Moving towards proactive preventive care, will require a new approach to data governance as there are privacy implications and interoperability considerations. These were discussed at today’s HIMSS & Health 2.0 European Digital Event Evening Keynote: ‘Toward Precision Health – Pushing the Frontiers of Privacy, Interoperability and Digital Literacy’. The Speakers were: Mary Harney, Former Minister for Health and Children, Independent Company Director, Ireland, Prof Ran Balicer, Founding Director, Clalit Research Institute, Israel, Prof Dr Erwin Boettinger, with the session moderated by Dr Charles Alessi, Chief Clinical Officer, HIMSS, UK.
WHY IT MATTERS
Prof Ran Balicer, Founding Director, Clalit Research Institute, Israel said there two key challenges to moving forward with personalisation of care: “Data that is needed to provide a personalised, predictive, proactive approach in many settings, countries and organisations, requires integrated, harmonised and well-curated data, and that is more difficult than people outside the medical realm would think.“
He said data is siloed: Data about primary care resides in different settings fomr hospital care data. And the data from the labs is in a different silo from the imaging data. Additionally, the ability to connect all the dots based on personal identification is more difficult in some countries than others.
He said his second concern was: “When you want to take something that works tremendously well in the labs and want to put it into practice, you meet the challenges of the work processes of the health staff, who work in those trench lines, and have to try to embed something new, and even exciting, in their arduous lives. And there’s very little thought about user interface.” He added that the problem is not a lack of interesting data but an overload of data.
ON THE RECORD
Mary Harney, Former Minister for Health and Children and Independent Company Director, Ireland, said: “Clearly the data has to be harmonised, standardised and interoperable. Our current health service was set up after the Second World War to deal with sickness not health. Eighty per cent of health budget in most of the developed world is spent on chronic illness, so it’s not fit for purpose. The sooner we get a personalised precision health service the better. It’s a big project, it’s ambitious and the challenges are cultural, organisation, governmental and financial.”
Prof Dr Erwin Boettinger, Professor and Chair, Digital Health Center, Hasso Plattner Institute, Germany, said: “The experience of COVID in Germany has brought a shift in mindset. A German poll found 70% of people were open to having data used to find cures and better approaches. People began to think if we had had digital transmission of the results, it would have been five days faster, which means five days less for a positive individual to be spreading the infection because the information transmission was the problem.”
However, he said it was still an uphill struggle to convince people to trust their governments with their data. He said it didn’t help that interpretation of GDPR rules across EU countries was so different. He added the tremendous benefits of digital health and precision medicine should outweigh concerns over data breaches.
Prof Balicer believes that precision health will soon be widely available, “Predictive, proactive, preventive care is not just a vision; it’s something that can be done. We have been doing it for the last decade for millions of people on a daily basis. We have been using algorithms and personalised data driven decision support tools that allow patients to get predicted, proactive, care to alert them days or, even years, before a disease manifests [itself] or exacerbates. And we have been showing the added value of this on the patient outcomes, system level outcomes and economics.”
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