ZPB’s aim has always been to increase collaboration, accelerate innovation and transform healthcare. We don't believe any one sector or industry can do this alone, which is why we work across the three key pillars of healthcare services, technology and pharma. We look for unifiers across these sectors: areas of collaboration, shared goals and mutual gains. How can industry be true partners within the local NHS? What should we prioritise to ensure this is done in a meaningful way that demonstrably improves the health and wellbeing of all parts of society? What does NHS England need to do to evidence the effectiveness and attractiveness of the UK life sciences market?
Data is a golden thread that runs this all of this. Let’s call it a unifier.
One of the ideas laid out in the Life Sciences Vision is to double down on the areas where we have competitive advantage – e.g. NHS scale, world-class genomics and data infrastructure; and to comprehensively address the areas where we are weak, such as the adoption and scaling of technology and innovation. In so doing, we will be better able to improve health and economic inequality, which as we know, are linked.
At our latest roundtable we were joined by Dr Claire Bloomfield, Deputy Director, Data For R&D, Centre for Improving Data Collaboration at NHS England, and guests from across pharma, tech and health services to discuss the NHS’s Data Saves Lives strategy. Given the budgetary and inflationary pressures facing the UK, we planned to look at what our immediate priorities should be to have the most impact in the shortest time.
We’re experiencing a time of great change, the NHSE/NHSD/NHSX merger brings new opportunities and challenges and the establishment of Secure Data Platforms (SDEs) will change the way the NHS uses data for research and service development.
It is useful to make clear the distinction between two data environments. Put simply, the Federated Data Platform (FDP) is primarily for use in population health planning, service development and operational improvements. There are five use cases centred around population health and person insight, vaccination and immunisation, elective recovery, care coordination, and supply chain. The FDP is headed up by Ming Tang, NHSE’ Chief Data and Analytics Officer. There is a good summary here.
The SDEs on the other hand, are being created to give approved users access to health data for the purposes of R&D, without them needing to receive a copy. Use cases will be created to justify use of the data. These have a separate budget and one which for the first time ever, comes directly from the NHS’s budget. It is the first time that NHSE has ever itself invested in data at this scale, previously having relied on the likes of HDR-UK to lead on these initiatives.
To date, 11 SDEs (sometimes referred to as data museums) have been awarded funds to get off the ground. Check out an interesting blog on this topic here. It is clear from the pharma industry’s feedback that it is critical for the success of this initiative (within 12 – 18 months) as a means of maintaining the UK’s position on the global stage. There is a necessity to have the opportunity to build datasets at scale and to understand what the potential use cases could be.
This leads us to where we should prioritise. We have budgetary pressures, challenging macroeconomics, and limited time - so what do we prioritise? There are many conflicting “must haves”: do we build use cases that ensure that the research data is not over curated? Do we prioritise making sure these data sets and the research environment reflect back into operational reality and clinical practice (editors’ cheat: surely this is a must). How – or what - do we demonstrate or signal to global pharma or market investors that progress is being made? What does progress look like?
We discussed starting with the basics and making sure we get this right, and these basics were identified as:
1. Strengthening regional data collection
ICSs will be given autonomy over data collection in their area, encouraging specialisation and collaboration. NHSE should continue to encourage data collection and refinement at ICS level and have measures in place to ensure consistency across regions and scale upwards when necessary.
Coherent coding and consistency are critical – it was acknowledged how inconsistent clinical coding is, and that it hinders widescale use, analysis and extrapolation of data. We need better education with clinicians about why this is so important.
2. Gathering use cases
Service wraparounds and clinical and academic expertise will determine where datasets focus, but use cases are critical to ensuring sure we’ve correctly identified and prioritised these. In order to get these basics right, industry (pharma, tech, service providers) must have the opportunity to articulate what it needs to use the data for.
3. Developing commercial principles and value sharing frameworks with industry to allow better negotiation on data access
The NHS is collaborating with pharma via the Health Data User Group to put principles in place and discuss specific features of the SDEs that would be useful for pharma. NHS and pharma need to collaborate on putting forward defined “use cases” to ensure data in the museums is usable, useful and not far removed from clinical practice.
4. Demand signalling
An admittance that the NHS is not good at communicating what it wants and its priorities, even though these can change.
The NHS will create mechanisms to better communicate what they’re looking for from industry partners. Their immediate priorities are cancer, mental health and cardiovascular disease but there will be further sub-priorities within these.
5. Sharing open-source data
Attendees expressed an openness for collaboration, information governance, and data collection for the greater good of patient care rather than operating in silos. Collaborating across organisations and industries is the only way the data strategy can become realised and have an impact.
Following our round table discussion, we (ZPB) are:
looking to define specific use cases for SDEs
continuing to bring NHS and the private sector together to drive further collaboration
Get in touch if any of the topics discussed are of interest. We would be keen to talk to you.
Carwyn Jones - Chief Commercial Officer firstname.lastname@example.org