Healthcare IT in Europe: The patient as a co-builder

Facing the silver tsunami of an ageing population, healthcare will have to use data and information in ways not used before. Success, though, will only come when the patient is understood as being the co-builder of the healthcare information space.

By
Philipp
Grätzel von Grätz

Healthcare is transforming at a breathtaking speed: “We are going to see a very different healthcare space in the future. 20 years from now, medical care will largely be centred around patients’ homes”, said Hal Wolf, President and CEO of HIMSS, in his opening speech at the annual European HIMSS conference, HIMSS Europe 18 in Sitges, Spain. For Wolf, a key driver of healthcare transformation is not so much technology as such, but having access to data that was not available before: “We have to turn this data into information and use it. Knowledge management is where growth in healthcare is taking place.”

For patient advocate, health blogger and social media consultant Marie Ennis-O’Connor, digital transformation doesn’t start with engaging the technology but with engaging the patient: “We haven’t seen any significant progress in turning the rhetoric of patient engagement into tangible reality in the real world of real patients’ lives.” One reason for the lack of progress, according to Ennis-O’Connor, was that patients were still not really involved into the creation of the healthcare information space. Patients, she argued, have to be finally considered real partners in designing healthcare: “What we need goes beyond inviting patients to your table. We need patients to co-design the table.”

Uniting and working collaboratively with patients

How such co-designing would look like was illustrated by Fabian Bolin from Stockholm. Bolin, who was diagnosed with leukaemia three years ago in his late twenties, is the initiator and co-founder of WarOnCancer, an online Facebook-like storytelling platform for cancer patients from all over the world to share their histories and provide mental support for each other: “Our goal was to unite people globally and to create a space where they are no longer seen as victims, but as heroes.”

Up to that point, WarOnCancer would be just another patient-initiated online-platform. But Fabian Bolin’s ambitions go way beyond that. Not only is WarOnCancer about to launch an app that allows patients to share journeys, follow other patients, and collect and share personal health data towards the end of June. There are also major co-operation efforts underway both with healthcare providers like Sahlgrenska University Hospital in Sweden and biopharmaceutical companies. Among others, WarOnCancer strives to become a matchmaking portal for clinical trials and as such become increasingly interconnected with the traditional healthcare information space.

Philipp Grätzel von Grätz

(Germany) specialises in medicine, health policy and, in particular, eHealth and information technology in healthcare. He is one of Europe’s leading journalists in the field and author of the German book Connected Health.

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