21 November 2024

Read about the importance of data sharing and what the Medical Research Council (MRC) is doing about it.

One of life's little chores is making sure that the recycling is in the right container and put out on the right day. It's not always easy to get it right, but, in the end, we do it because it's the right thing to do. MRC thinks that when it comes to research data, the right thing to do is to make data as reusable as possible.

How do you make data reusable?

Getting access to data uses public money, time and effort from MRC and from researchers. We want to get value for money and to increase the societal benefit of research by making sure that data in MRC-funded research is made available beyond the original research team.

That is why we have updated our data sharing policy to make it clear what we now require MRC-funded researchers to do when it comes to using data. We want to encourage and support an environment where making data available to other researchers in a fair, safe and transparent way, is the norm.

This isn't always easy. We know that there can be barriers to data sharing that raise some questions. Why spend time making data available when you could be writing a paper or a grant application? Is it legal to make research data available? Who pays for making data available?

We know that not all research data is shareable, but we also understand that it can be easy to find an excuse not to share data.

What is MRC doing to help?

We are addressing these issues by producing guidance to help researchers comply with our policy. For instance, signposting resources and repositories to make this a smoother process. We are also working with the research community to identify barriers to data sharing and ways of resolving these. We have made it clear that when applying for funding, researchers should outline their data sharing plans and ask for an appropriate amount of funding to make data sharing happen.

We are very pleased to see that some research teams are already sharing their study data. Researchers can apply to the DecodeME Data Access Committee to access the data originally collected for the DecodeME project.

Successful applicants can access both questionnaire responses and genotype data for the world's largest cohort of people with Myalgic Encephalomyelitis, also called chronic fatigue syndrome, or ME.

Find out about the DecodeME data access process.

It's also possible, with the right approvals, to ask for participants to be re-contacted, if further data or samples are needed. This allows rapid and cost-effective access to this data and therefore more research to be carried out into the cause of these conditions, ultimately leading towards developing treatments.

DecodeME lead, Chris Ponting, said:

From the start, DecodeME has focused on accelerating ME research. Our cohort, many of whom are severely ill, went to great lengths to provide their data. This invaluable resource needs to be repurposed across other studies as soon as possible.

DecodeME offers a rich data set for over 27,000 participants, 86% of whom have consented to their data being shared and 95% to being recontacted for new research. Our participants are eager to contribute to future studies and we ask that researchers take up the opportunity to recontact the DecodeME cohort. By providing data access now, we are offering a cost and time effective way for other researchers to initiate valuable new studies into ME.

A participant from DecodeME explained what they think about their data being made available:

Participating in DecodeME has given me immense hope for the future of ME research. Too many of us have had our lives on hold for decades, waiting for breakthroughs that could change everything. We urgently need answers, and opening data access to other researchers and agreeing to being recontacted is a crucial step in that journey.

What is MRC doing to ensure data sharing takes place?

You might know a neighbour who never puts their recycling out, puts it out on the wrong day, or in the wrong container. Some local authorities look at your recycling to make sure that you are doing it right.

Similarly, we will monitor and evaluate data sharing for the research that we fund. We will also examine how we ask applicants to describe data sharing activities and how our funding panels assess data sharing activities.

We want to encourage research teams to make their data available. We can do that by providing funding and by factoring in research teams' data sharing track record during funding applications. It needs to be wider that that though. We want to increase recognition for all those that are involved in making data sharing happen, not just the people whose names appear on papers. This means working with research organisations to make it clear that for MRC data sharing is a top research priority.

A local authority might stop collecting your rubbish if you consistently refuse to recycle. Will MRC stop funding research teams that won't share research data? Wouldn't it be much easier to embed data sharing into research as default?

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