What we learned from our co-produced project

Photo by Dstudio Bcn on Unsplash

This blog is about our co-produced project in the content design team at Scope. Team members have shared practical advice which we hope will be handy for those new to co-production.

Follow these links to full reflections from:

• Sue (co-producer): My experience of co-production
• Ruth (co-producer): Making co-production accessible
• Grace (user researcher): What I learned from my first co-produced design project
• Stephanie (project lead): Some reflections on co-production

The project

How might we help newly disabled people find our content?

We use data to help people find our disability content. But most of this assumes that people know what they are looking for. We assume people have a name for what they need, and if we call it by that name, they will recognise it and choose it. All we need to do is make sure it gets in front of them in search results.

This assumption doesn’t always hold. Someone who is recently disabled may not have a name for what they need. For example, to get a wet room in their home they would need a social care assessment.

We want to make our information accessible to everyone, including those who are not familiar with the ‘language of disability’. So, we started a new co-produced project to find out how to make our information findable to newly disabled people.

Co-production

Two new colleagues joined us for the project. We recruited Sue and Ruth for their interest in content design, previous experience of co-production and willingness to bring their perspectives and lived experience of disability.

Here are our tips:

Agree how you’ll work together

Co-production is hard to define. People have different descriptions and some use different levels.

Rather than following a prescribed approach, we met up to talk about how we wanted to work together:

• Everyone has an equal role and responsibility in this project.
• We will listen to data rather than personal preference.
• We record things which are out of scope.
• We make decisions based on evidence and discussion.
• We prioritise opportunities for people to learn and practise new skills.
• We recognise our biases and state our assumptions. These are things to share, explore and test.
• It’s OK to say “I don’t know”, ask for some time to think, or opt out of talking about a difficult topic.

We agreed

• what was important to the project and
• what was important to our working relationships with each other.

We reminded ourselves of these each time we met.

Discuss the role of co-producers with them, especially if you’d like to draw on their lived experience

Grace: When agreeing co-producers’ roles with them, be clear about why you are doing co-production in the first place.

This includes:

• what co-producers want to gain from the project
• what you want the project to gain from having co-producers involved.

Stephanie: We also need to be clear about what we expect people to share about their lives. And about how we use that information.

Sue: If co-producers recruited to specific projects are only seen through the prism of that issue, this could feel like tokenism.

Agree who will have the final decision for each area of work

Grace: At the start of the project, I aimed to create a space where everyone had equal influence on decisions.

I learned that aim is not realistic or helpful. Next time I will focus on defining roles together, and agreeing on who holds the final decision for different parts of the work. Everyone can have equally important roles and responsibilities in the project, without having equal authority on every decision. For example, as a user researcher I won’t hold the authority on copy. I can express what our audience might need, but the wording will be the responsibility of the content designer and editor.

Stephanie: In the user-centred approach, disabled people and their families are ‘users’. We do research with our ‘users’ to help us make decisions, but decisions are still made by the ‘specialists’.

The aim of co-production is that disabled people have equal power in decision-making. But we also need to make sure that we base decisions on evidence and not on personal preference. And that the decisions we make are workable.

Regularly check in with co-producers during the project

Sue: Make sure they are OK with how their role in the project is going. This is especially important if the co-producers are sharing personal information and dealing with emotive topics. Check with them whether they feel like an equal on the project? Do they feel side-lined? Do they feel like their voice is being heard and their opinions taken on board?

Make taking part accessible

Don’t just ask disabled people ‘What adjustments do you need us to make?’ Ask ‘What adjustments have you already made to be here today?’

This provides a much better idea of the adjustments that can make working together accessible.

Ruth: My Zoom meeting will need concentration; I will need to be able to turn down the volume on my ever-present pain more than usual. I already do this with wheelchair, crutches, retirement, exercise, opioids, living in a bungalow, furniture choices and being fortunate enough to have a secure income but I will need more strategies. In addition to my hot water bottle, recliner armchair and phone, these are the things that I will bring to my meeting. They are my version of the things that every disabled person learns to accommodate and then mostly conceal. Being part of this co-produced project has made it possible for me to talk about them.

User research and co-production

Stephanie: When co-producers talk about their own experiences, it’s easy to blur the line between co-production and user research. And disability is so broad. How do we avoid skewing design decisions based on the experiences and perspectives of 1 or 2 co-producers?

Co-production is not a substitute for user research. And user research is not a substitute for co-production.

Grace: Thanks to those willing to share, I have a growing awareness of the situations disabled people navigate. My job is to describe these experiences to designers, so that they know who they are creating for, and what information we need to provide.

What I can’t do (as a non-disabled person) is anticipate the impact that a design decision could have on a disabled person without asking them. That’s what Ruth and Sue can do.

Good user research means considering a broad range of situations that people may face when using your service. It means that co-producers don’t carry the weight of representing all disabled people. Co-production means building accessibility into your processes. It means guarding against omissions that result in inaccessible design. You need both.

Co-production is not a stand in for diversity

Our co-producers brought their experiences of life as disabled people to the project. They brought new perspectives that we may not have considered. For example, some disabled people may view simpler designs as patronising.

But if you want to make services or products accessible long term, you need disabled designers, user researchers and developers working permanently in your teams.