Change it all, start small

A 90 minute Case Study by:

Winfried Tilanus

tilanus.com

Anne Marsman

Maastricht University

About this Case Study

In 2014 a small group of Dutch experts started to collaborate to develop a vision for mental healthcare and to realise that vision. In their view, clients should be much more in control about their own care process. They wanted to explore whether the mental healthcare system was suffering from a system failure and whether the possibilities of e-health were largely unused. This resulted in a cluster of projects and collaborations trying to reform the mental healthcare system in the Netherlands.

At the core of the vision is the idea that you can't help people if you don't take their own experiences as starting point. Much of mental healthcare is designed to help the professionals and give the professionals certainty, but it tends to lose sight of the patient. This tendency is already present in our definition of health: the absence of illnessĀ. When using a positive definition of health - the ability to have a meaningful life - the focus of care changes dramatically. It is no longer a process where experts are fixing broken patients, but it becomes a process of supporting people to find ways of dealing with their circumstances. This shift in vision also appreciates expertise differently: being able to understand what somebody experiences and being able to support somebody in his or her search for a meaningful life becomes key.

Healthcare is currently organised around professionals. The system is unable to make use of other things that can help in achieving a meaningful life. The funding in the Netherlands is based on treatments - and treatments are justified by a diagnosis. The Netherlands has the highest percentage of people diagnosed with mental health problems in Europe.

The cost of mental healthcare is growing faster than our ability to finance it. At current rates, it will be impossible to finance our mental healthcare in 5 to 10 years. The wrong care is also being delivered: many people who could have been helped with light care had to wait until their problems escalated to the point where they had to be taken into a clinic, and many others with complex problems who need intensive care can't find a place. The amount of beds is reduced without investing in lighter forms of care. We need other ways of organising and financing the care to keep it sustainable.

The e-health systems in the Netherlands are often a copy of face to face treatments. They are about as (in)effective as their face to face counterparts. But e-health has the potential to radically change the care process: it makes treatment independent of place and time. It vastly increases the possibility to create treatments that use alternatives to talking about your problems. An example is a word game for people that are hearing voices: by occupying the part of the brain that is involved in creating those voices, they can be suppressed. The possibility of playing this game on a smartphone whenever or wherever the voices are being heard can vastly improve someone's chances of having a meaningful life.

E-health also has the potential to support complex care networks while delivering more personalised care. And it can enable users to control their own care process and their own data. But this vast potential of e-health is not easy to achieve: it needs a radical change in care processes and systems that are carefully designed to capitalise on this potential.

Problems with mental healthcare are complex societal issues. There are many parties involved in the mental healthcare system and none of them have the power to change the system alone. The system as a whole needs to transition to new ways of working. This can only be done by inspiring and influencing everybody involved and by running local experiments to show what's possible and to learn from them.

Inspiring means abstaining from control and ownership. So it's important that these projects are open, free to use and free to adapt: open standards over proprietary standards and decentralised over centralised. Open should not mean losing focus: the aim of the project is to take the client as the starting point - he or she has to have as much control as possible over their own care process and data. But the development of architectures and software implies many assumptions about clients and their position in the system. So a condition for success is client involvement right from the start.

The projects have a natural cycle of coalition forming, development, reflection and securing new funding. With each cycle the coalition grows, the projects become more diverse and more people get involved. The project is now about to enter its third cycle. In the first cycle we were mainly developing our vision and forming the first coalitions. That cycle ended with a manifest that was signed by many stakeholders. In the second cycle we got funding to develop our ideas further and build a proof of concept for the infrastructure. In that phase the coalition grew further.

We are now in the process of securing funding from the Dutch ministry of healthcare to develop national infrastructures, both a technical infrastructure and an infrastructure for collaboration. At the same time, 3 local projects with the explicit aim to provide feedback for the national infrastructure are starting up. They aim to realise the vision in one local area and provide the feedback that is needed to further develop. We try to stay in close contact with a multitude of other projects that share a similar vision. In this round, we have developed client journeys to explain our vision and we have described the way we want to work and collaborate.

In this workshop we will start with the client journeys, to show what kind of care processes we have in mind. Then we'll tell you a little about the history of the project and its current state. We'll explain the technical choices we have made and share some reflections on the project and on client involvement in it: how can we take care of real co-creation? There will be plenty of time for questions and discussion. Tell us your reactions, your thoughts and share your own experiences!

About the Speakers

Winfried Tilanus

Winfried Tilanus is an independent privacy consultant specialising in e-health. He is involved in several projects that working to reform Dutch mental healthcare. He maintains HelpIM, an open source and open standard chat system for care. His first experiences with e-health were 20 years ago, where he was part of the team that created the online communication presence of Sensoor, the Dutch equivalent of the Samaritans.

Winfried graduated in humanistic studies, which is a multidisciplinary science focusing on issues relating to world views, meanings of life and the pursuit of a humane society, a study that draws on philosophy, psychology, pedagogics, sociology and religious studies. Before that he studied applied physics for several years. In the summer you can find him, together with his 2 daughters and wife, in the Alps climbing rock-walls.

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Anne Marsman

Anne Marsman is involved with mental health care on many different levels. She struggled with eating disorders and depression for many years and has been in treatment multiple times. She knows what it's like to be a patient, and what it takes to finally recover. After finishing her studies in mental health sciences, she took on a PhD position researching the impact of childhood trauma on stress and pain reactivity.

At the same time in 2015, she got involved with the creation of PsychoseNet.nl: a multi professional online platform around psychosis susceptibility. Besides good information on psychosis, PsychoseNet offers online consultation and most importantly: hope. Anne has been chief editor for the last 2 years and has seen the online community grow significantly. Last but not least, several nights a month she works as a psychologist for the national suicide prevention lifeline.

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