Future Health has today published a short briefing paper on the role of health data in supporting economic growth. The briefing follows an expert roundtable, sponsored by Janssen and hosted by Future Health earlier this month. The work forms part of Future Health’s data and innovation policy workstream.

The full briefing is available here: FH Health data and economic growth roundtable themes and action points

Future Health has identified 5 main areas of action to ensure health data supports ambitions for economic growth:

• Narrative – a federated approach to data and analytics is the right way forward – but the Federated Data Platform narrative and focus need to shift to the ‘purpose’ of the platform, its benefits to patients and the operation of the service. The key ingredient for a thriving federation of NHS intelligence and data-intensive innovation is trust – the trust of the public, who are the data subjects, and to whom data controllers are ultimately accountable. The UK Government can only liberate the potential of health data – for NHS improvement and economic growth – with the consent of the UK population

• Power – Power must be devolved – this requires two things. First, clarification is needed on existing legislative responsibilities to enable Integrated Care Systems (ICSs) to press ahead with collecting and analysing the data on the population health needs of their areas. During the pandemic the Control of Patient Information (COPI) notice supported this. But the withdrawal of COPI has slowed progress. ICSs need to be the master data controller within the NHS. Clarification in the Hewitt Review of ICSs, a statement from DHSC and/or NHS England or a short guide of best practice information governance in the new NHS structures or some combination could be the method for ensuring this. Second, the centre needs to be more cohesive in its approach. A national data-action council co-ordinating the priorities from various agencies and working to empower ICSs could be a helpful and sharper force. This should have a Vaccines Taskforce style ethos of speed, energy and partnership, rather than a more typical Whitehall Committee structure

• Skills – Data (science, engineering, and management; or more broadly informatics) skills must be properly valued – ICSs should have a data-action lead on their board (CCIO/CDIO). NHS data analysts need to brought out from the fringe and into core planning and delivery at ICS level. Future workforce planning needs to ensure these roles are invested in and scaled up

• Investment – Investment in health data infrastructure should not be seen as exclusively about extra NHS funding. More needs to be done to secure other sources of public funding for NHS data infrastructure, through for example Government backed uplifts in science research funding through universities. The UK also needs to fix its clinical trial model. It is too slow and bureaucratic to recruit patients to trials. A template trial contract should be adopted which can be adapted by individual ICSs and NHS Trusts. Nationally, a federation of clinical trials intelligence across ICSs, linked to recruitment performance indicators, could speed the set-up of trials, and improve recruitment and retention. Improving the clinical trials environment will bring investment into health systems and have a wider regional economic benefit

• The future – The immediate priority is to clarify data policy priorities, devolve responsibility and tackle pressures. Consistent and multi-year investment must also flow to support the ambitions of wider population health and longitudinal data spanning different care settings beyond the NHS as well as wider public health data. There is a need to not only focus on the sick population but on ways to grow the 50-55% of the healthy/well population, and its importance to regional economies and social wellbeing. Civic, cooperative approaches to mobilising data into health innovation deliver impacts and attract public support for data-sharing, with tangible local benefits.

Future Health’s previous report on health data and the pandemic is available here: Cancer Data Report 2021 210125