“When you live with a life-altering health condition – like an autoimmune disease, chronic illness or developmental disorder – there are bad days and good days without hows or whys. Maybe there’s a pattern to what hurts and what helps, but you haven’t found it. Yet.
Betterpath is a free service that combines what’s happened in your medical history with what’s happening in your life, so you can find connections between what you do and how you feel.”
April 12, 2015
“OUR PAST AND PRESENT [PATIENT] DATA IS A FOUNDATION FOR BETTER [MEDICAL] CARE IN THE FUTURE.”
The information required by the phrase, “medical history,” is inherent to the various “forms” which must be completed in order to be treated by healthcare professionals in medical practices and hospitals. Yet, even chronic patients typically have very little meaningful recall of the logistical and medical specifics pertaining to fairly recent, but significant, medical or surgical events which occurred in their lives. Common rhetorical questions uttered by these patients when trying to reconstruct their medical histories include: “What was the name of that growth taken out of my colon a couple of years ago?” “Where’d I put the pathology report?” “What was the doctor’s name?” “I remember they put me on a very strong antibiotic after the procedure and I had a bizarre reaction to it, what was the name of that drug?” “When was my last colonoscopy?”
Additionally, when annual or new physician “forms” require disease-specific information regarding medical histories of our siblings, parents, grandparents, aunts, uncles, etc., we find ourselves in physician waiting rooms actually saying out loud to our wives, husbands, mothers, or to whomever else accompanied us to the physician’s office: “Honey, does anyone on your side of the family have heart, lung, gastrointestinal or psychological problems?” But then we realize our trusted companions are not exactly using scientific techniques to “access” this information so, we guess; and we try to remember if our long-deceased, and sorely missed, heavy-set uncle talked more about his heart or his lung problems, when he regularly took us kids to Yankee games and made us swear we wouldn’t tell our aunts how many jumbo hot dogs he ate at the ballgame. Equally worrisome is how “accepting” many medical facilities have become of such inexact determinations of family medical histories when science has proven how valuable this information can be as predictive evidence of serious, and even life-threatening, medical conditions, which can possibly be prevented or mitigated with the appropriate medical surveillance methods, diets and exercises.
At one time or another, especially if we have chronic, autoimmune illnesses like Crohn’s Disease, which cause hospitalizations, surgeries, and require interactions with numerous non-gastrointestinal medical specialists to treat its peripheral manifestations, we all ask ourselves questions like these and wind up being content with “trusting the healthcare system,” especially since the required adoption of Electronic Medical Records (EMRs), but hospitals and medical practices are not designed to keep chronological and comprehensive files of our respective medical histories. It is simply too much to ask of an industry replete with inefficient and bureaucratic business systems. Moreover, at some point, accountability for one’s health becomes a personal responsibility and that begins with maintaining one’s own medical history and becoming “the expert in you.”
“BE THE EXPERT IN YOU”
Becoming the medical “expert in you” seems to be an easy chore for a normal person but it can be overwhelming for chronic patients like me because thirty (30) years of Severe Crohn’s Disease has resulted in approximately two-hundred (200) hospitalizations, twenty-five (25) major surgeries and running the gamut through all Crohn’s Disease medications from the comparatively benign “Azulfidine” to the potent capabilities of “biologics” such as “Remicade,” “Humira” and “Cimzia.” If I’m not busy dealing with the disabling gastrointestinal effects of Crohn’s Disease, I also have to contend with the consequences of its peripheral manifestations such as two (2) cataract surgeries, chronic dental complications, annual bouts with “sacroiliitis,” iron deficiencies, pain management and many other “inflammatory-based” medical woes.
As I’ve gotten older, I’ve also learned the “price to pay” for years of treating Crohn’s Disease “symptoms” (since the “cause” has not yet been defined) with steroids and the aforementioned biologics includes very serious medical problems ranging from a simple Left Hip Replacement (with a Right Hip Replacement likely necessary within 18 months) to an inflammation-based lung condition which caused such severe shortness of breath that only T-cell-based chemotherapy was successful in restoring my ability to breathe normally, and, in one (1) extreme flareup, save my life. This lung condition has become chronic and surgical lung biopsies have revealed necrotic tissue; samples of which have never been seen before by the top pathologists in the United States.
More serious from a medical records perspective, however, are the informational gaps typically present in the patient histories caused by chronic diseases like Crohn’s which greatly affect young adults who are classically not yet established in a particular locale due to their understandable aspirations to go to graduate school at the most appropriate school for them, no matter where it is located, and/or to pursue professional careers which may involve moving to a different state with each career opportunity, where- and whenever it presents itself. Thus, keeping track of all the different doctors and hospitals along the way creates incomplete patient histories. That’s exactly what happened to me as these aforementioned hospitalizations, surgeries and medical mishaps have occurred while I was living in New York, New Jersey, Boston, MA, Austin, TX and Los Angeles, CA. As is also the case with most other Inflammatory Bowel Disease (IBD) patients, due to the unpredictability of Crohn’s Disease many of my medical mayhem has also interrupted business trips and vacations requiring the creation of some type of hospital, clinic or medical practice “patient record” in places such as Portland, OR, Dothan, AL, Amarillo, TX and in many other places, both foreign and domestic.
