S1: #3 — A focus on the co-design process
It’s a long one this week — so much has been happening, and this doesn’t even cover it all. I must say, I am finding the process of doing the week notes extremely helpful in recognising how much we are actually getting done but it is also making me stop, reflect and identify where we can be doing better. As always, if anything jumps out at you and you would like a chat, please do get in touch….
What’s been going on?
Planning and governance
- The usual planning and governance meetings. We have a Project Team meeting every Monday, a Project Board meeting every two weeks and a British Science Association (BSA)/Wellcome catch-up every two weeks.
- ‘Project Board’ is a very grand name but essentially it is an opportunity to bring Gill from BSA, Alex from Wellcome and any other key players up to speed and debate a few issues with them. (Gill and Alex are the respective accountable leads within BSA and Wellcome for this work.).
- This week we had a good discussion around parameters for the brand development of the new grants programme. Again, the brand and tone of voice will be co-designed with potential applicants, but it is important to know if the BSA and Wellcome have strong views in terms of fit within existing brand guidelines. This is still to be confirmed, but it felt very much that we were on the same page of it been driven by potential applicants, ensuring the brand was inclusive and accessible.
- Another area that we spent some time on was the potential tension between research led by those with lived experience versus academic rigour or issues with research credibility. I was really pleased that there was a consensus around the validity of lived experience research.
- I have started conversation with our legal advisors about the need for their input around grant offer letters and terms and conditions. We will need to consider whether our grant award terms and conditions have to mirror what we have with Wellcome as we are onward funding. However, we also agreed the importance of language and simplicity in order to reflect the aims of the funding programmme.
External catch-ups
- I spent some time catching up with various people I know from different previous roles who are all doing very interesting things related to health and diverse communities.
- I chatted to Orlando Arnold who is Transformational Income Lead at Versus Arthritis. It was good to learn more about them and I was fascinated how they generate income through their grant investments and intellectual property — enabling them to invest more in support and research. They also recognise the challenges of diverse voices in the medical research they support.
- I met Nick Webb from the Innovation Unit a few years back when they started a programme to replicate the Lambeth Living Well Collaboration, looking at new models in community mental health and primary care services. I was always impressed by the significant levels of co-production they achieved where local communities were true partners in the development of solutions around health and wellbeing.
- I also caught up with Paul McColgan at Community Renewal who are doing some outstanding work in Scotland with diverse communities. We talked about the health disparities in the Roma community in Govanhill that they support as well as TheWel programme that has been hugely success in helping people achieve radical, progressive, self-sustaining shifts in their health and wellbeing.
Reflections/ learnings of the week
This week my reflection and learnings are all centred around the co-design design work that has been taking place, led by TSIP.
Background
- We know that we want to have a funding programme going forward that reaches underserved communities. We also know that the previous Wellcome Public Engagement Fund, which was focusing on generic underserved communities, did not attract the diversity the programme was striving for.
- In the development of this new funding programme, we are committed to co-designing it with people who would engage with and benefit from the fund. Therefore, the co-design participants must reflect those underserved groups we want to reach. But how do we know who the underserved communities in health research are?
- TSIP did a fantastic job of gathering existing evidence bases, reports and case studies to draft an initial literature review. Alongside this they have been speaking to various stakeholders who have experience in policy, practice and research in public engagement and health. This is nearly finished, but the initial stages of the work identified the following groups as underserved in health research: Minority ethnic groups; People with long term health conditions; People from lower socio-economic backgrounds.
- With his in mind, we reached out via TSIP, BSA and Wellcome networks to invite people from these backgrounds or who support these communities to the co-design workshops, alongside researchers.
- We used three outreach approaches: the first using TSIP’s ‘community connectors’ who had wide networks within a number of communities and approached people to be involved; the second was directly engaging with a number of the BSA’s Community Leaders; and thirdly, reaching out to community organisations and charities.
- The third of these proved less successful in getting people involved, which is a real shame as it was this approach we were depending on to get diversity in terms of geographical coverage. I would definitely find a different way to make personal contact with community organisations and charities next time round.
Who was involved?
