We have found that the ability of health and care organisations to make the most of data varies across the country and has warned that this could be at odds with the Government’s stated intention to ensure “a fair allocation of benefits” results from data-driven innovation.
In a new report, Taking Next Steps to Harness the Value of Health and Care Data, we share our analysis of data obtained from a Freedom of Information request issued to NHS Trusts in England about the number of times third parties sought access to data they control for research or commercial purposes, the types of organisations that made such applications, and the proportion that resulted in a commercial or financial relationship.
NHS Trusts are not currently required to record information about such applications in a consistent manner – the report sheds light on their distribution and invites further discussion about the implications for associated benefits which could include:
Our analysis found that Trusts in the West Midlands, London and the North West received more applications to access the data they control than other regions during the period it asked about, whilst around one third of Trusts claimed not to have received any such requests from external parties. Only 50% of NHS Trusts appeared to have developed an Intellectual Property policy to help guide them in sharing the value created by researchers and entrepreneurs who make use of the data they control or generate.
The report acknowledges 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. Its authors argue that a national strategy or policy framework must strike a balance between them and call for radical transparency so that applications to access and use data by external parties for research or commercial purposes is better understood. The charity has also recommended 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. We invite further discussion of the key issues outlined in our Report from individuals, front line professionals working in health and care organisations and government as well as innovators and commercial entities. Annemarie Naylor MBE, Director of Policy and Strategy, Future Care Capital,