Understanding the value of healthcare data

Annemarie Naylor is Director of Policy and Strategy at Future Care Capital and has a particular interest in data-driven innovation and the deployment of new technologies. She has been supporting the NHSX Centre for Improving Data Collaboration to explore how we realise the value of health data. NHS organisations are encouraged to complete our health data collaboration research survey to inform this work.

Annemarie Naylor

What do we mean by the value of healthcare data? 

I think it’s important to start by recognising that there are different types of ‘value’. Values are different for people in different positions, at particular times and in accordance with their roles. So, whereas the value of healthcare data to an individual living with a particular condition is going to centre around their own health and wellbeing (or research to develop new treatments and technologies for people ‘like them’), it is different when viewed from the point of view of a dataset or datasets being used by a clinician, researcher, commissioner, provider, pharmaceutical company, tech developer or policymaker for their purposes. 

Investing in NHS data assets and digital capabilities has the potential to reap rewards that go far beyond healthcare - it could also significantly contribute to local economies, helping to drive growth and create employment opportunities.

That’s why our work talks about the clinical, social, economic development and environmental value of health data as well as its financial and commercial value.

Does this present a conflict of interest when trying to realise the value of data?

I think that the challenge organisations face often comes from the legal provisions which underpin data protection, information governance and, crucially, organisational objectives. These often function to pitch individual data subjects and public/corporate bodies ‘against’ one another. There is a requirement to protect personal data weighed carefully against the value of commercial opportunities, but without proper explanation of how relative value can be calculated. This is something we have explored in detail in our work on this topic for the National Consortium for Intelligent Medical Imaging (NCIMI). 

Crucially, we need to agree and be explicit about what value (types and amount) should accrue to individuals and different elements of the system, ecosystem or ecosystems – and what value should be ‘protected or preserved’, ‘unleashed and shared’ or ‘amassed then reinvested or redistributed’.

Can healthcare data help rebalance the UK’s economy?

In Future Care Capital’s joint report with Reform, ‘Manufacturing the Future’ you asked whether healthcare data could help rebalance the UK’s economy. What areas do you think the NHS needs to focus on in order to drive this?

Our report was published at a time when the threat and significance of COVID-19 was only really beginning to register - a time when we anticipated significant investment in the levelling up agenda would be forthcoming in the Chancellor’s April Budget. Clearly, events changed all that and, last autumn, the multi-year Spending Review that so many of us had hoped for succumbed to a similar fate, albeit we warmly welcomed the boost to investment in R&D it contained. The thinking in our report is nonetheless still helpful.

A major barrier to harnessing the value of healthcare data to develop new drugs and treatments is the lack of good quality and well-structured data - one which could be addressed through national investment and support for the creation of a new UK data curation or advanced data services industry. Investment could flow from the Treasury toward ‘left-behind’ communities, forging strong links between them and existing centres of excellence to help rebalance the UK economy, unless the optimum solution is, instead, to invest in the collection of high quality data at source. In doing this, we would also need to be clear on how such return value would be apportioned or shared among those stakeholders. These are ideas that warrant further exploration by the Centre for Improving Data Collaboration (amongst others).

A deeper understanding and mapping of the investment that is available and where it is flowing is key to understanding the drivers behind any inequities in the system and how we might want to address them. For example, do we want to redirect finance to those who don’t traditionally lead or engage in innovation? Or, do we support already active hubs of innovation to increase their efforts and bring in others as collaborators? Or, is it investment in the wider health ecosystem in particular places (rather than the healthcare system per se) that is required? We also need to understand where and why money isn’t being spent on innovation. With the shift to Integrated Care Systems, I think there is a big opportunity to nurture collaboration and consider how data-driven research and innovation can support wider economic growth and job creation.

Data collaborations and partnerships

Beyond government intervention, data sharing partnerships can also help to realise the value of data assets held by NHS and care organisations. What do you think are the key barriers to participating in data sharing partnerships that NHS organisations face? 

I think that the COVID-19 pandemic has already propelled health and care organisations onto a more collaborative footing – the need to respond fast has resulted in a change in culture and practice in our healthcare system, and awareness of the potential for healthcare data to transform our prospects has, perhaps, never been more widely understood. 

But we need to be mindful that NHS organisations are not homogenous, and that how they approach data sharing partnerships will vary. Common barriers they face of which I am aware include: the quality of their data assets; the data skills, experience/inclination and capacity of their workforce; real or perceived information governance challenges; limited experience of data-driven innovation in some places / amongst some professional specialisms; lack of access to specialist legal and commercial advice; limited Board-level engagement with data-driven innovation; and a lack of demand or interest in data collaborations from third parties. 

How can organisations be supported to overcome these barriers?

Each challenge or barrier warrants a different form of intervention and those interventions will not be required universally. So, I think we need to understand which NHS organisations face particular issues and tailor, for example, investment, support or mentoring accordingly. Of course, that presupposes we want to move from the current position where we have established centres of excellence involving NHS organisations to one where every NHS organisation is ‘ready, able and willing’ to engage in data sharing partnerships for the purposes of research and innovation. Is that what we want?

Regardless, we need shared aims, forward thinking policies and the right balance of incentives and safeguards, to effect a shift from where we are now to a place where cooperation and collaboration in data-driven innovation remains the default. 

To support the research that Future Care Capital is undertaking on NHSX’s behalf, we would welcome NHS organisations to complete this health data collaboration research survey

You can find more information about Future Care Capital from their website, and on the work of the NHSX Centre for Improving Data Collaboration.