Taking Next Steps to Harness the Value of Health and Care Data
Future Care Capital has produced a Discussion Paper about the next steps that need to be taken to better harness the value of health and care data. We reflect upon policy developments to stimulate debate about where they might help or hinder progress in improving outcomes for individuals, critical infrastructure and services, as well as in delivering economic development goals and bolstering the sustainability of health and care provision. We also present the findings from primary research we have undertaken to better understand the demand for data that health and care organisations control for research or commercial purposes.
Our research found that the ability of health and care organisations to make the most of data varies across the country, which could be at odds with the Government’s intention to maximise the value of health and care data whilst ensuring a fair distribution of associated benefits results.
Our discussions with key stakeholders also highlighted that Government should recognise and put in place measures to better harness the benefits that could flow from operational data, insights and tools – which could be:
- better utilised in the design, commissioning and delivery of services impacting individuals’ care and population outcomes;
- more rapidly, securely and less controversially deployed by public bodies than patient-identifiable data and their derivatives to stimulate innovation and the creation of new businesses and employment opportunities; and
- made more accessible to enhance competition amongst existing and prospective suppliers, with the potential to realise efficiencies and improve productivity.
We acknowledge attendant sensitivities surrounding privacy, ethics and the need for appropriate regulation whilst underlining that the data harbours significant clinical, social, economic development as well as commercial value. A national strategy or policy framework must strike a balance between them and be underpinned by radical transparency so that applications to access and use data by third parties for research or commercial purposes is better understood. We also recommend that individuals be given a greater say and, potentially, a formal stake in whether and how the value of data about them is used in future.
Our Discussion Paper is intended to spark a debate about harnessing the value of health and care data in the public interest and for public benefit. As such, we invite further discussion of the points outlined below from individuals, front line professionals and government, as well as innovators and commercial entities.
- What do we mean when we talk about the ‘fair distribution of benefits’ from data-driven innovation in health and care?
- How might we reconcile the tension between the local use of data to develop intellectual property and the derivation of benefits at a national level?
- How will we ensure individuals are able to understand and have a say and/or stake in whether and how the social, economic development and commercial value of health and care data about them is being harnessed – what might a readily intelligible and trustworthy feedback loop look like?
- How is the control/ownership of operational data, insights and tools treated in the course of procurement exercises undertaken by publicly funded and accountable health and care organisations?
- Is there scope and utility in seeking to introduce national standards for the operational data, insights and tools that are controlled, generated or developed through out-sourcing?
- What benefits could flow from the development of a ‘digital twin’ for health and care infrastructure and services integral to it?
- If the commercial value of data, insights and tools controlled and/or generated by health and organisations cannot be determined robustly, what criteria might be applied to determine the ‘tipping point’ beyond which their depreciation is anticipated?
- What steps does Government intend to take in order to protect, enhance and deploy UK health and care data assets such that the Government maximises their clinical, social, economic development and commercial value as well as guarding against depreciation?
In the interests of transparency, we are publishing the data we solicited in the course of our research, which we encourage others to re-use and re-mix for private and non-commercial purposes in keeping with their terms and conditions of use.
Download the data – Analysis of Intellectual Property Policies held by NHS Trusts in England
Download the data – The Shelford Group, Financial Analysis