On July 13th 2013 at 7:15 pm I was sitting in a Wegman’s café eating dinner with two startup founders I was mentoring when I received a phone call from a dermatologist. He had removed a mole from my 10-year-old daughter’s arm a week earlier. My daughter and my six-year-old son sat at the table next to us chatting, eating, and playing games on their tablets. With just three words — “This is bad” — our entire world changed. We never saw it coming, we had no information, we were immediately at the mercy of strangers, and the normal we had known was irrevocably shattered in an instant, never to return.
Within two weeks after that call, my daughter would be officially diagnosed with Atypical Spitzoid Melanoma — a rare, aggressive, and atypical form of melanoma that is not easily characterized, is largely unknown and not understood, and doesn’t have the same histological patterns, markers, and structures as other, more conventional melanomas. The traditional protocol for treatment is to remove tumors and then wait to see if another returns. If your child is Stage III or IV, you might get approved for an immunotherapy — Interferon alpha 2b. But the reality is brutal and grim: not enough kids die every year to create a strong enough business case for funding research of this disease or of targeted treatments in kids even though for girls in the early stages of puberty the fatality rates range from 51-85%.
In the three years that have since past, what I have learned from my experience with my daughter’s cancer has fundamentally changed how I approach healthcare in general and my daughter’s healthcare specifically. I am my daughter’s only advocate and in the world of rare cancers in pediatric patients if you don’t take your approach to advocacy the way a Seal Team 6 Commander approaches his mission you will be at the mercy of a bevy of surgeons, oncologists, and other specialists who know enough to be divided in their thinking, will rely heavily on traditional protocols used in adults for adjudicating the disease, are unaware of targeted research, and are unable — or unwilling — to connect the dots.
I am a software engineer who has spent the better part of 20 years working in intelligence — domestic, national, and military as well as business intelligence. I came to this fight with a long-standing working knowledge of the power and pitfalls of data and from the moment my daughter was diagnosed I have been building a repository of information, correlating the data within it, and looking for patterns, relationships, and drivers of her disease. At every turn her specialists remain entrenched in prescriptive protocol despite the fact that they only thing they can agree on is that her cancer doesn’t follow protocol.
My professional training has given me a strong bias towards thinking differently about cancer. Where doctors see tissue, cells, and mechanics I see data and algorithms. Where doctors see tumors and atypical structures, I see complex systems that can be described, modeled, and exploited.
We live in an age where the amount, frequency, and types of data and information easily and readily accessible to everybody are unprecedented. Every day, over 2.5 quintillion bytes of data are uploaded to the Internet every day. This includes data and on cancers, rare diseases, the human genome, and research on medical interventions. In recent years, services for processing, correlating, and analyzing this data have also exploded so that the Internet has become a global computing processor for bioinformatics. Yet despite these incredible advances, the medical field and too many of its practioners are unaware of or don’t value the opportunity these capabilities create.
Sadly, most patients are also equally unaware of these advances and have limited ability to make use of them because the language of medicine and the data that comprises it is complicated, confusing, and requires subject matter expertise to make sense of. What I believe to be true, however, is patients, their advocates, and the industries of medicine and disease — especially rare diseases — are facing a tipping point and that within the next several years this industry will be severely disrupted for the better. The quantified self — a multibillion-dollar industry — will expand to a more important and critically useful industry for bio intelligence. In the same way you track steps, calories, and your weight, bio intelligence apps, services, and wearables will track the patterns of activity within your cells, identify indications of disease before it occurs, warn patients and their healthcare providers of impending significant events, and provide a visual, interactive picture of you at the cellular level.
The power of information will remove the barriers that prevent patients and healthcare providers from collaborating with a shared understanding and situational awareness of both disease and the unique biological profile of the individual patient. What follows are the five ways bio intelligence will democratize medicine in our lifetime.
1. The medical Tower of Babel will fall.
The key to the age of information creating a breakthrough for patients and providers alike will rely heavily on translating the language of medicine into a common language any person can read, write, and understand. In the same way the fall of the Roman and Byzantine empires ushered in an explosion of the translation of classical texts from Latin to Italian, French, English, and other vernaculars, the age of bio intelligence will usher in a slew of services that will create a universal visual and textual language to describe the human body and its mechanisms at the cellular level. This will equalize the balance of power between patients and providers because both will have a shared basis of knowledge. This will also increase the exchange of information between patients and communities and the rise of crowdsourcing of information will result in more rapid conversion of data on disease into actionable intelligence.
2. You will be your electronic medical health record.
Instead of relying on text documents maintained either in a folder or on a computer, you will be your electronic medical health record. Wearable technologies will record, report, process, and analyze your biochemical, physical, and physiological activity and identify patterns, events, and changes in the state of your health. This information will be dynamically updated giving you a view of yourself at the systems level that can be monitored, tracked over time, and is portable. You will not only control your information but you will also understand it and be able to connect with services that will use it to customize your health care experience and target providers best suited for caring for you.
3. You will custom order personalized medicine directly from pharmaceutical companies.
Your information will contain the systemic and genetic fingerprints and expressions that make you wholly and entirely unique. It will also be able to be analyzed against larger sets of information from the world of people around you and pharmaceutical companies will be able to use both to customize treatments that target disease in you by optimizing and exploiting the mechanisms within your body that created opportunity for disease in the first place. While pharmaceutical companies are using generalized genomic information already to create more targeted therapies, the availability of your specific data—and the changes that will occur over time—will allow them target therapies just for you.
4. Health care will move from being reactive to being pre-emptive.
Doctors are trained to react to disease and while patients might take preventive measures to help decrease their risk such as eating healthy, exercising, and limiting intakes of substances like alcohol, there is currently no way to pre-empt disease because we have little to no indication that it is about to strike. As the technologies that promote bio intelligence become integrated into our daily existence, our own body will be our best ally, providing both us and our providers with the information needed to understand when something bad is about to happen before it actually happens. These technologies will provide the specific information about not just the impending disease but also the best way to adjudicate it. Like a navigation tool you use when you drive, paths and alternate routes for treatment and intervention will be discoverable, shareable, and actionable.
5. You will be your own medicine.
The heart of bio intelligence will be your genetic information and the unique patterns of your cells and their pathways. As data and information about both evolves and grows over time, medicine will be less about the incidence of disease and targeting treatments that suppress the mechanics of the disease and more about harnessing the mechanisms of your own body to control the conditions and environmental impacts that create opportunity for it arise in the first place. Adjuvant therapies and other similar approaches to treating disease will morph from disabling proliferation of a disease after it starts to disabling the cellular triggers that promote it.
