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Power to the people: how data can empower citizens to lead healthier lives

Digital Technology, Healthcare, News 29/11/2018

Announcing the new Healthier Lives Data Fund – a new funding and support opportunity developed in partnership between the Scottish Government and Nesta.

The last decade has seen an exponential growth in the amount of data generated, collected and analysed to provide insights in all aspects of industry, and healthcare is no exception. Health data is being used to improve clinical decision making in cancer, reduce A&E waiting times, and fight against the spread of epidemics.

Many developments in Big Data have focused on making the healthcare system more efficient or supporting better decision making for staff, with better outcomes for people being a secondary benefit. This is changing amongst growing recognition that access to the right data and information is critical to citizen empowerment and true patient-centred care.

Today we are pleased to launch the Healthier Lives Data Fund – an exciting partnership between the Scottish Government and Nesta. The fund will invest in and support innovative digital technologies that make data available and useful to citizens to help them lead healthier, and more independent lives.

The potential of data

We are seeing rapid and innovative ways of gathering, analysing and presenting data to people – via technologies such as wearables, machine learning and chatbots. These present new and exciting possibilities in using data to support people.

Wearables and sensors are already being used in community and homecare settings to remote monitor patients, predict falls and help people living with a stoma. But could these technologies prevent people getting ill in the first place by supporting positive behaviour change? We know from our work on Good Help, that getting the right kind of support can help people identify their own motivations for change, and develop the confidence they need to act. It can be critical to achieving successful outcomes and empowers people to make an impact.

Data and information can support newly diagnosed patients at a potentially confusing and overwhelming time. For example, US-based Jonno Boyer-Dry was diagnosed with Stage IIB/IVA Hodgkin Lymphoma in 2014 at only 28 years old. He developed CancerChatbot to help organize the information and resources which would have helped when he was first diagnosed. The Facebook Messenger bot not only offers resources for patients, but also offers friends and families advice on what to say and how to help their loved one.

Data can also have a “triple win” of being useful not only to citizens, but also support shared decision making with clinicians, as well as feeding into research. OWise is a smartphone app and platform that enables women living with a breast cancer diagnosis to improve their understanding of their treatment plan and feedback their symptoms in real-time. This enables them to have a stronger voice in their own care, as well as providing rich data for other patients, clinicians and researchers. Data rich platforms such as Patients Like Me also allow people living with a disease to track and share their progress, learn from others in a similar position, and use the power of collective intelligence to improve their outcomes and contribute to clinical research.

Why are we excited about Scotland?

Scotland is uniquely placed to be a test-bed for people-facing, data-driven innovations in health and social care. The Scottish Government’s Digital Health and Care Strategy sets out a bold vision for how technology can support person-centred care. It aims to maximise the opportunities of digital technology to improve the health and wellbeing outcomes for people in Scotland.

As well as having a forward looking government, Scotland also has some other advantageous circumstances. Every citizen of Scotland has a unique patient identifier number known as the Community Health Index (CHI) that stays with them from birth until death. Combining this with a stable population of 5.5 million people and good electronic health records, means that the healthcare system is rich in longitudinal data. Furthermore, in 2016 the government had started to integrate health and social care services into one system combining Health Boards and local authorities into 32 Health and Social Care Partnerships. Integration is continuing with the ambitious plan to develop a National Digital Platform through which real-time data and information from health and care records are linked and available to all.

The Healthier Lives Data Fund is looking to support projects with up to £30,000 in funding as well as help to develop and test their innovation. We are looking for bold and ambitious people-facing projects that demonstrate innovative approaches to empowering Scottish citizens with data and information, and to showcase the potential of a new generation of data-driven, people-facing digital technologies.

Find out more about the fund and the types of projects we are looking for, or get in touch with any questions healthierlivesdatafund@nesta.org.uk.

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