By Dr Susan Kohlhaas, Executive Director of Research, MS Society

Published: 29 May 2019

Big data will revolutionise our understanding and treatment of diseases.  

At least that’s what we like to believe. But we all know it’s not as simple as that... 

At the MS Society we’ve had our own experience of grappling with the potential of big data versus the reality. In 2011 we launched the UK MS Register, based at Swansea University. The Register is the first MS registry that has the capability to link patient reported data with clinical data and, for all of Wales, routine NHS data. 

We continue to be incredibly excited about the potential the Register holds in transforming our understanding of MS. But excitement doesn’t automatically translate into impact. Here are some insights I’ve picked up from the many conversations I’ve had. I hope you find them useful.

  1. Expect to be in it for the long haul.

Developing a sustainability plan sounds really straightforward on paper. You just seed fund a pilot study to show proof of concept and then wait for the support, sponsorship and partnership opportunities to come in – right? If only it were that simple. People want to see the value of the data that’s been collected before they partner or co-fund and that takes time to build. It’s important to manage your own expectations and that of your stakeholders around how long it will be before you expect to see impact. Realistically you need at least 5 years of data collection to begin to show its utility but it can take longer.

  1. Co-production is not an option – it’s essential.

People with MS have been involved in the development of the UK MS Register from its outset - something we’re proud of. But it took me a while to realise that co-production doesn’t just apply to people affected by MS, it applies to all groups using and contributing to the Register including clinicians and the academic community.  Once I started to understand this, we started changing some of our structures to include more co-production with different groups. That was a game changer and we’ve adopted this approach elsewhere too.

  1. Data sharing is hard.

In the field of MS we’re fortunate to have a collaborative academic community who want to make progress for people with MS. But some of the most difficult conversations I’ve had are about data sharing. We rely on 45 clinical sites around the UK to consent and input data about their patients for the good of the entire academic community. That can be hard if you’ve invested a lot in your own data set. We’ve adopted our approach in this space to be more about data linking and working with other registries on questions that nobody could address alone. If we can show the value of joining forces and working collaboratively then the MS community will forge even deeper partnerships.

  1. People with MS are incredibly generous with their data.

We have just over 100,000 people with MS in the UK and 17,000 of them are voluntarily taking part in the UK MS Register. What drives them is the knowledge that their data may one day help other people with MS. Initiatives like #datasaveslives are vital because they show how essential data is to transforming outcomes. It’s our obligation to use that data.

  1. Partnership working has helped us achieve more faster

When we first started funding the UK MS Register we had a different approach to funding research which was more transactional than it is today. What I’ve discovered is that some things are best done in partnership. Putting all of the onus on the academic led registry team as a recipient of funding, or on the MS Society as a funder didn’t work for our biggest challenges. It was only when we started working closely in partnership and viewing some of the issues we were facing as collective challenges that we saw traction. 

  1. Don’t underestimate the value of the right expertise

Data science is an area that we as a country need to build capacity in. In the field of MS we’re lucky to be partnering with the University of Swansea and some amazing data scientists that are able to bring knowledge and insight from their own networks such as the SAIL databank, the Farr Institute and Health Data Research UK to our programme. That expertise and insight helps us link into the wider ecosystem more effectively and shouldn’t be underestimated.

I’m incredibly grateful to others in the sector for helping me think through some of the bigger challenges I’ve been navigating in this space. If you’re funding a registry, or thinking about it, I’d love to hear from you.