What It's Like To Help Co-Design A Fund - A Community Participant Perspective
Written by John Whelan and Betty Efemini. John and Betty are TSIP Associates and Community Connectors and were part of the TSIP team working with BSA on the co-design of its Ideas Fund
Who would have thought that 2020 would be such a memorable year? A year which saw our normal ways of living and interacting change with the global COVID-19 pandemic. It was against this backdrop that we were asked by The Social Innovation Partnership (TSIP) to get involved in co-designing a new programme called the ‘Ideas Fund’. The British Science Association (BSA) and the Wellcome Trust appointed TSIP to lead on the design of a programme to enhance diversity, inclusion, and innovation in public engagement (PE) with health research. This project included a review of PE funding models; interviewing PE pioneers and funders; and engaging with community members from across all 4 UK nations in a series of online co-design sessions. The approach relied on us as community connectors to bring together a diverse group of people who, through the co-design workshops, helped shape the focus, approach and impact aims of this new fund.
Community Connectors - Who are we?
Let’s introduce ourselves before we share our thoughts and conversation with some of our community co-designers on the project as part of this reflective blog.
John’s background is in theatre and community engagement, and he has done a variety of health and wellbeing projects in the past.
“My personal perception was that health research was something which normally just ‘parachuted’ into an area and relationships were never deep or personal with a community. Through the ‘Giving Lab’ project in Walworth I got involved as a community member and I really liked the way TSIP and the team worked with a community to co-design ideas and new ways of working. When they asked me if I would like to get involved as a community connector on this project with BSA I was a little unsure about how I would engage people but with the support of Marion and the team, and this interesting democratic concept of co-designing I thought, why not give it a go! I always like to learn and expand my horizons and health and wellbeing is something which threads through all of my work as a theatre and community practitioner, so I started to hit those phones to engage the community in co-designing this new Ideas Fund.”
Betty, the other community connector on the project, also has a background in working in health promotion, social enterprise and crafts and community engagement.
“Like John I got involved as a community member and through the “Giving Lab Project. TSIP are experts at engaging the community and are able to engage everybody at the grassroots level. TSIP gave the community a voice to be heard and the ability to connect with a wide range of diverse people from different walks of life actually coming together to co-design the project. I was excited to get involved with the project and engage with the community on this unique project. Co-design was a whole new concept to me at this stage. I learned so many new skills and ways of working on zoom and hosting a breakout room. Marion and the team were very supportive throughout the whole process. The experience also improved by wellbeing at a time when everyone was isolating during the pandemic.”
At the start of the project, as community connectors, we were about to go on an exciting journey and we didn’t know the final destination. That was the exciting part about being involved in this co-designing project. It was great to work with such a diverse group of people from across ages, genders, ethnicities, and geographical locations through this new medium of Zoom! Who knew one of our greatest learning curves would be mastering the likes of facilitation in a breakout room? But Covid also gave us pause for thought to learn about ourselves and design a new fund at this challenging time. We both think that this backdrop, in a bizarre sort of way, added to the co-design process and eventually fed into the design of the ‘Ideas Fund’. It was a time of flux for all of us on a global scale, but it on a more personal level made us think about our own communities, how we look at health and how we do things. Sometimes it takes significant national traumas and challenges to be able to rebuild, creating new and improved ways of doing things, and COVID-19 was one of those times, creating one of those windows of change and possibility.
Our journey was shared by the cohort of 43 community members involved in creating and co-designing this new fund. Given their role in helping to shape what the fund looks like, making decisions about the application process, etc., we wanted to understand and share their experiences.
Often projects like this will have reflections from the funders on the process but given the focus on community leadership and ownership in the work, we wanted to ask the community members about their experiences. We believe this approach can build deeper learning as often it is felt that the power rests with the funder and researchers. Giving a voice to the community to hear about their experience enables that power dynamic, real or imagined, to be challenged. We believe this reflective blog is a good way to explore this and to feedback learning.
Our interviewees
Ade Bademosi, who lives in South London, is interested to see how far the voices of those involved in projects can go and what impact this collective movement can have.
Michelle Strutt is an actress, writer and mother who is excited to see how community engagement with health research can be used to stimulate positive change in society.
Why did you get involved (and stay involved)? And what was your motivation?
Ade: It was the first lockdown and nothing else to do and it looked interesting! I stayed involved as I like to learn about the relationship between funders and the community and the nuances that go on with these relationships. Also along the way I met a lot of interesting people with interesting perspectives. Certain enjoyable moments during the 6 weeks of sessions were when people enlightened me about the system and how it works. People like Chad would say things that I could relate to about the nonsense of how applying for things can be sometimes. I really related to this!
Michelle: I think, at first I was just kind of curious - it seemed like a really worthwhile project, of bringing health research into the community. When I heard the word research it made me think about scientists. I believed it would all be scientific and go over my head and it would not be relevant to the community. But then I heard it was a partnership. I stayed because I thought it would be interesting to hear other people’s thoughts and views. I believed that researchers and the community would collide and make long term great progress and that is why I stuck with it.
What do you think we achieved?
Ade: It created a real sense of camaraderie, it was the first lockdown, it was interesting to have people to talk to. I would say from the BSA perspective it highlighted that hearing different people talk is the way people should collaborate. Our voices were heard and appreciated!
Michelle: I think the most brilliant thing that we did was to create that streamlined application form, which meant that the process would be productive for the community to access the fund. We also achieved a marriage between the community and research, and we came up with the criteria in order for the community to work productively with the researchers.
How do you think COVID-19 impacted this work?
