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How secure data sharing can help us treat dementia

Dementias Platform UK is a world-leading digital treasure trove, holding health data from millions of people, to help understand and treat dementia. Their one-stop shop gives researchers access to health data for dementia research and recognises contributions from researchers across the pay grade. Director Professor John Gallacher explains why it’s good for science and scientists.

Professor John Gallacher, Director of the Dementias Platform UK

Professor John Gallacher, Director of the Dementias Platform UK

In the UK, we’re fortunate to have a growing, rich resource of data from people that take part in studies which follow their health and lifestyle choices over time, known as cohort studies.

But there isn’t a single standardised way of storing and analysing this information. Without the right tools to search, interrogate and analyse this information, the data can seem impenetrable.

At Dementias Platform UK (DPUK) we have a solution – a place for researchers to access all the data they need to answer some of the toughest questions about dementia. We want the best minds to access the best data, regardless of their location. 

We focus on bringing scientists to the data so they don’t have to hunt for what they need or navigate the transfer of large and sensitive datasets to collaborators or colleagues. By bringing data from multiple cohort studies together into a secure, structured, robust – and fully-auditable – environment we make it easier for scientists to access, understand and analyse information that could hold the key to understanding dementia.

Pushing science forward

Despite the growing number of large-scale cohort studies, such as UK Biobank and Million Women, most UK cohort studies are too small to answer many of the emerging research questions for dementia on their own. That’s why we’ve developed data discovery and analysis tools within our system, to make it easier to pool and compare data from existing studies.

This is particularly important for dementia as we know it can develop 10 years before any signs or symptoms occur. We can use data pooled from multiple cohorts to identify any early changes in health, to develop treatments that delay the progression of the disease.

Making research life easier

We want to make life easier for researchers who collect data, as well as researchers who analyse data.

For the cohort research teams, we offer a service that manages access to data on their behalf. This makes life easier for the cohort research team as they don’t have to make repeated data transfers in response to access requests. But they do approve all data access requests, and so keep control of their data.

By bringing cohort data into one place, we can organise the data into a common format. This makes life easier for the analyst, who can access multiple datasets using a common set of conventions. Of course, researchers can apply for access to the original or curated datasets.

Rewarding contributions

Collecting this data isn’t an easy job and involves lots of people at all stages, from different disciplines. This makes it difficult for early career researchers, support scientists and infrastructure operators to receive due credit. It can also make it harder for those reading the research to understand where the data came from. Most of all we risk undervaluing the role of the cohort research teams who collect the data in the first place.

At DPUK we address this issue at two levels. First, whenever someone applies to a cohort team to access data, the cohort team is automatically considered an official collaborator. It can be represented in the author line of any research papers.

Second, for publications that involve use of our data portal, we will ‘badge’ the contribution of everyone in the team behind the article. We do this using the CRediT taxonomy. The issue of credit attribution is an ongoing debate and there is still much to do. For example, unless search engines cover the acknowledgements line, wider contributions remain virtually invisible.

The future

I think the type of data storage and management systems that we’ve developed will play an increasingly important role as datasets become larger, more complex and more sensitive. Scientists will require ever simpler and more convenient access to data. And funders will want reassurance that data are being used fully and responsibly.

There are technical challenges, including developing more sophisticated and intuitive data discovery and visualisation tools. We also need a change in culture, weaning analysts off the expectation that large and sensitive datasets should be downloadable to desktop computers.

Big data has brought us all to the beginning of change. It’s a culture change, which isn’t necessarily easy, but the rewards far outweigh the challenges. We hope DPUK will help more researchers access valuable data, leading to a greater understanding of dementia and the promise of effective treatments.

Learn more about the data portal and how to apply for access.

Dementias Platform UK is a multi-million-pound public-private partnership, developed and led by the MRC, to accelerate progress in dementias research. It is part of the wider connected community for UK dementias research. Find out more about MRC-funded dementias research.

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