Beyond Four Walls
HIMSS16 wrapped up just last week, and while this story began years ago, the genesis for this article happened on a convention floor with 50,000 people, all of them in the health field. We attended HIMSS16 to demo our first of its kind, mobile, clinically valid, cognitive assessment platform for Savonix. As provider after provider stopped by to try it out for themselves, reliably their reaction fell into one of two camps: 1) this is great putting power in the hand of the patient or 2) you cannot share cognitive test results with patients at home! The thing is, less than a decade ago, I would have agreed with those in camp number 2. Now my reaction is – why not? A person can take an HIV test at home, a pregnancy test, a blood glucose test. Why not a cognitive test? Knowledge is power and patients cannot take control of their own health unless they have the information.
When I left Travelocity.com in 2001 to begin studies for my clinical Ph.D., it felt like I was being set free to pursue my dreams of being a psychologist and grow my ability to help people through scientific and clinical education. At the time there was no way to know that I would come to feel trapped in a system that, in many ways, still values power and control over domain expertise above the wellbeing and health of the patient. Don't get me wrong, there is a profound place for the treatment room and I believe in the power of things like Cognitive Behavioral Therapy to effect positive change for people. At the same time, traditional medicine that always requires the patient to come to the office and perpetuates doctor and healthcare system control of data is a roadblock to better care and access to that care.
A Life Changing Accident
If you had asked me who should own the medical record and how treatment should be done in 2008, I would have given you a very different answer than today. Like most clinicians across many disciplines, I was trained to value my own expertise as central to the process of healing. I was trained that strict barriers were essential and that the treatment room was one of those necessary barriers to maintain impartiality as the care provider for my patients. In 2008, I would have told you that yes, there were access issues in the system, but that with a strong advocate and tenacity, one could readily create successful outcomes.
Then something terrible and miraculous happened. Suddenly, following a debilitating motorcycle accident, I was the wife of a gravely disabled patient who could not access care in traditional ways. I was a powerful advocate for my husband, Mark, with my training and connections in the medical world through institutions like Stanford School of Medicine. I was like a dog chasing a bone to get him care – and yet at every turn, we encountered rules and systems that seemed almost intentionally designed to keep my husband ill rather than to aid in his treatment and recovery. A life-threatening infection following surgery went undiagnosed for nine weeks despite raging symptoms because my husband's sedimentation rate was so outside the average that they rated him as not having an infection when in fact he was getting close to death. At the height of that episode, we were told to put him on Benzodiazepines and accept that he would not walk again. I raved and ranted until they agreed to treat the apparent symptoms – after all what harm would antibiotics do compared to addictive drugs? Within a week of being on the antibiotics my husband was able to sit up, within six weeks he took his first steps. If I had listened to that medical advice my husband would be dead today. He was being treated like the “average” patient and that treatment almost cost him his life.
What hit me like a truck is that most wives would have “trusted the doctor” and believed that the trained professionals knew best. Most people don't know that medicine is based on patient averages, such that, if like my husband, you are incredibly healthy, a life threatening infection is missed again and again as your blood work doesn't align with averages in the case of such an infection. Something was horribly wrong and at first I could not wrap my mind around it. More than anything, what frustrated me and my husband was the lack of access and portability of his health data across systems in what was a critical time period for his health and recovery.
The At Home CMO
What I know now, what I believe, is that several things need to happen if we are to solve the problems my husband and I faced during his illness, disability and ultimate recovery.
1. Medicine has to be personalized. Mark almost died because he started out much healthier than the average patient. So what looked like a normal sedimentation rate in the average blood work was in fact indicative of a raging infection in my husband.
2. People should own their medical record and have access to all of their vital medical information on demand. (Blue Button is forging the way for personal access to one's medical records.)
3. More resources need to exist to educate the average person about their health, how to use their medical data and how to access evidence-based care.
4. Basic health care services should be available remotely to improve access to these options while also reducing cost for the patient as well as providers.
Ultimately, my journey as the wife of a patient led to my decision to go beyond the four walls of the treatment room and the hospital in my pursuit of helping people be well. Our data does us no good sitting inside a treatment room or an EHR that is not interoperable with other systems. Information is power, power to save lives. If we stymie or hinder information flow or limit patient access, we are shortchanging our ability to help and heal.
Why should we limit a patient's knowledge about their health? We need to break down the walls of siloed patient medical information with the safe technology available today. What are we waiting for? We at Savonix do not have time to waste. We are putting neuroscience where it belongs: with anyone who wants to understand their brain health better. Own your information, own your mind.