Increasing quality of life for people with chronic disease
Setting up a multi-year influencing program for systemic change
More than half of the Dutch population has one or more chronic diseases (10 million people in 2020). These people rate their quality of life significantly lower than healthy people. The Samenwerkende Gezondheidsfondsen - SGF (Association of Cooperative Health Foundations) have decided to design a strategy to increase the quality of life of people with a chronic condition or caregiving role for the long term (2040).
SGF's key premise is that health is not an individual responsibility, but a responsibility of us all. A positive movement is needed, from self-reliance to co-reliance. When people with a chronic condition and caregivers experience more support from their wider social environment, this will allow them to take good care of each other. This is what SGF’s long term (2040) Kwaliteit van Leven project (Quality of Life Programme) is all about.
Project Overview
The initial exploration phases revealed that chronically ill people participate less inmany aspects of live. They participate in work less often (50 % of people with a chronic condition works in comparison with 80% of people without a chronic condition). Partners and family members of people with a chronic condition are often faced with caregiving responsibilities that can feel like a burden and sometimes disrupt their lives. They too experience problems at work because of caregiving responsibilities and some choose to participate less in work to tackle these problems.
However, being able to participate in work, for both people with a chronic condition and for caregivers, is one of the key factors contributing to life satisfaction and quality of life. Therefore, the work context was chosen as a starting point for making change. Till 2030, SGF will focus on designing a strategy to increase work participation amongst people with a chronic condition and caregivers to improve their quality of life.
Action and Impact
In December 2021 Heartbeat Ventures became part of the core-team at SGF to help translate these goals into a strategic program and action plan in order to create actual effects on the work floor over time. We first needed to gain insight into the existing social norms and systems that drive the way we currently think about work participation, chronic disease, caregiving and co-reliance. And we needed to create a Theory of Change on how to influence and change these norms and systems.
Key insights were derived from a series of activities:
A landscape analysis showing more than 100 initiatives, including initiatives from health foundations and patient organisations, on the topics of co-reliance- and self-reliance, work participation, care giving and chronic disease.
Next to that, we provided insight into the ‘system-world’ by creating a system-organisation-map in which diverse laws, processes and stakeholders (such as employers), were mapped out to provide insight into the current system.
We held a series of interviews with several experience- and subject matter experts; ranging from HR directors to managers and owners of SME’s as well as subject-matter experts with and without chronic diseases.
To deepen our understanding of the experience of co-reliance on the work floor a research company did in-depth qualitative user research into 4 target groups key to creating co-reliance on the work floor: people with a chronic disease, people with care giving tasks, their colleagues and their managers.
Quantitative data was collected through desk research to support the above qualitative research, landscape scan and relevant findings from engaging with target segments.
All the work above was summarised into 5 key insights. Each key insight centred around existing social norms which drive the way we think about work participation, chronic disease, caregiving and co-reliance.
Then we held a co-creation session in which we asked a diverse set of participants to design the ideal situation(s) in 2030 on the work floor. Here, the voices from different perspectives came together: people with chronic disease, people in care giving roles, subject matter experts, members of the sounding board of SGF (the health funds and their respective constituencies). They all joined in co-creating ideal situations for 2030.
After the co-creation session, two visualisations were created to prioritise and summarise the findings. The current work floor visualisation, showing the tangible experiences on the work floor today. And the ideal work floor visualisation, which summarised and prioritised all the ideal situations (that participants had come up with in the co-creation session) into one ideal situation: the situation that the strategic program strives to achieve.
Iteratively, within the core team, we defined an impact model and a Theory of Change, identifying and defining the driving factors we would use to make change happen towards this desired future situation, aligned with SGF’s mission. We created a 10-year strategy including a 3-year roadmap for program execution. Using the two visualisations of the current and the ideal work floor helped us to relate intended program activities (e.g., communication, lobby) to actual effects on the work floor that could be measured.
Current reality
Ideal reality
Impact in numbers
32% of the potential labour force in the Netherlands has a chronic condition and 1 out of 4 employees is providing informal care. This program is carried out with them in mind. Next steps are to set up a monitor to measure the effect of the program.
Contact person: Annet Bruil