You Are Forgetting the Patient, but You’re Not Alone

Vincent Keunen, founder and CEO of Andaman7

I am constantly amused, but most of the time frustrated by all the companies active in clinical research that keep saying that the patient is important. But at the same time, it is obvious that they mainly focus on their own business, which is to execute clinical research. Yes, in a sense, they work for the patient if they are trying to find new treatments that will benefit them. So, yes, they are working for the patients—but in the long-term. What about the short term? All the platforms and digital tools I have seen have been built first for clinical research—then add features for patients as an afterthought. Features to simplify the process of the clinical trial. Features to ease the collection of data for the sponsor of the study. Features to motivate the patients to stay in the study.

Do you see the common thread? It is MAINLY for the sponsor.

Patients are not dumb, they see clearly your intentions. They also see clearly through all those companies collecting data by offering free products (even outside of clinical research).

At some point, they become tired of all that. They drop out. And you lose your best chance to run a successful trial. Without patients, getting new treatments to the market is getting harder and harder. And more and more expensive.

How do you enjoy killing the golden goose?

No. We need to *really* take patients into account. What patients (like me) want is, simply, to be in good health. Obvious. And for that, we need good treatments. Obvious too. But we also need to be IN CONTROL. We need to be in control of our choices. In control of our data. Only if we have full control of our health data, then will we be in control of our health.

The ultimate tool for that is a PHR: a Personal Health Record. A tool to collect and manage all of our health data: medical, activity, nutrition, sleep, etc.

That means the PHR must be connected to all my data sources: my hospitals’ EHR, my labs, the devices I use (like glucometers, blood pressure monitors, oximeters…), the other apps I use, etc.

I must have that with me all the time. Even if I don’t have internet access—because I’m in the hospital! Or abroad on vacation. Or in transportation. So it must be on my smartphone. Locally. A web application won’t work for that. It must be a native mobile application.

I also want all my data (or a copy of it) to be stored locally on my smartphone. If my data is online, controlled by someone else, my access to it can be shut down at any time. And you know what? It will happen exactly when I need it most.

I also want 100% privacy. Or at least 100% control of who I share my data with. That’s another reason why I want my data to be stored locally on my phone—and not online (unless I personally decide to back it up somewhere confidential). Some patients, like my friend ePatient, Dave deBronkart are comfortable being a “health data nudist.” That is great and helps him be a very efficient patient advocate. But most of us want privacy—or need privacy: see the work on the RTBF (right to be forgotten) of my other good friend, Francoise Meunier, MD, PhD.

I also want advanced sharing capabilities, totally under my control. I want to share my data easily with whoever I decide to. And stop sharing whenever I decide so.

(Note: data “ownership” is not a real issue. Since it’s digital, multiple copies can be made. So, what’s important for me is that I have access to a copy of all of my health data—whoever produced it).

So, in summary, what I want is a powerful PHR, running on my smartphone, storing data locally ONLY (+ private backups), with good sharing capabilities. All under my FULL control.

I also want that in my own, native, language.

And if it can be free of charge, then that’s even better. BUT I want a guarantee that: “I’m not the product.” It should be really free with no strings attached. Maybe those that need my data can contribute financially to this tool I need?

Then, and only then, we could think about clinical research. And remote care. And maybe integrate components to facilitate the needs of those that work for me as a patient: doctors, hospitals, researchers. Only then could I agree to share some or all of my health data. And ONLY after I fully consent to it. It’s “my health - my data”—remember? And I will decide if I do it for free (for the common good) or for some kind of retribution (some say “data is gold”).

Okay. These are good ideas, but probably too ambitious.

This probably does not exist. And won’t exist anytime soon.

Or does it?

PS: Why am I doing all this? Read the story of my and my son Pierre’s cancer: http://bit.ly/a7vkblogen

Vincent Keunen, founder and CEO of Andaman7