I spent a few hours this morning watching the livestream of the MedX conference at Stanford organized by Dr. Larry Chu. From the portions I have been able to watch, this looks so far to be a really great conference. The speakers this morning included a panel of self-trackers, Dr Paul Abramson (a physician who uses self-tracking in his office), Anne Wright of BodyTrack, and Sean Ahrens of Crohnology. As I’ve always found with the mhealth and quantself communities, even from my office on the other end of the peninsula watching the video via livestream, the energy, excitement, and passion are phenomenal. A few themes and ideas stand out from MedX itself and from the Twitter feed #medx, meriting some discussion.
1) Self-tracking is about the process, not the data.
This is absolutely true. Using diabetes as a reference point, just looking at data for the sake of data is a waste of time. People with diabetes make decisions all day, every day, most of which are minor and subtle decisions driven by habit. Looking at data might help them make changes, but it’s not very likely. More important is that they actively engage with the data and learn from it. This process leads to crucial education about the self and personal habits that might help lead to different behavior the next time they are faced with a decision. The act of gathering the data itself also enables personal exploration and revelations that would not be otherwise possible. Self-care behaviors and self-awareness have no choice but to improve if someone is actively engaged in self-tracking. Data should include not just numbers but life stories and context for what was going on at the time the numbers were collected.
2) Patients want doctors who believe them.
We heard this from many of the self-trackers and e-patients at MedX. There are many patients who have found our current healthcare system too impersonal and uncaring. I’ve heard this over and over, seen it happen in places where I work, and experienced it with family members. There are a million reasons why this has happened and changes have to be made to medical education and healthcare economics in order to start making patients feel cared for again. Regardless, we have no excuse. No matter what pressures exist on doctors, we must retain compassion for the person sitting in front of us. Everything else follows from this simple rule.
Sometimes, the problem can be that our current body of medical knowledge and experience is inadequate and only scratches the surface of the true pathophysiology of human disease and suffering. All physicians have had experiences with patients where we listen to the patient describe their symptoms and we know something is wrong, but we have no diagnosis, no terminology with which to describe their particular situation. This is always an incredibly frustrating experience for patient and physician alike. As physicians, we are left not quite sure what to do, which frustrates us, because we are trained to do (though we should more often be like jazz musicians and place more focus on the empty space, ie what not to do). Despite our frustration, physicians still have a choice in these situations. The patient’s symptoms can be believed and empathy given, or the patient can be told, “I don’t know what you have, but at least you don’t have ______.” I’d imagine patients prefer seeing physicians who do the former.
3) Patients want doctors who are willing to engage with their self-tracking data.
Even as a self-tracker and innovator in diabetes data and tracking, I find this leads me to some internal philosophical conflict. Do I believe that self-tracking will help many patients improve their health? Yes. Do I believe that gathering self-tracked data will play a major role in the future of healthcare? Yes. Do I want my patients to self-track and to share their data and their experiences with me? Absolutely! Does the healthcare system have the resources and ability to handle this? No. Not right now.
First: We’re not ready yet for self-tracking data from a technical standpoint.
The simple fact is that most healthcare organizations are still trying to get an electronic health record implemented. Getting self-tracked data into EHRs may be on the radar, but it is not imminent. Once we have self-tracked data in the EHR, then what? At least the patient’s medical record then becomes more whole, but EHRs have already left physicians in the position of having information overload, and this is in a situation where physicians already lack sufficient time to spend with each patient. New piles of data will only exacerbate the situation. Smarter ways of organizing and filtering the information are going to be absolutely necessary to make this manageable and to allow physicians to use the data with patients in the way it should be used. (As a slight aside, having a single, unified patient-centered record is also a precondition for a functional system. None of this works if each patient has their data fractured over ten different healthcare organizations, PHRs, and websites.)
Second: We need to find the proper place for self-tracking tools and data within healthcare, which requires a better understanding of their effect on healthcare quality and costs.
There was a Twitter comment in the #medx stream expressing outrage, saying, “Cannot believe that some diabetes tracking tools are not covered by some insurers. Absolutely nonsense!! give them the tools!!!”
This was in reference to a panelist with type 2 diabetes who used a Dexcom CGM and had to pay for it out of pocket. This Twitter comment shocked me. It is not news to anyone that the resources of our healthcare system and entire economy are strained by rising costs. There is just no way it is sustainable, acceptable, fair, ethical, or you-choose-the-word-to-put-here for everyone to expect that their healthcare insurance should cover every device they want. Our country has to stop expecting this. While there have been many new devices in healthcare that have achieved better health at a reasonable cost, history is littered with examples of new devices that have either been overwhelmingly expensive for minimal health benefit or have flat-out had negative impacts on health. So, there simply HAS to be research done (hopefully efficiently and effectively) showing that a new device has health benefit, and at some reasonable cost, before we expect insurers to cover the device. Using the specific example of a CGM for a type 2 diabetes patients, there are too many people in the country who don’t even get basic, proven care for type 2 diabetes, like eye and foot exams, blood pressure control, or metformin, for us to be claiming that all insurers should be covering this device for all type 2 patients. If a patient wants to pay for an unproven device or treatment out of pocket, I have no qualms, but we cannot expect society to pay.
This serves as a clear reminder to those of us innovating in healthcare that successful innovation will be mindful of the value equation, ie either better healthcare quality or lower cost, or ideally both. I’m incredibly optimistic and excited about what lies ahead in healthcare innovation, because I think we will create things that improve healthcare value. I believe that self-tracking will be a major component of this, and will be especially important in empowering patients, bringing new and critical data into the doctor’s office, and creating a new paradigm for the doctor-patient relationship.
What a great conference! Thank you to Dr. Chu and all of the speakers, panelists, attendees, and other remote attendees!