Data Privacy Health

The critical role of personal data in research

Knowledge has always equalled power, and never more than in healthcare where a detailed understanding of symptoms, treatments and side effects becomes the fuel for greater and more effective treatments and medicines.

Research is absolutely critical for finding cures and treatments for sickness, and data is, in turn, absolutely critical to research. Relevant data, accurate data – but above all lots of data.

Medical records and self-report data captured through surveys have historically been the main source of this, but the landscape is changing radically. Increasingly, health data is being generated by individuals rather than traditional healthcare settings.

This is because today we live in a data-rich world where information about our physical, physiological, genetic, mental, economic, cultural or social identity is being generated constantly as we go about our lives. Many apps now exist to capture and track different aspects of this. When these are combined, and shared on a consented basis with researchers, they offer powerful insights.

Bringing together this rich tapestry of data from across an individual’s life is undoubtedly the future of research and ultimate enabling of vastly increased prevention, early detection and precision medicine for a multitude of diseases and conditions.

There have already, for example, been novel use cases looking at how people’s search habits can predict diabetes, or how the way in which they enter their pin can detect the onset of mental decline. In some areas, patient groups have come together to do their own research, with the type 1 diabetes community being particularly active.

This is about more than just the potential and desirability of personal data sharing, however – there is public will for this shift, too. A study by Experian showed that 70 per cent of consumers would share more data if there was a perceived benefit. When looking more specifically at research, a study published in NEJM looking at participants perceptions of data sharing also showed that 93 per cent of participants were very or somewhat likely to allow their personal data to be shared with university scientists.

At digi.me our private sharing™ technology puts individuals at the heart of their data and enables them to gather it up and share it on their own terms – including for research. Everything from social medical, banking, fitness and health records can be brought together and shared, enabling new models and potential for research and innovation.

UBDI – which stands for Universal Basic Data Income – is one such research company that is leading the way in this area. Built on digi.me, it is focused on giving researchers the tools they need to access better, richer and more accurate data and insights permissioned directly from the verified audience of their choosing. Individuals are given a reward in return for their engagement – a model which is applicable to health in the form of better care and outcomes.

Dana Budzyn co-founder and CEO of UBDI said – “UBDI allows people to profit by sharing anonymised, aggregated insights from their data in a world which historically individuals and their data have been monetised often behind their back. This has led to an imbalance in power as well as privacy and trust issues not to mention the poor quality data.”

There is no question that there is huge growth in this area and with Boston Consulting Group (BCG) estimating the personal data eco-system to be worth trillions alone it is right that individuals have a part in this.

Dana continued: “UBDI changes the model to provide a fairer more transparent model which works better for individuals and originations alike. We’re seeing fantastic growth in areas of market research and we are now moving into health and have already embarked on health-related studies including a cannabis study.”

But along with greater data sharing, the issue of trust naturally arises – especially in the light of previous scandals, such as the NHS reportedly breaking UK data protection laws when it shared 1.6 million patient records with Google DeepMind in 2017, and the more recent controversy around patient data from GP surgeries being sold to US and other international pharmaceutical companies.

While many would be willing to share their data under the right circumstances, the key is to enable individuals to participate in a value exchange while addressing any concerns or anxiety about privacy and security, and doing so in a scalable and repeatable manner.

By securely equipping individuals with their data from across their lives, digi.me enables them to build up a longitudinal lifelong record, including retrospectively, which they can then use for the purposes they want. If we then provide individuals with a means to safely and securely share this data, this benefits everyone.

It is without question a very exciting time for health and research and with the rapid growth in AI and machine learning technology over the last few years it seems we are on the cusp of a revolution of new and privacy-centric mechanisms allowing us to do more with our data.

Digi.me has the technology and the vision, as well as a developer-ready SDK, to enable ethical data innovation in this area, and welcomes anyone with ideas to come and build with us. Get in touch here to find out more.