Mind The Gap: Stories of health data equity

Read below a blog from our Diverse Data Programme Lead, Dr Maxine Mackintosh, on the launch of our Mind The Gap collection.

What is ancestry? What is diversity?

On the surface of it, these seem like fairly straight forward questions. Any seasoned geneticist can recognise these terms as important to genomics, but try to get a consistent definition or articulation of the challenge on our hands in the lack of diversity in genomics and you’ll be hard pushed to find any two people whose ideas and definitions perfectly align.

The same can be said for how best to address the lack of diversity in genomics. Is it about trust of excluded communities? Is it because of a lack of data? Is it because our health institutions are set up in such a way? In reality, it’s all of these and more.

As the Diverse Data programme has been finding its feet and getting a brilliant new team up and running the most notable learning is how complex the challenge of improving genomic data diversity is, but also how diverse everyone’s understanding is, and how diverse the approaches are out there to address it. It’s been a privilege speaking to major global institutions and individual community activists alike, as to how they are ensuring equity is at the core of new advances and the implementation of genomic medicine in mainstream healthcare.

Many people we have spoken to have said acknowledging there is a problem is the first step to addressing it. This is not to say that inclusion, deep and genuine patient engagement and diversity hasn’t been at the core of Genomics England since its inception, but if anything the last 18 months has taught us is being explicit and addressing challenges of health inequalities head on is the only option.

So we’re launching Mind The Gap: Stories of Health Data Equity, a live, growing, crowdsourced collection of stories, articles, podcasts and videos which acknowledge the sheer depth and breadth of the challenges and opportunities we have in tackling data diversity in genomics which can be found at www.mindthegap.health.

So why Mind The Gap?

We need diversity in approaches to tackling the diversity challenge

Poor genomic data diversity is a longstanding challenge, but there is no single solution for which we can pull out our magic wand. We need to celebrate all the successful approaches (and learn from the failures!), share this more effectively across the genomics and health data community, and recognise that there are so many ways we can go about working on improving diversity in genomics.

We want to raise awareness of the implications of biased genomic and health data

We were so pleased to see the news that an independent review was to be launched into the impact of potential bias from medical data and devices, but unfortunately, awareness is still very low amongst the medical and technology communities about exactly how potentially impactful biased data can be on health systems. A lot of the excellent work around the world sits in inaccessible reports, or behind paywalls of academic journals, that researchers around the world and members of the public alike struggle to access and penetrate. We hope Mind The Gap reduces those barriers at least a little bit.

We want to be a platform for the diversity in data community

When we talk about Genomics England as a “platform” usually we mean the technical service and infrastructure we provide to enable genomic medicine to support the NHS, and ensuring that genomic data is available for research. But we also can be a platform in many other ways. Our national reach and our global presence means we have a role to play in providing the space and stage to those trailblazing in one way or another. Being a convenor of the best people, organisations and approaches, and listening first to the experts in this space, is right where we want to be.

The hardest conversations start on the fringes

We won’t beat around the bush. Questions of genomic data diversity are scientifically and clinically driven by need and evidence, however also butt up against complex social challenges including racism, eugenics and abuse by the medical research community. Many of you have said you have struggled to find safe and open spaces to share candid thoughts or stark research in your own, often risk averse, organisations. Whilst Genomics England doesn’t necessarily share the views shared by all the Mind The Gap contributors, it is exactly for this reason that the contributions are so invaluable to ensure we all listen and learn.

Crowdsourced and ever-growing

The best part is that Mind The Gap is a live collection. We can’t wait to meet amazing people along our journey of shaping and delivering on an ambitious strategy in the Diverse Data initiative and encourage these interactions to be shared via Mind The Gap, for the rest of the genomic community to benefit from. This is an ongoing conversation and should continue to be as we take concrete steps and actions to making sure genomic medicine is as equitable as possible.

It’s been a wonderfully collaborative effort, and we can’t wait to share with you our next set of articles, podcasts and videos (as well as the amazing illustrations supported by creative extraordinaire Lily Kong. But most importantly we want you to share your stories with us and the community, visit www.mindthegap.health/share-your-story to learn more.