Health Data: Why It’s Good To Share

Andrew Morris, director of Health Data Research UK, closed his keynote speech at this month’s eHealth Expo Queensland with a headline from the Wall Street Journal.

The new Einsteins will be the scientists who share: from cancer to cosmology. Researchers could race ahead by working together online and in the open.

It well-illustrated the thrust of his presentation, and the goals of the organisation he heads: The gathering and sharing, as widely as possible, of data on the health of individuals – suitably protected — will bring enormous benefits and efficiencies in healthcare.

Morris illustrated his presentation with compelling examples, the first from Scotland, with a population of around five million, similar in size to that of Queensland.

“For 20 years Scotland has maintained a database of all Scots suffering from diabetes, around 270,000 people: the Single Clinical Information System-Diabetes (SCI- Diabetes),” Morris said.

“We’ve linked all sorts of data, imaging lab, pharmacy, hospital, general practice data. … We’re capturing data on over 90 percent of people living with diabetes in Scotland. And within seven years we reported on a 40 percent reduction in amputation, a 50 percent reduction in blindness. Our life expectancy [for diabetes suffers] is some of the best in the world, from whole system intelligence being a focus for care.”

Data had also been used to demonstrate the effectiveness of health policy, Morris said, citing the impact of a 15-year old ban in Scotland on smoking in public places.

“We used routine data on five million people to ask two questions: what was the impact of the ban on admissions for acute coronary syndrome, and on childhood asthma. We showed the incidence of acute coronary syndrome events fell by 70 percent … and hospital admissions for childhood asthma fell by 18 percent. That was a great use of data to demonstrate to our political masters that policy is effective.”

A data-driven inflexion point in healthcare

Morris argued that healthcare delivery, worldwide, is at an inflexion point characterised by a shift from a focus on eHealth and electronic health records to data driven innovation, catalysed by data science.

“There is an urgent need to migrate from measurement of activity to real time measurement of processes, and outcomes meaningful for patients. … Imagine if we could use data in real time to inform every decision that we make to benefit patients.” he said.

However, he said a pre-requisite for the realisation of this vision would an environment of trust. “This requires a new social license, because with big data goes big responsibilities.”

For Scotland’s five million people, Morris said it was now possible, in a trustworthy way, to link de-identified data across journeys of care from birth to death, and to link social and environmental related data sets. “We’re linking geospatial, educational attainment data sets at scale,” he said.

Vision: A learning health system

He envisaged what he called “a learning health system”: infrastructure as a service, or platform as a service that can collect data once and use it for a host of health purposes, such as prevention of disease, earlier diagnosis and drug safety.

According to Morrison, the majority of health data gathered on populations is presently not used for direct benefit. “We accrue data, we study, we analyse and we publish it in a journal. And it’s not accessible, it doesn’t benefit the folk who actually contributed to the generation of that data.

“We need to think about whole system intelligence, in the context of learning health systems: that we use data, not only to derive new knowledge, but … to spin that knowledge back into the system. And the closer to real time we can do that the better.”

This, he said was the vision of the organisation he heads, Health Data Research UK, set up in mid 2018. “It’s a new type of partnership Institute, where our vision is that every health and care interaction and research endeavour will be enhanced and enabled, derived from large scale data and analytics, as it is in other industries.

“To do that we are uniting the UK’s health data in all its multimodal forms, including devices and personal data, to make discoveries that improve people’s lives.”

The data-driven goals of the organisation are impressive: “We’d like to be able to run studies on up to 65 million people,” Morris said.- Healthcare IT News