Tapping into large health-related data could help better manage chronic diseases

Data is the currency of today’s digital economy. Collected, analysed and moved across the globe, personal data has acquired enormous economic significance, with the value of European citizens’ personal data on track to reach €1 trillion per year by 2020.

If we want to better understand, manage, and prevent chronic diseases, then more and better data is vital. In particular, policy makers need data to inform their healthcare decisions and initiatives. Healthcare professionals need data to maintain and improve their service provisions. Researchers need data to develop new knowledge and create new solutions. And citizens need data to inform and empower their health choices and voices.

 So what do more and better data initiatives and outcomes for healthcare actually look like in practice? Below are two cutting edge examples from the public sector in Europe. The first is the Scottish Patients at Risk of Readmission and Admission (SPARRA) project, which has led to the development of a risk prediction tool for patients in Scottish hospitals. It predicts an individual’s risk of being admitted to hospital as an emergency inpatient within the next year. Overall, SPARRA has achieved great success, including 20% less emergency admissions, 10% shorter stays in hospital, and €16 million in cost savings for the Scottish healthcare system.

Another example is the Big Data for Better Outcomes (BD4BO) programme, which stems from the European Commission’s Innovative Medicines Initiative. BD4BO is exploiting the opportunities offered by big and deep data sources to develop more value based, outcome focused, and sustainable healthcare systems in Europe.

The potential advantages for public health providers, policymakers, and researchers appear clear: more and better data to understand the challenges and provide more efficient solutions to citizens.

But are there some bits of personal data that you wouldn’t want to share? Is your loss of privacy worth the trade-off for the greater societal good? And do you trust that your data are kept confidential and secure?

Some citizens are taking the fight to the big corporations, for example by exercising their right to be forgotten which removes Google search results associated with certain names. Yet stories of large-scale data breaches, hacks, cyberattacks, and leaks have become increasingly common.

To help manage and prevent chronic diseases, what stakeholders need is not just a larger quantity of data (more), but also a greater quality of data (better). This means data that are increasingly accessible, usable, inclusive, efficient, and shareable, but at the same time being private, trusted, secure, and ethical.

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