Report by Future Care Capital: “….Data is often referred to as the ‘new oil’ – the 21st century raw material which, when hitched to algorithmic refinement, may be mined for insight and value – and ‘data flows’ are said to have exerted a greater impact upon global growth than traditional goods flows in recent years (Manyika et al, 2016). Small wonder, then, that governments around the world are endeavouring to strike a balance between individual privacy rights and protections on the one hand, and organisational permissions to facilitate the creation of social, economic and environmental value from broad-ranging data on the other: ‘data rights’ are now of critical importance courtesy of technological advancements. The tension between the two is particularly evident where health and care data in the UK is concerned. Individuals are broadly content with anonymised data from their medical records being used for public benefit but are, understandably, anxious about the implications of the most intimate aspects of their lives being hacked or, else, shared without their knowledge or consent….
The potential for health and care data to be transformative remains, and there is growing concern that opportunities to improve the use of health and care data in peoples’ interests are being missed….
we recommend additional support for digitisation efforts in social care settings. We call upon the Government to streamline processes associated with Information Governance (IG) modelling to help data sharing initiatives that traverse organisational boundaries. We also advocate for investment and additional legal safeguards to make more anonymised data sets available for research and innovation. Crucially, we recommend expediting the scope for individuals to contribute health and care data to sharing initiatives led by the public sector through promotion, education and pilot activities – so that data is deployed to transform public health and support the ‘pivot to prevention’.
In Chapter Two, we explore the rationale and scope for the UK to build upon emergent practice from around the world and become a global leader in ‘data philanthropy’ – to push at the boundaries of existing plans and programmes, and support the development of and access to unrivalled health and care data sets. We look at member-controlled ‘data cooperatives’ and what we’ve termed ‘data communities’ operated by trusted intermediaries. We also explore ‘data collaboratives’ which involve the private sector engaging in data philanthropy for public benefit. Here, we make recommendations about promoting a culture of data philanthropy through the demonstration of tangible benefits to participants and the wider public, and we call upon Government to assess the appetite and feasibility of establishing the world’s first National Health and Care Data Donor Bank….(More)”