Collaboration for a cure: harnessing the power of patient data

I am a classic example of a fitness fanatic who uses a wearable device to count my steps, measure my heart rate, and track my sleep pattern. Every day, I am armed with data gathered about my physical activity, alerting me as to whether I’ve been slacking in the gym or eating too many bags of crisps.

There is no doubt that now, more than ever, we live in a world where ‘big data’ is ubiquitous in influencing our daily decisions. However, since transitioning to work in the health data world, it has become apparent to me that the UK healthcare and research environment has still not caught on to this data-driven revolution.

Take a moment to think about the data that has been collected about you every time you have visited your GP, collected a prescription, or sat in the local A&E department for hours on end. The number of contact points you have with the NHS are endless, but do you really know the true significance of the data that is gathered about you?

The importance of our medical data can extend beyond our direct care. It can give insight into prevention, diagnosis, patient experience, survival, and quality of life. For example, routes to diagnosis data analysed by the National Cancer Registry and Analysis Service showed that 53% of high grade brain tumours were diagnosed as an emergency in 2013, and, of those, just 28% survive one year post diagnosis.

But, as if that’s not enough, data is also crucial in accelerating medical research, and yet it can be challenging for researchers to access patient clinical data as this involves a grueling application processes to a number of different data goliaths, alongside a handsome price tag. This, in turn, can mean many research projects are delayed and, more often than not, many can’t even make it off the ground.

The lack of available, accessible data means researchers may only be tapping on the surface of the data world, but in reality, a whole data ocean is out there waiting for them to swim in.

However, the lack of data sharing has not gone wholly unobserved.

Last year, Life Science’s champion, Professor Sir John Bell, wrote a report providing recommendations to government on the long term success of the life sciences sector in the United Kingdom. One of the core recommendations is to ”establish two to five Digital Innovation Hubs providing data across regions of three to five million people” with the intention of rapidly enabling researchers to engage with a rich, meaningful dataset.

A reinforcing action of this recommendation particularly stood out to me as a charity employee: “National registries of therapy-area-specific data across the whole of the NHS in England should be created and aligned with the relevant charity.”

I don’t disagree that medical charities are paramount in driving initiatives like this, but is it not the voices and actions of the patients they represent that have the greatest power to influence data sharing?

Last year, we conducted a survey across 270 patients, which highlighted that 97% of those living with a brain tumour would be happy to share their data, not only to accelerate the development of new treatments and diagnostics, but also to help inform other patients in a similar position. Armed with this information, we developed BRIAN (Brain tumouR Information and Analysis Network), a platform which will enable us to access patient medical records through the power of patient consent.

This ambitious initiative will create a centralised hub of information from which patients and carers can learn from the experiences of others, whilst also facilitating researcher and clinician access to medical and quality of life data. BRIAN will be one of the first of its kind in the world.

There are also other disease-specific registries run specifically by medical charities across the United Kingdom, some of which are directly embedded into the system, and have been facilitating data collection and sharing for over 20 years. The benefits of such registries have been remarkable, in some cases providing enough data to support the development and approval of new treatments.

Nonetheless, data sharing is not the only obstacle preventing the use of healthcare data to reach its full potential. Primary and secondary care data is recorded within disparate NHS systems and comes in a range of formats (paper and electronic) making it difficult to build a full trail of a patient clinical record.

Beyond primary care, digital systems are more diverse and fragmented making interoperability much more difficult and, consequently, data can lack quality and clarity. Since the implementation of electronic health records in certain NHS trusts, and deployment of the Five Year Forward View, there has certainly been a data explosion. However, this data is only truly meaningful if it is structured and coded to support real-time clinical decision-making.

With the NHS being such a fundamental contributor of patient medical data, it is vital for it to create a sustainable environment through which the collection, aggregation, and analysis of the information it holds can underpin both effective patient care and the wider life sciences research strategies.

So what does the future of patient medical data look like in the United Kingdom?

I believe that medical charities are excellently positioned to create the infrastructure needed for the sharing of patient clinical data and to facilitate its collection for the purposes of improving delivery of care and accelerating research.

However, this work will only be driven through collaboration with the NHS and other governmental organisations to leverage barriers to data access, whilst ensuring that the patient’s wishes are at the heart of it all.

Featured image credit: Cold, Weather, Winter by StockSnap. CC0 via Pixabay.