Future Care Capital seeks a step-change in health and care and believes that a concerted effort to unleash the potential of health and care data could significantly improve outcomes for everyone in our society. This report explores how the United Kingdom (UK) might support data-driven research and innovation to transform health and care. It also makes plain that, to achieve this, the UK needs to blaze a trail in the development of ‘data ethics’ to proactively build trust whilst safeguarding individuals.
In brief – our key recommendations
National context: enabling responsible data sharing and building public trust
- Empower the Information Commissioner’s Office to tackle data-driven exploitation and discrimination to build public trust.
- Introduce new sanctions to tackle the re-identification of data subjects from anonymous data sets, where consent, legitimate interest or contract is lacking.
- Invest in technologies to positively impact social care services and task the Care Quality Commission with championing the digitisation agenda, including planning for a data-driven inspection regime to improve standards.
- Streamline information governance modelling for Integrated Digital Care Records to expedite data sharing at the local level across health and care organisations.
- Increase investment and support for data controllers to unleash health and care data in a standard and anonymised form, where there is a value in secondary analysis by third parties.
- Expand the opportunity for data subjects to contribute health and care data to integrated records and other data sharing initiatives.
Pushing the boundaries: creating a culture of data philanthropy in a digital Britain
- Establish a new National Health and Care Data Donor Bank, to coordinate data from the public and help improve the alignment of research to clinical need.
- The Ministers for Digital Economy and the Third Sector, working in conjunction with the Open Data Institute and NHS Digital, business and the third sector, should develop a suite of tools to stimulate ‘data philanthropy’ in the UK.
- Introduce a national Government programme to pilot the development of new health and care Data Cooperatives, Data Communities and Data Collaboratives to promote a culture of data philanthropy through the demonstration of tangible health and care outcomes delivered by a range of ‘trusted vehicles’.
- The Government should explore the development of a ‘gift aid’ style scheme for health and care data, encouraging individuals to make health and care data donations to better enable research and innovation.
Establishing a health and care data advantage: investing in skills, business and infrastructure
- Establish data-driven business clusters for new health and care enterprises backed by Government. These clusters should also offer skills training to help prepare the future workforce for the increase in demand for data-related job opportunities.
- The Government should explore the scope to introduce tax and other incentives for businesses prepared to enter into Joint Ventures with a National Health and Care Data Donor Bank to help place future services on an affordable footing.
- The new Chief Data Officer and National Data Guardian should be tasked by Government with contributing to the development of a strengthened and/or dedicated ‘data privacy shield’ for health and care data, applicable to any future trade negotiations outside Europe, to safeguard the public whilst improving the UK’s competitiveness.
- The Government should support the establishment of ‘Living Labs’ to encourage innovators and entrepreneurs to develop new technologies to transform health and care outcomes. A ‘Living Lab’ could comprise of private dwellings, a residential care home and/or connected streets, and would involve the deployment of technologies associated with the Internet-of-Things.
About the Authors
Annemarie Naylor MBE is the Director of Policy and Consulting at Future Care Capital. She studied Government and Sociology at the University of Essex. For a large part of her career, Annemarie has work in public policy and economic development working with local, regional and central government.
Emily Jones is a Policy and Research Officer at Future Care Capital. She studied at the London School of Economics and Political Science where she achieved a degree in Social Policy. Emily was previously a Research Assistant at the Centre for Analysis of Social Exclusion.
We are very grateful to Dr Alison Powell for her insight and comments provided on a draft of this paper as well as for writing the Foreword. The team at Anthony Collins Solicitors LLP provided valuable legal input to inform our research. The contribution of individuals on behalf of the Leeds Care Record, Dorset Care Record, Hampshire Health Record and Connected Yorkshire has also been invaluable in the production of this report.