Patients Included: Lucien Engelen on healthcare’s least used resource

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The challenges facing healthcare are tremendous. They include sharply increasing cost and demand, combined with a shortage of primary-care providers and widespread budget cuts. And yet, Lucien Engelen argues, the system is moving too slowly toward the only real solution: inviting patients to take a more active role in their own care.

Medicine X has proudly involved patient advocates in every aspect of our conference, inviting them to help rethink and redesign healthcare. Patients have played a crucial role in developing our program – and they’ll play a crucial role when we convene in September, both as speakers and attendees.

Engelen is founding director at the Radboud REshape & Innovation Centre, the Netherlands, and also a faculty member in the FutureMed track at Singularity University. He joined me recently to talk about his work – or, as he prefers to label it – his passion.

What’s are the major paradigm shifts you’re seeking?

Right now, healthcare professionals are trained to be the only ones who know what’s happening. But that’s changing. Information is present more and more for patients so they can not only start asking smart questions but also have the means to vote with their feet, as we say. People are getting into a position to democratize healthcare, just like they democratized the music industry and the travel industry, and even, in the case of the Arab Spring, totalitarian regimes.

The next frontier will be about data being available anytime and anywhere. We will completely reshape healthcare from what I call an “ego system,” in which a patient has to come to doctors, nurses and healthcare institutions, to an ecosystem, through which we’ll bring healthcare as near as possible to patients, via the Internet, ehealth, monitoring, genome sequencing, etc. The treatments and services that are needed in a central way will be a lot more concentrated.

What do we stand to gain by giving patients a more central role in their own care?

Let’s start with the obvious point, which is not often stated: Patients are the least used resource in healthcare at present. There’s no possibility of cutting the 10-minute consultation to five minutes, I think. So for that we have to come up with smart ideas. Right now, we’re basically doing a lot of the same things that we did 60 years ago. We bring cardiac patients into our outpatient clinic to take their weight and their blood pressure, for example, even though they could easily do those things at home, giving clinicians time to do other stuff.

Giving patients access to their own data, in terms of electronic health records and correct, understandable, findable information, will improve quality and also prevent error.

Do you think practitioners are in some sense threatened by more engaged patients?

I think that’s true for a lot of healthcare professionals at present. A lot of them have trained for 17 years, only to be confronted in a 10-minute consultation with somebody who steps into the room with five printouts from Google.

That’s the negative approach. On the other hand, I see a lot of physicians and a lot of healthcare professionals who are stepping into this arena with an open mind and understanding that a new way of doing things could help all of us.

What’s the value in attending Medicine X?

Two things: First, I think Dr. Chu is great. He’s enormously passionate about doing things in the right way, with high quality. Second, I’ve been to Stanford several times – I was there three weeks ago – and again and again, what strikes me is that there’s some kind of vibe, not only on the academic level but also in terms of startups.

Looking to the program that’s being set up, I can say that the conference will be a hotspot where you can dive in for a few days and hang out with people who have the same needs, the same vision and the same drive to fix things. This is where the future is being sketched out. And that brings a giant pill of inspiration, I think.

What single change might bring you a sense of accomplishment?

Over the last two years, I’ve sensed more and more that patients are getting the role and also the credit in co-redesigning healthcare. You can see that progress happening at conferences like Medicine X, where organizers are for the first time bringing patients to the stage. I’ll be happy when I don’t have to stress over and over gain, for all the other healthcare conferences, that patients should be included in the program – invited to join as patients and not as professionals who are also patients.

Lucien Engelen is on the advisory board of Stanford Medicine X. You can read more about his patients included initiative here.

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  • Bernard Farrell
    Reply

    This is especially important for people (not patients) with chronic illnesses. In the US, there’s an increasing shortage of endocrinologists while the population of people with Type 1 and Type 2 diabetes is growing significantly. What is informally known as the DOC (Diabetes Online Community) is going to be critical in the future to support those who are living with diabetes (any type) 24×7. With the advent of continuous glucose monitors and more insulin pumpers, I believe the amount of data is already overwhelming for many doctors.

    Ideally, bloggers and social media participants could get some qualifications so readers can have some level of confidence in suggestions we’re offering. Access to data won’t help all patients unless there’s associated help interpreting that data.

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