Future Care Capital has launched its first policy paper on health and care data with the support of Dr Alison Powell from the London School of Economics, a leading academic in data ethics and its application across society. The report sets out how the Government can grasp the opportunity to position our country as a global leader in harnessing the power of data and emergent technology to transform health and care provision.
The direction of Future Care Capital’s policy paper is clear. Using data more strategically can empower individuals to better manage a health condition, raise care standards, impact the experience of service-users and assist health and care professionals in commissioning the most effective interventions. By shifting the Government and sectors focus on data there is a real opportunity to develop the next generation of medicines and treatments, enable innovators to deploy leading-edge machine learning techniques and aid ‘cognitive service’ developers to revolutionise well-being.
It is Future Care Capital’s belief that a concerted effort to unleash the potential of health and care data could significantly improve outcomes for everyone in our society.
The report, Intelligent sharing: unleashing the potential of health and care data in the UK to transform outcomes, explores how the UK might support data-driven innovation and enterprise to deliver such a transformation. It also makes plain that to achieve this we need to be bold and blaze a trail in the development of data ethics and rights to proactively build trust and safeguard everyone’s privacy.
Through rigorous evidence-based research, Future Care Capital have developed several recommendations that look at the national context and enabling responsible data sharing to build public trust and push boundaries. The charity wants to shake up the way health and care data is currently managed. Some of the key recommendations include:
Investment in skills and data-driven business clusters across the country – Future Care Capital urges the Government to establish data-driven business clusters for new health and care enterprises. It is important to encourage and support early stage health and care start-ups and small and medium-sized enterprises to succeed. The clusters would provide skills training to help prepare the future workforce for the increase in demand for data-related job opportunities.
A National Health and Care Data Donor Bank – the charity believes that a trusted intermediary for individuals consenting to donate their health and care data for the purposes of research and innovation would positively impact outcomes and support professionals to transform important services. The report envisages that the Data Bank would be a national asset held up as an international exemplar in what they have termed ‘data philanthropy’.
A health and care data privacy shield for the United Kingdom – the United Kingdom will adopt the General Data Protection Regulations it has developed with other European Union member states in 2018, and negotiate independent data sharing arrangements with countries outside the European Economic Area following our exit negotiations with the European Union. Future Care Capital recommend the Government develops a dedicated health and care data privacy shield applicable to future international trade discussions to ensure that the UK has appropriate provisions in place.
This report’s balanced and positive vision is calling on the Government to push the boundaries and develop a refreshed strategic health and data plan for the country. This can be achieved by establishing a new nationwide digital contract, characterized by ‘intelligent sharing’, safeguards for everyone’s privacy through robust ethics and laying the right foundations for an ambitious infrastructure programme that will future-proof a data advantage across the United Kingdom – embedding the principle of ‘data for good’.
Future Care Capital is a charity committed to engaging everyone in the design of health and care provision. The charity’s mission focuses on delivering improvements for those in receipt of care. It is by being more strategic and planning for the future that we can use data to change our approach and build health and care services that respond to future need
Bringing to the public a National Health and Care Data Donor Bank and allowing Artificial Intelligence capabilities to be developed and employed for public benefit and with transparent governance would mark a significant step forward for the UK, building on the past operations of the UK Biobank. Planning carefully for the creation of data-based resources so that public trust can be maintained is of utmost importance, and this report suggests some creative and insightful ways forward Dr Alison Powell, Programme Director, Data and Society Programme, Department of Media and Communications, London School of Economics and Political Science