The innovative power of open health data

open-health-dataThe past few years have seen the tremendous growth in the UK’s Biobank system.  The project, which was created by the Wellcome Trust medical charity, Medical Research CouncilDepartment of HealthScottish Government and the Northwest Regional Development Agency, has recruited hundreds of thousands of people to donate their medical records with the aim of improving medical research and understanding of our bodies.

There have been recent moves to try and fundamentally connect up the Biobank with the National Health Service so that patient records are automatically, and anonymously, added to the service.

The project is impressive, not least because of the various concerns over privacy from patients, and commercial/professional concerns from companies and researchers that had to be overcome for the Biobank to get where it has.

There is also no guarantee that having this vast repository will actually help the R&D process.

“Simply making large amounts of data accessible is good for transparency and trust,” says Craig Lipset, Head of Clinical Innovation at Pfizer, “but it does not inherently improve R&D or health research. We still need important collaborations and partnerships that make full use of these vast data stores.”

How open data helps research

Whilst there is certainly evidence that such collaborations could be improved, there are also encouraging signs that those improvements are underway.

A recent study published in Lancet from researchers at the University of Nottingham and the University of Leicester made some telling insights into the impact smoking has on our body.

The study used genetic data from the Biobank to identify genetic differences that may impact the probability that a smoker will develop lunch issues.

The hope is that the findings will underpin better treatment of a range of lung diseases, including chronic obstructive pulmonary disease (COPD).

The scale of the Biobank allowed the researchers to tap into the data of some 50,000 people who were selected on account of their lung health.  By comparing the genetic material of each person and their smoking history, they were able to explore for any differences.

The team were able to find parts of the human genome never before associated with a person’s lung health, as well as five sections of DNA shown for the first time to relate to being a heavy smoker.

The team believe they’ve discovered why some people can retain a healthy lung despite smoking, whilst some suffer from ill health despite living a clean lifestyle.

“The drugs we use to prevent or treat diseases target the proteins in our bodies, and our genes influence the production of proteins.  Understanding how the genes are involved in disease or in addiction to tobacco, can help us design and develop better and more targeted treatments that are likely to be more effective and have fewer side effects. UK Biobank was a bold vision when it was set up and this study shows just how much can be achieved by using the resource. We hope to get much further detail when genetics information on all UK Biobank participants becomes available next year,” the authors say.

The next step is to ramp up the study to include all 500,000 users in Biobank.  It’s expected that this cohort will be available sometime in 2016.

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