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Developing an ecosystem for health and care data

By - Integrated Care Journal

Developing an ecosystem for health and care data

Is change on the horizon for data utilisation in health and care? Caroline Cake, Chief Executive of Health Data Research UK provided a timely update at a recent Public Policy Projects webinar.


Over the last 12 months the use of health data has played a crucial part in the response to the coronavirus pandemic. The Covid-19 symptom tracker, for example, has helped identify loss of sense of smell as a key symptom of the virus. There is a unique opportunity to take data utilisation to another level, and this thinking prompted a review from the Department of Health and Social Care (DHSC) into the use of health data for research and analysis. This review will form a crucial part of a new upcoming data strategy for health and social care.

Indeed, there are growing calls to develop a health data ‘ecosystem’ in the NHS. This was the topic of discussion at a recent Public Policy Projects webinar with Caroline Cake, Chief Executive of Health Data Research UK – an organisation with the crucial task of trying to leverage the UK’s unique access to health and care data to its fullest potential.

With DHSC’s recent white paper outlining a statutory basis for integrated care systems, Caroline suggested that a shift is on the horizon unite currently disparate parts of health and care delivery. This, she said, will have major implications for the ways in which we use health and care data, which will massively benefit from an integrated approach to care delivery.

“You've got imaging data, you've got genomic data, you've got a primary care data. It's a really wide range of different sources and types of data and there is huge research value by linking different types of data together," outlined Caroline.


Addressing data complexity

When researching on a large scale, such as in the case of a rare disease, it is necessary to obtain national and even international data. The issues arise when health data exists in many data settings, meaning there are different datasets over different locations. Within the UK alone, each of the four nations may be able to supply their own data on one singular subject.

Caroline explained: “there are different needs and different purposes for the research going on, which means you've got many different ecosystem partners and participants needing to support health data research, from patients, publics, practitioners, through to the data custodians…and as a result you’ve got many sources of data. ” 

Data custodians can range from biobanks and hospitals to charities. These different organisations and sources offer a great level of health data diversity and the value of the potential for varying discoveries cannot be overlooked. However, as Caroline highlighted, this adds a layer of management complexity.

“There are concerns over how then, given this complexity, the data is actually used and given the personal identifiable aspects of it there are aspects of who’s using it and for what purpose,” she said.

According to Caroline, the key to integrating health data sources and settings is to establish a trustworthy “ecosystem”. The ‘five safes’ were created by the Office of National Statistics in 2002 as a framework to facilitate trust. These include ensuring safe projects, safe people, safe settings, safe data and safe outputs. This boils down to enabling the appropriate and secure use of data in an authorised setting by trusted users.

Caroline emphasised that in order to build trust on a greater scale across organisations, there must be a shift from “one-to-one" relationships to “many-to-many". In future, a chain of trust has to be organised through each facet of health data research, from regulators, patients, trust research settings and data custodians. Just as there are many links to this chain, there are many processes involved and each component requires transparency as to how the data is being used and why.

“Each of these areas in between needs to be a trusted relationship between those different participants or organisations and the wrapper around the whole of that needs to be a sense of public trust around how the whole chain works together,” said Caroline.

The NHS research environment stands to gain much from this this integrated approach to health and care data. Traditionally, the researcher enters the trust research environment so that the data does not travel between locations. However, this can present challenges when linking health data between different environments. An ecosystem would enable federation and analysis between environments without data travelling.

Caroline said, “That’s a really interesting aspect of actually getting into a secure and federated approach all set within a much wider ecosystem of research across academia, industry, NHS and getting to outcomes, by working across a trustworthy environment. ”


Time to unify our data strategy 

The pandemic has demonstrated the need for unification between health and social care bodies in order to improve patient care. The same can certainly be said for the way in which the wealth of health data available in the UK is harnessed to make potentially life-saving advancements. A trustworthy ecosystem could be to health data what integrated care systems are to NHS services; an integrated, honest and reliable approach, crucial to pandemic recovery and beyond.


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