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Why health data are like teenagers

Data has already revealed its enormous potential to transform our lives, and we are now at a critical juncture in deciding what we should do with data on our health. Much of the future of healthcare and medical research rests on resolving difficult trade-offs. These include the investment needed to capture, process and analyse data within a healthcare system already straining from rising costs; deciding on who owns and manages data about our own health; and how we build new skills and technology to collect and interpret this data in a world still creaking with old and often incompatible systems. Making the best use of data is vital to every health institution across the UK, not least health charities, who can play a valuable role in brokering some of the difficult decision making.

These debates and the importance of data for patients and researchers were captured at AMRC and ABPI's Patients First conference on 28 November 2016. Patients First gathered a broad range of attendees, which reflected the scope and scale of the challenges discussed.

The current state of health data is like that of a teenager: growing like a weed, revealing both brilliant insights and unintelligible rubbish and in need of careful parenting to guide it through new territory. Given the right nurturing environment, incentives and clear boundaries, digital health can and should grow to its full potential.

The word ‘data’ is not likely to feature in a conversation with your GP, yet in reality data underpins every interaction between a patient and a clinician. The exponential rise in the use of health data in research and clinical settings throws up new ethical conundrums and opportunities. It is critical that the charity sector carries the citizen voice in shaping this brave new data world.

The #datasaveslives campaign is one contributor to these discussions on data, and aptly named. Failing to link up data has real world consequences, such as the tragic case of Tamara Mills. This 13-year-old from Newcastle sadly died from an asthma attack in 2015. Despite seeing GPs and attending hospital 47 times in the four years leading up to her death, her symptoms were treated as isolated events and no-one joined up the dots. Had her deterioration been properly identified through linked-up health records, she might still be with us today.

Asthma is a condition that needs much more research to better understand its causes and triggers and data sharing will help deliver those insights.

We’re already witnessing an acceleration in technology to help manage asthma, as Asthma UK’s recent Connected Asthma report outlined. Yet many of the opportunities we’re glimpsing, such as apps supporting the self-management of asthma and electronic alerts for prescribing and emergency admissions are being held back by the current lack of data linkage.

The charity sector has a crucial role in the communication of the benefits and potential of data collection and sharing to people. Asthma UK is a member of the Richmond Group, who is publishing the My data, my care report in the New Year. My data, my care uses tangible examples to highlight just how essential personal health data is to current healthcare and research, and how much potential there is. It also highlights the need to improve data literacy among the public, including what personal data is collected through their use of the NHS and enabling a basic understanding of the purpose and benefits of data sharing. We’re at a critical point in this conversation about what to do with data, and we must not lose sight of the multiple benefits that health data sharing will bring. Like teenagers, managing this data might be frustrating, difficult and take time and patience, but it gives us hope of a better future.