In 2014 I did a physical on a Monday and flew to San Francisco on Thursday. Landing in San Francisco at 4:30 Washington, D.C. time and while getting my bag out of the overhead, I called my doctor to check on my PSA since I knew he didn’t work Fridays.
He said, “Your PSA is fine, Greg, but you have leukemia. You have 160,000 white cells, you are supposed to have 5000.”
And so began my cancer journey with Chronic Lymphocytic Leukemia.
On my return to the East Coast, I started monitoring my white cells every 6 weeks, and in 2015 I did chemotherapy of a kind that is no longer used.
At that time, the only way to track my disease was to keep the paper printouts of my lab visits (I soon learned my white cell numbers were knowable in 15 minutes after that blood draw, not 4 days later).
In fact, every time I checked my white cells and they were over 100,000 the report didn’t read “high”, it read “PANIC.” Clearly my doctor had not panicked, he didn’t react for four days and only when I called.
On the last day of my chemotherapy, I was taking myself to dinner when my phone rang and a young person in the White House asked if I could see Vice President Biden the next morning to talk about running the newly announced Cancer Moonshot. I did, the meeting went great and so began my adventure with the Cancer Moonshot.
Your health journey is exclusively your own; it’s personal. As a cancer survivor and cancer patient advocate, I am acutely aware of this fact. It’s not just the diagnosis and treatments that define your journey, your journey is much more nuanced; it’s more akin to an odyssey.
The almost daily medical and lifestyle choices you make as you navigate your path forward, weave a unique and highly personal story of you.
The majority of my professional life has been spent in the public and private sectors on issues involving science and medical innovation. I worked for former Vice President Al Gore, both on Capitol Hill and in the White House, held a high-ranking position at drug giant Pfizer and co-founded FasterCures, a nonprofit backed by philanthropist Michael Milken that works to accelerate the development of promising therapies.
Over these many years, I have become well acquainted with the many biotech and digital technologies that are out there trying to improve the course of treatment and care.
Undoubtedly, the technology that most cancer patients are familiar with is the patient portal, an extension of your healthcare provider’s electronic medical record system.
Despite billions of dollars being invested in the development of these electronic medical record technologies, most patients would agree that their patient portal does not enhance their patient experience and, in fact, often provokes anxiety and confusion as they attempt to navigate their clinical data.
Reliance on technologies that favor the hospital systems’ administrative needs versus the patients’ needs has contributed greatly to this rise in patient discontent.
Considering that your patient portal is now the primary deliverer and storage repository of your highly sensitive and confidential health data, you would hope it would be a more patient-friendly technology.
Instead, while dealing with a chronic condition such as cancer, you are often left to cobble, decipher and understand the mountain of clinical data uploaded to your portal, or multiple portals without the benefit of a physician consultation.
This can be an overwhelming and futile task and add even more stress to what is already an unimaginably stressful time. Most unnerving is when a patient ends up receiving an alarming and unexpected diagnosis via their patient portal days before their physician can schedule a consultation.
Earlier this year, an article in USA Today written by Susan Tsiaras, the wife of StoryMD CEO and Founder Alexander Tsiaras, was brought to my attention. I had gotten to know Alexander over the years, crossing paths with him at various medical conferences and followed his health technology innovations along the way.
Susan published her first-hand account of navigating a breast cancer diagnosis and treatment while using a pilot version of Tsiaras’ +StoryMDHealth technology, a transformative health technology platform with a personalized patient portal.
The struggles that Susan experienced as she navigated the healthcare system resonated deeply with me and anyone who has undergone a cancer journey, checking your patient portal for updates becomes a frequent and anxiety-provoking ritual.
The siloed and undecipherable clinical data uploaded to her many disparate patient portals, amassed throughout her year-long cancer journey was overwhelming. As Susan recounted, she was so fortunate to have access to +StoryMDHealth’s innovative, AI-powered personal patient portal technology that unified her clinical data from multiple unaffiliated hospitals and wearable data in one place and translated it into a personalized, holistic and understandable narrative.
After reading these articles and feeling overwhelmed by the onslaught of data I was fielding while I not only navigated my post-cancer care but also continued to manage my other medical conditions, I signed-up for a +StoryMDHealth account.
Once up and running, I set up my account to automatically upload all incoming clinical data from my medical records as well as all of my wellness data from my wearables. Viewing my dashboard for the first time was a real aha moment, a game-changer for me.
Before I encountered StoryMD, I ended up in the hospital last December after months of slow deterioration of my health due to a combination of CLL, neutropenia, pneumonia, Covid, hypoxia and malnourishment. Long before I entered the hospital I had been experiencing a terrible cough that would not go away. It was accompanied by other assorted concerning symptoms.
Being the “tough” guy that I am, I brushed these symptoms aside and convinced myself that they did not portend anything serious. Fortunately for me, my wife had a front-row seat to my daily suffering and pushed me to go to a doctor to get checked out. I had waited much too long to seek medical help and by the time I did, I was quite sick, all made worse by my Chronic Lymphocytic Leukemia.
Looking back now, I can say without any doubt that were I to have had my +StoryMDHealth account back when I started experiencing early symptoms, I would have sought medical care much sooner as my dashboard would have displayed that my health trajectory was on a downward spiral.
Just tracking my weight on the StoryMD dashboard would have shown me visually that I was a plane going down.
I am struck by the fact that I can so easily track my personal bank information and stock investments daily on my financial technology platform of choice, yet it never occurred to me to wonder why there wasn’t a technology platform that similarly allowed me to view and track my medical data in one unified place.
Imagine if you could learn about your finances only after spending 15 minutes with a financial advisor and then have no way to track it yourself.
Throughout my cancer journey, I only logged into my patient portals when I received an alert that a new test result or report had arrived, certainly not daily since my doctor’s entries are few and far between. When I did log into my portals, I often did not understand half of the medical jargon I viewed.
I now view my +StoryMDHealth account daily as my wearable data is automatically uploaded in real-time and integrated with my clinical data. Now I will be the first to know if my health trajectory is taking a turn . . . this is much to the relief of my wife!
Finally, I no longer feel like the institution owns me, my data, and my journey. I have a much greater sense of control over my health decisions and a heightened level of confidence in my ability to drive my future health journeys.
Finally, a personalized patient-centric technology that empowers you to, as StoryMD’s tagline states, “Own Yourself”. And now I can track my health myself and not rely on a busy doctor to “PANIC” four days later.
