Why It’s Good to Share Health Data

When Professor Andrew Morris, Director of Health Data Research UK visited Australia earlier this month for eHealth Expo Queensland he spoke to his organisation’s vision that every health and care interaction and research endeavour will be enhanced, enabled and derived from large scale data and analytics, as it is in other industries. He closed his keynote speech 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.

The headline summed up what was a fantastic presentation, one that centred on the idea that suitably protected data on the health of individuals, gathered and shared as widely as possible, will bring enormous benefits and efficiencies in healthcare. Professor 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. The pre-requisite for the realisation of the vision is an environment of trust.

“There is an urgent need to migrate from measurement of activity to real time measurement of processes, and outcomes meaningful for patients, Professor Morris said before illustrating his presentation with compelling examples, the first being the Scotland’s Single Clinical Information System-Diabetes (SCI-Diabetes)…

SCI-Diabetes

The Scottish Care Information Diabetes Collaboration uses SCI-Diabetes, a single shared electronic record, for cross boundary support and real time data entry. SCI-Diabetes offers a full patient contact record and record of care and a greater range of shareable information. For 20 years its maintained a database of almost all Scots suffering from diabetes, around 270,000. 

“We’ve linked all sorts of data, imaging lab, pharmacy, hospital, general practice data,” said Professor Morris. 

“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 sufferers] is some of the best in the world, from whole system intelligence being a focus for care.”

Staying in Scotland, he went on to explain that data has also been used to demonstrate the effectiveness of health policy, 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.”

Click here to watch the full presentation from Professor Andrew Morris at eHealth Expo.