Q&A: Building a movement with EDIS Lead Dr Lilian Hunt

EDIS now stands at 29 member organisations working together to drive collective change across the science and health sector. We talk to EDIS Lead Dr. Lilian Hunt about EDIS' mission and vision, the impact of inequality in research, and what EDIS has planned next.

Let’s jump straight in: What is EDIS?

EDIS is a coalition of organisations with a commitment to equality, diversity and inclusion in science and health. Realistically, it’s a learning space, a collaboration space, and a movement-building space with a drive to push EDI forward. Rather than being stuck in the structures of a single organisation, it’s multiple organisations coming together to push towards a shared objective. That’s what EDIS means to me.

The fact that we have a coalition of organisations that have bought into the social justice framework for EDI in the science and health sector gives us more freedom as a collective voice under the EDIS banner. We can make bolder statements and push harder; we can try new things and experiment. We will publicly share our learnings [article] and where we’ve not quite hit the mark or need to improve – because it’s under the EDIS banner, it means that no one organisation is taking sole responsibility for the sector. It’s a shared responsibility.

EDIS’ vision statement is “For everyone to have equal opportunities and access to a successful career within science and health, its research and its outcomes.” Why is everyone having equal opportunities within science and health important?

The crux of this statement is fairness. It is unfair that there are barriers to people being involved in science and health, whether that’s careers, research or otherwise. So firstly, this is the ethical thing to do. Then there’s the fact that science and health research has such a broad impact on society and if there’s exclusionary structures within that, it means those exclusions filter through to wider society and health issues as a result.

If we, as a sector, are going to be genuinely accountable to the whole public then we need to include everyone within the scientific endeavour. That means fairness in the way that we research as well as who is involved in that research, otherwise the benefits won’t be shared equitably. The impact of inequality on health is severe, dangerous, and potentially even deadly.

No one solves a science problem on their own – we do things as teams. That can feel more tangible in health and clinical settings because you can bring in lived experience and community leaders, among other things. It also works on the pre-clinical and biomedical end because different ways of looking at things, interpreting results or evaluating what’s important is driven by who you are. Different ways of thinking come up with better solutions.

In February 2022 EDIS presented oral evidence to the Science and Technology Committee into diversity and inclusion in STEM [article] and highlighted the need for systemic change in the sector. What else has EDIS achieved so far?

There’s a real mixture of things we’ve achieved. When EDIS was first created, the ambition was to elevate the conversation around EDI and the importance of no longer being passive in this area. Part of that was pushing for things like positive and equitable action – I’m really proud to say that we’ve had that conversation and we’ve had it publicly. We’ve shared it in our writings, our conferences, our events, and with our members and now we’ve seen that go into our members’ new strategies.

I then get to look at those strategies and compare them to where the sector was five years ago. The fact that some organisations even have an EDI strategy is fantastic, as is the language in them that references equitable treatment, social justice, and action for change rather than passive monitoring. That’s been a huge shift.

Our other focus has been around inclusive research and experimental design [webpage] which links who’s doing the research, what research has been done and who benefits from it. The EDIS Symposiums in 2019 and 2021 really helped to progress that conversation. I think people were quite unsure about how it would apply in a preclinical context compared to a clinical context, as well as how it applies in education environments.

After leading a conversation around inclusive research and experimental design and providing case studies, I’m pleased to say that’s now turned into grants and support for collectives who have been able to talk, train and lead in this area. We’ve facilitated policy changes to support that within funded research as well.

In addition to that, seeing how the publishing sphere has reacted to those changes and begin implementing them in their publication policies has been great. Some specific examples of change include our inclusive name change guidance [PDF] that benefits both trans people changing in their names and, for example, women who have been in marriages with domestic abuse who want to disassociate themselves from their previous name.

Over the last few months, EDIS has been working with strategic consultants The Equal Group. Can you tell us about why EDIS has been working with The Equal Group, the process, and what the expected outcome will be?

We’ve been working with The Equal Group [article] to develop our plans for EDIS to spin out of Wellcome. Wellcome has supported us from the beginning – it’s been one of our founding members and incubated us by giving us space, funding and support. The plan has always been for that incubation to help us grow and, eventually, to become an independent organisation with our own remit.

The Equal Group has been working with us to engage with our members, potential new members and the wider community to really understand what EDIS will look like in the future – as an independently registered membership organisation, how do we engage our members? How do we make decisions, what governance structure do we have? How do we generate funds to keep our work going? How do we create change in the sector?

The Equal Group are fantastic because they are an EDI-embedded organisation, so they’ve been able to add that lens to all of the decisions we’ve been making. We have to prioritise EDI above anything else for every single decision point, which is really exciting and it’s throwing up some interesting questions and challenges as to how we will function in the future. I’ve never seen an organisation start with that as the priority.

In light of this work with The Equal Group, what does the next 12 months looks like for EDIS?

Really exciting! The main thing is finalising the plan for spinning out of Wellcome. The EDIS Development Board is helping steer how we register as an independent entity with the input from The Equal Group but, obviously, starting an organisation is a lot of work. We’re expanding the EDIS team and hiring a Business Manager to help support that process and hopefully the job application will be out in mid-August to mid-September.

We’re also going to refresh our strategy. We’ve gone through a natural cycle after our first few years and now we’re at the size where we say “Okay, what additional big changes do we want and what is a common thread across these different areas we can work together on? How do we implement real changes in the sector?” That’s going to be really cool.

We’ve got an Inclusive Communications Workshop in August for EDIS members being run by Robin Craig, our Communications and Administration Officer. I’m excited to see how we expand that communications work and the strength of our voice – that’s going to be a huge part of our future work.

The other piece that I think we need to do better on is acting on anti-ableism within the sector. We’re improving on that – we’ve had the National Association of Disabled Staff Networks talk to our members and they’ve been a fantastic community to work with. I’m excited to see what changes we can make beyond just inclusive and accessible conferences and communications – we’re going to start challenging the way the sector does research and the concepts behind it more.

Beyond that, we will be at several conferences and events in the autumn raising our profile and make sure people understand what’s going on in EDI work currently rather than data from five years ago. There’s also interesting work coming through about inclusive leadership and what that means within the sector – we’re starting to think about whether there’s any changes we can be pushing for there that will have a long-lasting impact.

You can keep up to date with EDIS on our Twitter, our LinkedIn or via our monthly mailing list.

Have any questions about EDIS? Drop Robin Craig an email at r.craig@wellcome.org.