How do I work with the MS community on my project?
What’s the difference between involvement, engagement and co-production?
Co-production means that people living with MS are involved at every stage of a project and decision-making is shared between everyone involved.
It is more than informing, consulting, or engaging people living with MS in our work, as the ladder of involvement shows.
Who should I work with?
You could work with people with MS, or their carers, family and friends, or both. To know who to approach, you need to be clear about the problem your project is trying to solve.
So before you do anything else, think about your aims. You might find that your aims change once you start working with people living with MS. But to get the right people, you’ll need to be clear on what you're trying to achieve.
You'll also need to be able to explain your project to the people you'd like to work with, and give them confidence that their contribution will make a difference.
When you're deciding how many people to work with, remember that each person should have a meaningful input at every stage.
How can I work with people who live in different areas?
Unless you’re working on a local problem, you should try to include people from across the UK in your project. People’s experiences of MS care vary depending on where they live, so if you only include people from one area, you might miss out on important insights.
But it can be difficult, and expensive, to bring people together from lots of different places.
Luckily, there are remote-working tools that make it easy to connect with people wherever they live.
Tools that might help with your project include:
- Facebook groups - for quick and easy communication
- Lifesize - we have a company account for video-meetings and screen sharing
- Zoom - a free tool for video-meetings and screen sharing
- Trello - a free project management tool for recording research and insights and grouping them into themes
- Doodle - a free tool for arranging meetings
Where do I find people with MS to be part of my project?
You should start to engage with people living with MS very early in your project – as soon as a concept or priority has been identified. First, be clear on what you're trying to achieve and who can help you (people with MS or carers, for example). Then reach out to the group you've identified. If you wait to involve people later on, you aren’t truly co-producing your work.
Our expert by experience network is a group of people with different experiences of MS and different backgrounds who want to help us to deliver our projects. Email firstname.lastname@example.org to find out how to involve experts by experience in your project.
You could also speak to our Social Media Team about whether they can help you find volunteers from our online communities. They will need to know which groups you want to target - their relationship to MS, how old are they and where they live, for example.
- When starting your project, think about who needs to be involved as soon as possible.
- Establish some ground rules at the start of your project to explain your expectations of the roles, responsibilities, and behaviour of those you are working with.
- It can be difficult to share power, but make sure that there is joint ownership of decisions. Otherwise, you are just consulting or engaging – not co-producing.
- Be flexible. It’s ok if, after a discussion, you realise that your initial plan isn’t going to work. Listen to the conversation, take the contributions on board, and embrace change!
- Always give people plenty of time to prepare for meetings, ideally at least two weeks, and make sure that you send out any relevant documents well in advance.
- Can you hold your meeting by teleconference instead of in person? This will save you money (as you won’t be reimbursing travel costs), and time (on admin such as booking rooms). It will also allow you to work with a more diverse group.
- Consider the individual needs of those you are working with – including access needs, easy read documents, or support from carers.
- It’s easy to feel daunted in a group of new people. Try to facilitate the meeting by ensuring that everybody has the chance to speak and that they are heard. No one person in the group is any more important than anyone else.
- Make sure you update those who you are working with on the next steps and your progress – even if that is to say that nothing is happening at the moment.
- Don’t use jargon or acronyms. Remember, everybody has a different background and reason for getting involved so don’t assume that everyone know what they mean.
The steps to co-production
Developing solutions through co-production is all about:
- building empathy with people who will use the solutions
- generating lots of ideas
- developing prototypes
- asking for and acting on feedback as you finalise your solution
- sharing your solution with the whole MS community.
How to approach your project
When co-producing a project, we follow the Design Council's double diamond method, which divides a project into four steps:
- discovery - using insights from the community to understand your problem
- define - working out which insights are most important for the project
- develop - starting to create solutions, testing and learning from the community as you go
- deliver - sharing your chosen solution with the whole community
The tools you need
Our co-production toolkit is a collection of templates and exercises for you to use with people living with MS at every stage of your project.
You might also find these toolkits from other organisations helpful.