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:
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.
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.