How we set up the group
We planned to hold a large public consultation event in March 2020, running workshops throughout the day and involving around 60 people with lived experience of a mental health problem.
Because of the pandemic, we involved people in online focus groups instead.
Our lived experience designers ran 5 focus groups on Zoom. They designed these around themes that had previously been established, refining them and making them relevant. Some of the main themes were:
- Tone of voice
- Motivation (what motivates someone to take part)
- Connection to Mind
We also looked at:
- How sharing lived experience can benefit others
- The way shop volunteers take part in Mind’s work
- How we can best recognise volunteers' work and connect them with other volunteers
Why we involved people this way
We'd like to listen more actively to our supporters and give them an opportunity to shape our future through our workshops.
Influence and participation is a key principle and so it was really important to have lived experience designers being equal contributors in the process, designing and leading these workshops. They were integral to designing our principles and concepts.
The advantage of involving people online in smaller focus groups is that there's a lot more time to learn what's meaningful to each individual. Holding focus groups across 5 days allowed us to connect with a wide range of people. We learned more about their backgrounds and motivations for shaping Mind’s membership. And we were able to understand what influences them and what brought them to Mind.
How involving people with lived experience benefitted our work
The focus groups were well received and from these, we created 6 design principles. We used these throughout the development process. The principles were:
- As a partner, I can be a powerful force for change with Mind
- I find it easy to support Mind
- I have influence – nationally and locally
- I am seen and valued as a whole person
- I am part of a diverse group of people who are engaged with Mind
- I feel part of something bigger than myself
The lived experience designers were integral to designing these focus groups. And participants’ involvement was key to forming these principles. Their suggestions made the principles more affirmative and person-focused.
Involving people with lived experience has had a considerable impact on membership so far. It has helped us to:
- Understand what people want to see from membership
- Think about how to make it more participatory
- Consider how else we could offer opportunities
- Adapt the way we talk to members currently
- Adapt how we'll communicate with members in future
What we learned
Although we cancelled our public consultation, we didn't want to lose momentum on our project. The idea of involving people remotely felt a little out of our comfort zone at first, but in a short period of time, we all felt more confident working from home.
We hoped for 6 people to attend each Zoom focus group and made free tickets available on Eventbrite. We created a waiting list for those who expressed an interest in the event, and gave them a place when others cancelled their tickets.
On the day of the event not everyone turned up, so in future we'd recommend making more tickets available.
How the activity benefitted those involved
The lived experience designers and focus group participants all had the opportunity to contribute to Mind’s work, shape it, and tell us what their communities needed.
Some focus group attendees, who often find it difficult to access opportunities, enjoyed being involved in our work and representing what we do.
Support we offered
We created a 2-way conversation from the start, setting out expectations of the project and what it hoped to achieve. We did this in person before the pandemic. But you can also do it virtually with mood boards and electronic whiteboards.
The lived experience design team wrote a guide on how to use Zoom and sent this to everyone taking part in the focus groups. Not everyone had used the platform before or had experience of video conferencing.
2 staff members who were mental health first aid trained went to the focus groups. They helped create a safe environment and were ready to step in and support anyone in distress.
- Get comfortable with the technology, so you can easily support others on the day of your event. Spend time learning and practising with your colleagues.
- Put your faith and trust in group members. Be open about passing responsibility across to them. In the true spirit of co-design, make a conscious effort to pass control over to your co-designers. After all, they're experts by experience.