Scientist, research and straight-talker Lucien Engelen is one of the major figures redefining research and how it’s done. He’s the director of the Reshape Center for Innovation at the Raboud University Medical Center and founder of TEDxMaastricht, TEDxNijmegen and TEDxRadboudU,. Lucien’s TEDx talk ‘Crowdsource your Health’ gives a fascinating glimpse into the radical changes healthcare can expect in the future. Elizabeth Nelson had the privilege of talking to Lucien for Humans for Digital Health.
How do you feel about health data and security, Lucien?
The window of data is clearly now open. While there are numerous opportunities, there isn’t a clear line between open and private data. Without a system and clear distinctions, it is dangerous to use the majority of the data available. An important distinction that needs to be made when it comes to private information is the question: When does data become medical? Individuals consenting for use of their data in medical research would be a great step toward clearly establishing available medical data on a grand scale. We are in the middle of exploring that.
So my reaction covers the whole spectrum from excited to cautious. Healthy people are driving data panic while research into chronic disease is progressing nowhere near as fast as it should. It’s one of the many things I see happening right now which I don’t understand.
Who will drive the growth of digital health through in Europe?
Technology has the potential to drive legislative change in Europe with regard to digital health. Patients have the right to demand digital tools as long as they comply with legislation. But, obviously, we need to make sure these tools work with our existing hospital systems. This is where individuals should not be shy and research has a great opportunity.
We should be the people producing the proof that the tools work and stimulating action. But if research wants to exploit this fantastic opportunity, we need to get moving.
Why did you decide to be a researcher?
Do I feel I’m a researcher, or is it ‘just’ part of my mission to change healthcare in delivery, education and research? All these academic components gather together in our University Medical Center. All of these aspects are subject to change due to what I call the digital health(care) transformation.
Research is shifting. What is most important now is that we facilitate the change in the right way.
I love that answer! I always say I’m too curious to be anything but a researcher.
Absolutely. Engaging the current opportunity isn’t really a job but more a drive towards identifying and understanding something that really should be known about. Good research has the potential to support this movement.
What do you think is the future of research?
There’s a classic loop in research: money connects with research which eventually finds ‘participants’, as we persist in calling them. Not patients or even people, mind you. This places the patient, disease, or problem at the end of end of the line and makes research initiatives at best reactive.
Real change will come when patients step in with money to put attention where they feel it needs to be. Researchers would then be hired by patients. We will soon re-launch Medcrowdfund™ a platform for patients to identify the (research)questions THEY have. Supported by technology they will be able to recruit other patients to join the research by downloading that specific research-app for a small amount of money. With that they will collect the money to ‘hire’ researcher(s) for answer their questions. We gave this a try 1.5 years ago, but did not succeed due to technical challenges, and lack of knowledge of crowdfunding back then. Both topics we think we’ve covered right now. So the coin is potentially flipping!
Also our concept Hereismydata™ supports patients getting more into the lead by opening-up all the data sources to the patients. With our partner Philips we started with this in their Philips Digital Health Suite (PDHS). They developed a cloud based health platform connecting doctors to patients to monitor chronic diseases, that to us operationalizes our Hereismydata™ ambition. The process creates a dynamic where patient and doctor were equal partners in the process. Patients won’t control the medical process or health research but they will be taken more and more seriously while medical professionals will get subscriptions to data that comes out of the research. These are exciting times.
Thanks for your great insights, Lucien.