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Data sharing discussion at the Labour Party conference

Our Policy & Public Affairs Manager, Cameron Miller, writes from the frontline of the party conference in Brighton

Data will play a huge role in society and industry in the 21st century and the big decisions need to be decided in partnership with the public.

How should we utilize, share and manage data to accelerate research? How will individuals be appropriately informed and protected?

These were the big questions discussed this morning at the Labour Party Conference in Brighton, where I attended an AMRC, ABPI, BIA and BIVDA organised event entitled ‘Data and digital tool for better healthcare and world leading R&D’.

As was pointed out during the discussion, perhaps the sector needs to develop more accessible language to entice broader public debate on the subject of data usage.

However, the debate was expertly chaired, well informed and absolutely essential to the future of healthcare in the UK and for projects like BRIAN, our databank that will help put patients in the driving seat of the care they receive.

Data sharing is already here

There were several areas identified where this would help and delegates listed excellent examples where data sharing has helped the treatment of patients, identifying patterns or causes of certain incidences of diseases that may have gone unnoticed without the patients sharing information about themselves.

The sharing of data is already all around us, for example in the fitness apps we all use each and every day to monitor the amount of steps we are taking (or not in my case) or the distance or level of exertion during an exercise session.

This can be transformative for some, as it helps monitor serious health conditions after diagnosis for both patients, and sometimes parents, who have more information at their fingertips than ever before.

We know from our own data that 97% of those with a brain tumour said they’d be happy to share their medical data to help accelerate research.

The Wellcome Trust also found that four in five of the public would allow their medical records to be used in a research study if they were anonymised.

Of course safeguards need to be in place, but nobody is suggesting otherwise; this is about getting the balance right between protecting people and helping them to the best possible outcomes available.

Every patient is a research patient

The economic argument behind this is substantial too, as the UK has an entire industry contributing to the UK economy on a huge scale.

A study by PwC showed that in 2015 UK life sciences contributed £30.4bn to the economy, with 482,000 UK jobs supported by it.

The sector can thrive if we get the provision of data legislation right in this country, but will perish if we get it wrong.

This work will be driven by everyone coming together to discuss it and thrashing out how this needs to work, and in truth, this will affect everyone. Everybody is a patient and everybody should know how data will be used, shared and protected.

Following an enlightening discussion this morning, we will continue to work with partner organisations, and our community to ensure patient voices are at the heart of this debate.