a large sparsely populated area. The county council, responsible for health care has introduced telemedicine. Patients are both given equipment to do their own medical tests and IT equipment to be able to send the results to the doctor. They do part of the job themselves and they can minimize visits to the GP, often quite a long journey. Doctors testify that patients feel secure and that they tend to stick better than usual to the agreements they make at the outset of the treatment. Even quite old patients who have never before used a computer manage surprisingly well. This project has not yet been evaluated but is included in an ongoing large-scale EU study. Sweden also boasts a variety of self-help groups which focus on physical, psychological or social problems. However, their collaboration with public authorities varies greatly, ranging from close to distant. Many of them question the narrow scope of established professional models, and the Swedish Alcoholics Anonymous provides a good example of this.

Last but not least, the City of Umea received the European Public Sector Award in 2007 for its co-production approach in cultural services for and with children. This meant setting up the new cultural department Kulturverket in the local council which works closely with local schools to facilitate learning through creative cultural approaches. All Kulturverket projects are based on the co-production approach of 'Kids tell the pros what to do'. The ideas, thoughts and creative work of children are developed together with older pupils, students and 'the professionals' (practising artists and cultural organisations). The children and young people are the creators, and take an active part at professional exhibitions, shows and concerts but it is grown-ups with their experience, knowledge and resources who actually make it happen by implementing the ideas of the children and young people. At present, Kulturverket is working with children and artists on a number of large-scale co-production projects such as Fair Opera, Fair Ground and Fair Game which will be performed in 2014 when Umea will be the European Capital of Culture.   

© Frida Hammar

Strong professional ethos as a key barrier to co-production

However, public service co-production still remains a rather rare plant in the Swedish public sector. It is often limited by the strong professional ethos and authority of public service providers.  The common view has been that service quality is guaranteed by the training and expertise of professionals. In recent years, though, the National Board of Health and Welfare has launched the concept of evidence-based practice within welfare services. A key element of this way of looking at implementation of social welfare services is that the knowledge of users is an important ingredient, along with professional knowledge and available research. Although there are probably still some social workers who think 'we are the ones who know what is best for the family', there are valuable examples in some municipalities  of a very different approach, valuing the experiential knowledge of users. In some municipalities user boards have been established. The users are people who need support to be able to cope with their lives. The user boards have led, for example, to a rewording of application forms and to radical changes in the web pages of the municipalities.

The strong professional ethos is not the only factor that might be an obstacle when trying to promote co-production in the Swedish public sector. The longstanding strong pact between labour unions and public sector employers can mean resistance to giving power to a third party, such as users or their organisations.

Nevertheless, the research by Johan Vamstad* shows that twenty-five years of co-producing childcare have resulted in better service quality, both from a user/parent and staff perspective.

Development of co-production at local level

While Swedish policy is far from questioning the welfare state, the public sector is changing. There has traditionally been little competition between public service providers but freedom of choice has recently become a political objective in the Swedish welfare state. Both in health care and within elderly care, private providers have become more common, particularly in the urban areas around the three biggest cities.  There are also initiatives such as Famna (The Swedish Association for Non-Profit Health and Social Services) aiming to develop the capacity of third sector organisations to deliver social services. Representatives of the Swedish Association of Local Authorities and Regions (SKL) have visited the UK to learn about co-production approaches and receive briefings from Governance International and leading co-production champions. This was part of preparations for SKL before the board during 2012 decided that co-production should be one of the priority issues during 2013. Quite a few other actors also have arranged conferences and initiated studies, indicating that co-production is now becoming an issue in Sweden. The National Board of Health and Welfare has recently released some guidelines for user involvement in the social area.

In November 2012 Ersta-Sköndal University College, together with the Swedish Association of Local Authorities and Regions, arranged a one day workshop in Stockholm under the heading 'From Passive Recipients to Active Co-Producers' (Från passiva mottagare till aktiva medskapare) to promote courses for social workers and health care workers about activating clients and patients as co-producers of public services. In 2013 the Swedish Association of Local Authorities and Regions decided to elevate co-production or 'medskapande' to a 'priority area' in its own developmental work under the title 'Users and patients as active co-creators'. This will involve documenting good examples and undertaking some studies about the impact of co-production when it is more systematically introduced. In the autumn 2013, conferences are planned with politicians and managers in municipalities and county councils as the main attendants.

*Johan Vamstad (2012): Co-Production and Service Quality: A New Perspective for the Swedish Welfare State, in: New Public Governance, the Third Sector and Co-Production (edited by Victor Pestoff, Taco Brandsen and Bram Verschuere), pp. 297-316.

This blog was written by Victor Pestoff, Professor Emeritus in Political Science, Ersta-Sköndal University College, and joint editor of the book 'New Public Governance, the Third Sector and Co-Production'. 


Copyright © Governance International ®, 2010 - 2014. All rights reserved
privacy statement | legal disclaimer | contact us