Co-creation in care and support

What it is

Co-creation means making something together. You develop something together with the people who will use it, for example clients and care professionals. Together you map out the problem, and together you look for what helps.

Also involve experts by experience: people who know from their own experience what the tool is about, such as the language ambassadors of Stichting ABC (a Dutch foundation of people who used to find reading and writing hard). For example, they helped test how easy patient portals are to understand. What they bring is called experiential knowledge.

Ways of taking part

There is a well-known ladder of ways to take part. On the bottom three rungs, people take part for show: they have no influence on the content or the direction. This is called sham participation. Above that are five real forms:

• Informing: people are told what is happening, but have no say.
• Consulting: people give their opinion and hear what is done with it, but do not help decide.
• Advising: you start something, but decide together with them.
• Co-producing: they start and lead it themselves, with your support.
• Deciding together: you decide together, as equal partners.

Co-creation belongs to the top forms: deciding together what the problem is, and making decisions together. So a satisfaction survey afterwards does not count, because by then everything has already been decided. Still, not everything has to be done together: different forms suit different moments. The ladder was designed for young people, but the words also help you say honestly, with adults, who decides what.

Why it matters

With co-creation, a digital tool is more likely to work for people with fewer digital skills too. Experts by experience also help organisations to name problems clearly and to improve the help they give. Two examples:

• An app for people waiting for mental health support. The research for it started with the question: what helps you? The people the app was meant for found personal contact and safe data most important, so the app is not linked to the client’s digital record. When the app is introduced, the team also calls people personally, and after four weeks there is a follow-up conversation. Clients value that contact.
• Research into the neighbourhood teams. In Leeuwarden, the organisation behind the social neighbourhood teams (sociale wijkteams) wanted to know how residents experience the help they get. The researchers decided together with residents and the teams what they would ask, so that the research went further than measuring satisfaction.

Co-creation also helps when you are going to introduce something new. People are more likely to be enthusiastic if they can share their ideas from the start. So involve everyone who will be affected by the change: clients, and your colleagues just as much.

Points to watch

• Say beforehand what is already fixed, and tell people afterwards what you did with their input. That last part is a condition for having a real say.
• Prepare your organisation. Working with experts by experience needs a change of approach in an organisation and among its staff. Organisations also find it hard to take experiential knowledge as seriously as professional knowledge. So start with the colleagues who are already open to it.
• Talk openly about power. In research, the researcher usually has more power and resources than an expert by experience. Be open about this, and make room on purpose for voices that are heard less. A neutral facilitator can help with this.
• Give experts by experience a real role. Discuss what someone wants to do and can do, and which role suits that. Let them help think things through, not just give criticism. And pay experts by experience for their time.
• Do not be too quick to think “we already do that”. That thought gets in the way of learning. Look back together regularly: how is the working together going?

Find out more

• Designing a digital tool together with clients: the steps, from the first conversation to the tool.
• Introducing a digital tool in your team
• Self-direction and digital tools
• What is digital inclusion?
• Custom work: how we make tools together with organisations.