As I lay here in my bed, having woken up last week with half of my face paralyzed, I am exhausted and bewildered. Aside from the horrific experience of paralysis, I have learned that my experience is not uncommon. I have Bell’s Palsy. But, more specifically, I have a version called Ramsay Hunt Syndrome, a condition where a virus attacks the main facial nerve, paralyzing half of your face like stone.
The week started normal enough, but around Tuesday I began to have what I thought was an earache. It quickly escalated and formed a slightly swollen gland under the ear/neck area. I could tell something was wrong and my wife noticed that my eyes weren’t blinking simultaneously, which I dismissed.
In any case, I scheduled a visit with my primary care doctor. I told him of the symptoms, pointed out the swollen gland and a small, blistery rash behind my ear. He checked my ears and signed off on a clean bill of health so I went home. The next day was Thanksgiving. In an effort to keep the holiday fun for my children, I visited the family and downplayed any issues. Mid-day, I realized food tasted odd and, in fact, most of the meal tasted pasty and bland.
I went home that night and slept. When I woke up Friday morning, I looked in the mirror and thought I had suffered a stroke. My world collapsed. I signed my Will, placing my assets in a trust for my children, and rushed off to the hospital.
After a number of hours in the hospital, I was laying in the cardio unit in horror when a Dr. came in smiling, “You did not have a stroke. You have Bell’s Palsy,” he said. For a moment, I tried to smile as he confirmed his diagnosis.
For treatment, I was provided a regimen of steroids and antiviral medication.
Unfortunately, the paralysis takes considerable time to heal and in some cases may never fully abate. As of writing this, 10 days since diagnosis, my facial muscles are still inoperable.
A few days passed, and with the assistance of my wife, we began to do further research. Based on the blisters behind my ear, the acute ear pain, lack of taste, and immobility of my face, she said, “I think you have Ramsay Hunt Syndrome.”
We brought this new information to a follow up medical visit. I learned that this is not uncommon and, in fact, the doctors are not even sure if the anti-viral medication helps. I asked them if my wife’s diagnostic was correct and the doctors concurred. I then requested that they change my medication regimen to fit Ramsay Hunt Syndrome, which they did.
I realized that day that the entire medical establishment, and family doctors in particular, are going through something we would never allow in the tech industry. It’s called “siloing”. This is where brilliant people are in their own buckets, unable to get full data visibility into a problem. This problem is further compounded by the pharmaceutical industry’s fervent competitive nature where lack of data sharing has lead to stagnation in treatments that service smaller market segments.
The issue is compounded as the population of the United States gets older and the general practitioner (family doctor), who are the tip of the health care treatment funnel, have to see huge numbers of patients. Treating them in an effective and efficient manner becomes nearly impossible. This single point of entry into the healthcare system creates a bottleneck which contributes to higher costs and unfavorable outcomes, paired with lack of innovation.
This is where those of us in the technology sectors can play a pivotal role by bringing proven technology and engineering from Internet methodology to the medical world.
An Open Source way forward for Medicine.
My observations indicate it is clear that the medical system is in the same state that industry and technology were in during the early days of the Internet.
The diagnostic capabilities and pharmaceutical development capabilities are roughly 20+ years behind, with technology Widening the Gap every day.
To solve this problem, in the early days of the Internet, emerged the world of Open Source software and standard coding frameworks. This enabled the Internet to be created, mobile phones to encompass the globe, and technology to constantly move forward. These same principles can be applied to the Pharmaceutical & Healthcare industry.
However, like all industries, the Healthcare industry should expect disruption but it need not be at a loss of revenue. Even with potential gains, pharmacological manufacturers will be reluctant to participate. Therefore, it will be necessary to drive forth with data collection and innovation without them as is customary in the Open Source community. Eventually, large industrial healthcare stakeholders will participate driving reduced costs, improved outcomes and insights that allow them to create innovative pharmaceuticals rapidly.
To protect industry, Open Source Medicine and pharmaceutical development can use the same licensing models which are used in software. These include GNU General Public License, version 2 or MIT license.
Regardless of the challenges, as technology leaders we must drive forth the next generation of innovation by combining the massive data power of the Internet to help and empower family doctors and patients to have success in their healthcare treatments.
J.M. del Hagen
Is the author of Modern Propaganda, Technology Entrepreneur and Data Scientist who discussed the future of Open Source Medicine in his recent piece called, “Open Source Medicine: The Future of Modern Healthcare.”