- The first two sessions involved 45 people and these sessions focused on the overall goal and objectives of the funding programme and the starting point for design. 30 people then continued to be involved in the remaining three workshops considering what a fund might look like:
▶ 77% of these were community members
▶ There was diversity in terms of ethnicity and age
▶ 92% of participants described themselves as heterosexual, which is in line with the Office of National Statistics figures for UK population in 2017
▶ We could have done better when it came to the gender split with only 30% men
▶ As mentioned above, we did pretty poorly when it came to UK wide representation
- There is an assumption that men are less likely to be involved in health research, therefore it was a missed opportunity not to have more involved in the co-design sessions.
- Also, my experience has been that currently community organisations and charities are busier than ever, which is not surprising, so this could account for some of the challenges in reaching out to them.
- Unfortunately, some got back to us just as the co-design sessions were finishing. However, I am still adamant that the final design of the funding programme has UK-wide relevance and therefore we need to test that out — not just make assumptions.
- Therefore, once we digest the feedback from the co-design sessions, we will sense check the draft prototypes with a wider community representation from across the UK and with more men.
- There is an assumption that men are less likely to be involved in health research, therefore it was a missed opportunity not to have more involved in the co-design sessions.
- Also, my experience has been that currently community organisations and charities are busier than ever, which is not surprising, so this could account for some of the challenges in reaching out to them.
- Unfortunately, some got back to us just as the co-design sessions were finishing. However, I am still adamant that the final design of the funding programme has UK-wide relevance and therefore we need to test that out — not just make assumptions.
- Therefore, once we digest the feedback from the co-design sessions, we will sense check the draft prototypes with a wider community representation from across the UK and with more men.
Why was it so popular?
- What I am most proud of within all the co-design work, is the feedback from the participants. You could visibly see people get more confident to express their views and on the last Zoom call, they were exchanging details to keep in touch.
- I think there were various keys to the success of it:
▶ People had pre-briefings with the community connectors, so they were not coming into the topic cold
▶ The purpose was clear in the pre-briefings and it was explained at the first session again
▶ It was made relevant to the participants
▶ Participants were paid the London Living wage for their time
▶ There was a great use of breakout rooms with strong facilitators to ensure everyone had a chance to be heard
▶ Participants were offered various resources to enable them to take part, some of which was taken up e.g. data credit
▶ The group got to know each other over a short period of time — it was only one week between sessions so there was real momentumPeople had pre-briefings with the community connectors, so they were not coming into the topic cold
What next for the participants?
Many of the participants were keen to stay involved or be kept up to date on the progress of the fund. They have been offered three specific opportunities to be further involved:
- The Brand Steering Group (Helen from Red Stone, our brand agency partner, has suggested that their first task is to give themselves a better name!). They will direct the look and feel of the fund’s branding.
- User design and testing of the application and support process, e.g. the application form and/or methods of applying. Angela, (Hypen8, our Salesforce partner) your challenge is for your group to come up with a snappier name than the branding group come up with!
- Feeding back on the draft prototypes later in the Summer, including the funding scheme ‘prospectus’.
We will also be making sure they are kept up to date with the developments the whole way through to launch. If we didn’t, we would only be mimicking their poor experience of health research — people coming in, asking lots of questions and then nothing!
Achievements
- Within 8 weeks, TSIP has managed to design and deliver a comprehensive set of five co-design workshops with 45 community members, community organisations, charities and researchers getting involved. Each and every session has produced mountains of insights, ideas and suggestions for the development of the new funding programme. Not only that, the feedback from participants (as outlined above) could not have been any better. The TSIP team has done an amazing job, but a huge shout out to Marion (Principal Consultant at TSIP) specifically who has pulled this off despite a few setbacks due to illness.
- We are only one week into the new Project Team structure, now that we have Helen from Red Stone and Beth from the BSA onboard, but it feels like we have been working together for months! A real natural rapport has developed and with that, new perspectives and challenges to our assumptions. The quote of the week definitely has to be from Helen. ‘You keep talking about people. But who? Who are these people you are talking about?’ Great challenge — if we aren’t being clear amongst ourselves, how can this be clear to others we are trying to reach with the new funding programme?
Watch out for my notes next week where I will be sharing insights from the co-design sessions and talk about how on earth we take all that information, alongside our literature review and stakeholder interviews, and turn them into draft funding prototypes…