Ade: It gave you more time to be present and see this as a priority. People were more in tune and allowed people to check themselves. Before COVID people just went with the flow. The COVID situation and the sessions themselves meant that people thought about themselves and the world! Also, some people weren’t working and this opportunity paid for their time - reason to come back. Also, it was good to learn. I felt in my spirit it was a good place to be!
Michelle: Because we used Zoom, we got a load of different people from different areas and backgrounds together. This enriched the experience, and we reached a wider audience. If we’d organized meetings in person maybe the person from Scotland for example would not have attended the meetings.
What did you personally get from being involved with this process?
Ade: Personally, I was able to navigate my own purpose in life! I’m very introspective and a thinker! This project was a way I could use this and my own creativity to make a difference! It put me in the arms of people that are trying to make a difference. There was scope for me to bring what I bring to life in these solutions.
Michelle: I learnt about different people's opinions from different backgrounds and how to reach different people in the community. I didn't know that I could reach out and engage people on different types of platforms!
What did you learn about yourself or others?
Ade: Listen! I learned how to listen more and that others need to listen.
Michelle: I learned that I chat a lot. I learned to listen to others and take on other people's ideas and opinions. We were flashing and bouncing ideas between ourselves. I think I have a voice in the community. The person who chaired was brilliant at encouraging people to speak out. It was brilliant and well organised.
Was it good for your well-being to be a part of this process?
Ade: Yeah, as it gave me something to do away from the norm.
Michelle: Yes because of lockdown and everything else. Just seeing different faces made you feel less isolated, so it was really cool. I also felt a sense of community. In fact, I felt sad at the end to leave because I would not get to speak to those people again in that environment. The breakout rooms were brilliant to work in smaller groups.
What did you get from building this fund together? For example, what did you learn about areas such as health research, Public Engagement and Community priorities?
Ade: Health research was my least favourite part and Public Engagement was attractive and not normally a mutually beneficial relationship. When it comes to community priorities, everyone's priorities are different, it depends where you sit in life and depends on the world around you!
Michelle: I learnt that it is important to engage members of the community in effective way and different ways and I learned that with medical research it may be difficult to engage the right people. Another important thing I learned was that the community wanted to be heard, and it was important to focus and target the right people in the community.
What do you think are the most important things to consider when developing/ designing a new fund such as this one?
Ade: Make sure you have your audience in mind - you need to do your market research and investigate how certain people would respond.
Michelle: Engage different representatives that represent all in the community and not just those with the loudest voices. Get people involved who already have an idea in mind.
Did the process break down barriers between community members and researchers and funders? How/ why not?
Ade: Can’t really answer that as I have a lack of experience with it but people did flow nicely together but I can't say if it broke down barriers in the medium and long term. It would be good to potentially develop the group in the future, I don’t see why not!
Michelle: Overall it did. All groups were open and able to ask questions of each other which is important.
What did you find the most challenging with the process?
Ade: Being on zoom. I prefer human contact.
Michelle: Sometimes there was not enough time to discuss the questions in designing the fund. I also don't normally like being on zoom, but it has developed my confidence in being on zoom
How can we, BSA or Wellcome Trust improve on our approach to involving people in creating funds?
Ade: I believe no individual has the answers we have to work with others! Co-designing and creativity is about working with people and collaboration. Our life and new funds should be designed like this! It is also good for ideas to fail. That is how we grow as human beings!
Michelle: Improve its publicity and use of things such as social media and target harder to reach groups such as young people or mums with baby drop in facilities. Financial rewards are also important.
From your perspective, what should the next steps look like?
Michelle: Create a group and continue co-designing and maybe apply as a group to do something around mental health. This group and cohort could be given a package of training.
Is there anything else you would want to share about your experiences?
Ade: I’m grateful to have been involved in the project. I would be interested in being involved again. It depends on what it is and what creativity is involved. At present I’m interested in family dynamics, race relations, and the world and its history.
Michelle: I would really like to see these people again and potentially develop this group to do other funds/ projects. There was an issue in that the funding wasn’t reaching communities in London despite many of the people involved in the co-design being from London. Also, it’s great that researchers through co-designing have more awareness of the community they need to work with. I think researchers should be embedded more into a community. I learnt in general about the process of how to apply for funding. I also learned that often grants are given to organisations through professional Grantmakers and how sometimes the decks are stacked against communities. How streamlining the form and application process can help prevent this. People were encouraged and given a platform to speak openly. Proof will actually be in the fund itself!
KEY TAKE-AWAYS
Based on the interviews we both decided that there are some key takeaways from this project to inform future projects and models of co-designing in the future:
Model: This co-designing cohort group on the ‘Ideas Fund’ is something that could be developed in the future as its own entity.
Training: Training could be offered to this cohort and developed as a resource for other future co-designing projects. Training should be offered as part of the co-designing process - which might be a longer process but the rewards of this would be very beneficial to those involved and the outcomes of the process as well.
Community: From both interviews we did get a sense that Covid has given people a new interest in their communities’ health and well-being. This should be used as a springboard to connect to communities and collaborate with them in the future. This awful time with COVID-19 showed us that people do want to change things and get involved in co-designing new solutions and this co-design approach is effective in working with communities, researchers, and funders.
Targeting: Funders such as BSA and Wellcome should also target their outreach more into specific locations with various specific needs such as issues around facing BAME communities and health. Another key area which was highlighted by the community co-designers was to make the application process as easy as possible so you can connect to people who are really in need.
Embedding: Embedding researchers in communities where they can really learn about the issues communities face is the way to inform similar projects in the future.
Overall we believe that clear pathways of dialogue, breaking down barriers and power hierarchies between researchers, funders and communities, is the way to progress in the future. We can use the lessons learned during COVID-19 and the results of this co-designing process to inform the design of future funds and models.