Holistic public services for severely ill children

Alvorlig Sykt Barn – barn og unge med sammensatte behov (Severely ill child – children and adolescents with complex needs) is one of seven life events defined in the national Norwegian digitalization strategy, where the development of seamless services is prioritized. The Norwegian Directorate of Health is coordinating the development of holistic and seamless public services for children with complex needs and their families. We have helped them identify why challenges occur, the relation between them and explored new ways of working to find solutions.

In the project, we have worked to understand how, why and when challenges appear, mapping out all the layers of the system; from the direct interaction between families and service providers all the way up to legislation, financing models, organization of the services and the collaboration and coordination between sector at all levels. The whole spectrum of public administration and service delivery has been used as design material to solve this wicked problem.

A need for seamless and tailored support

Families and their children with complex care needs – often a combination of physical, psychological, and cognitive –experience significant difficulties receiving adequate support. Lack of coordination between sectors and public services providers results in families spending an average of 19 hours a week coordinating the services themselves. The project 'Alvorlig sykt barn' aims to understand how and where problems occur and how they relate to each other so that we can find a way to offer families seamless, tailored, and reliable support across sectors.

" The public sector delivers some of the most important services in our lives. Many dedicated and skilled public servants work hard to help people, so it was with great humility that we approached this task."

Sigrun Vik, Head of Health, EGGS Design

Using experimentation as an innovation tool

Innovation in the public sector is complex, with numerous stakeholders at all levels of decision-making in public administration and families in vulnerable situations. We approached the problem through experimentation to get past the initial threshold of fear of making mistakes. By designing and staging different scenarios, we could use experimentation as a method to learn and gather new and deeper insights about the challenges. The staged scenarios offered a safe environment where we removed the barriers – real or imagined – of processes, protocols, and silos between departments; we could test different scenarios and solutions. You can read more about the experiments here.

In the experimentation, we could take a step further – from the gigamaps to the real world to test a new way of collaboration across sectors and departments. This allowed us to test different interventions safely and quickly.

"A lot of it was about daring to start somewhere. To dare to do things differently. The experiments gave us new tools that we have started using – they work really well!"

Sophie Bouffard, Flekkefjord Municipality

45 concrete suggestions

By mapping the extensive knowledge that the directorates already possess on the existing problems and working co-creatively with real users we could summarise, visualize and prioritise them. This makes the issues more clear and comprehensible. This knowledge, combined with the experimental approach of testing scenarios and solutions for collaboration, allowed us to identify no less than 45 concrete suggestions for projects that together can help create seamless and adequate support for the children and their families. Having this overview will facilitate staying on track when working on individual projects. The overview provides a structure that enables tracking and measuring results and facilitates the correct prioritizations of interventions. It's crucial to work on several parallel interventions to keep the focus where it should be – on the families.

The way forward

The Norwegian Directorate of Health is now carrying the Alvorlig Sykt Barn project forward, which is planned to run over several years. They have started with the first of the 45 suggested interventions –"Rett på" This sub-project aims to make information about children and young's rights more easily accessible to them. The Directorate of Health received 57 million NOK in June 2022, to improve the access to information for the families and their children and continue the effort within the life event.