“BETTER CARE STARTS WITH BETTER INFORMATION. THAT’S WHY IT’S IMPORTANT TO HAVE YOUR HEALTH RECORDS ON HAND.”
Please understand I’m sharing an overview of my medical history to demonstrate the voluminous amount of documentation required to become “the medical expert in you.” As I’ve always believed the aggregation of individual patient data represents the “missing link” medical researchers need to finally develop safer and more efficacious treatments which attack the CAUSE of Crohn’s Disease and Ulcerative Colitis and not its SYMPTOMS, I began more seriously “becoming the medical expert in me” in 2005 just prior to relocating to Los Angeles, California for a new job. This “major life event” triggered a brief but profound reflective period in my life and it began to bother me that pieces of my small bowel could be anatomy prank fodder for some wise-ass (e.g., my much smarter doppelganger) in a medical school somewhere or just lying in the freezer in any one of many different hospitals around the country. I also didn’t have the Operative or Pathology Reports of my numerous Crohn’s Disease surgeries, which at that point in time had left me with approximately six (6) feet of my small bowel (a healthy adult has approximately twenty-one  feet of small bowel) so I wasn’t exactly “playing with the house’s money” and that made me feel irresponsible.
Knowing how slim the margin for error had now become were I to run into Crohn’s Disease-driven intestinal obstruction problems while I pursued my life-long dream of making movies in Hollywood, I had made myself much more vulnerable than was necessary. The only way I could reliably stave off additional intestinal surgery in such circumstances was by “becoming a medical expert in me” and displaying that knowledge to an “LA surgeon” who knew nothing about me would be rather simple if I only had the proper paperwork for each surgery demonstrating that I was “on top” of my disease. Knowledge really is power when dealing with an illness as mercurial as Crohn’s Disease. Accordingly, I did some research on the Internet and then mailed out signed Authorizations to several hospitals and medical practices in at least seven (7) different states and crossed my fingers hoping the names of hospitals hadn’t changed and any applicable medical records retention laws were properly followed and /or certain facilities planned on keeping all medical records forever.
“HAVING COPIES OF YOUR MEDICAL RECORDS IS GOOD. UNDERSTANDING WHAT’S IN THEM IS BETTER.”
A few weeks later, I began to accumulate huge stacks of medical records which needed to be scanned into my computer; my plan all along. That’s when I “hit the wall” and “punted” because I simply did not have the time to carefully and methodically carry out my plan. But before the ball was snapped, I made sure I devised organized piles of the medical records and securely stored them in an easily accessible place (i.e., my basement) in case I needed them in the future. Although I do still try to obtain all of my medical, surgical, laboratory and pathology reports and then scan them into my computer (this includes simple blood tests, the precise pharmaceutical makeup of my chemotherapy, radiology reports, etc.), I have no idea what they all mean but at least I feel as if I can readily participate in helping medical researchers find safer and more efficacious Crohn’s Disease treatments, when I am summoned to do so.
“BUILDING A BETTER HEALTH STORY.”
When I returned to New Jersey in 2010, I knew much had changed in the past 5-7 years regarding incremental advancements in healthcare technology and in the development of precise healthcare data analytics, but I was still waiting for the smart entrepreneurs and technologists to focus their formidable talents on the enormous amount of opportunities which lie in fixing the grossly inefficient healthcare industry, including the crowdsourcing of patient data to help develop safer and more effective treatments, or even cures, to diseases which were once thought to pose forever unanswerable questions. But I think I only truly realized the new “digital” healthcare capabilities after having the honor of recently being appointed by the US Department of Defense (DOD) to be a “Consumer Reviewer” in the Congressionally Directed Medical Research Program (CDMRP), Peer Reviewed Medical Research Program (PRMRP). As a Consumer Reviewer, I was a full voting member, along with prominent Scientists, at meetings in Washington, D.C. to help determine how the $200M for Fiscal Year 2014 (FY14) will be spent for the Peer Reviewed Medical Research Program and its twenty-five (25) topic areas of research.
The knowledge I gained about the overall United States medical research process from just listening to the country’s brightest scientists during our lunch and dinner sessions was invaluable. Just like these scientists were fascinated by the few participating patient “consumer reviewers” who added “seasoning” to the festivities with their “tales of reality” about living with a particular disease compared to the otherwise bland boring research proposals, I could tell how much more prolific these scientists could be if the patient data they routinely reviewed instead told a “story” of that patient’s heroic battle with an often disabling disease. Logically, it seemed as if these scientists were “close” to discovering more efficient, effective and precise treatments for each of the twenty-five (25) diseases such that all they needed to break the next barrier was large amounts of some type of standardized patient history from which to analyze commonalities and other comparative algorithmic results. But scientifically, the frustration of the elusiveness of this type of consistent patient history was palpable in my conference room and at times it literally affected the room’s morale.
“BETTER TREATMENT STARTS WITH BETTER DATA.”
Then, a few months later, I received an unsolicited email through LinkedIn from Alexandra Sinderbrand, the Engagement Ambassador from a company called “Betterpath.” Alexandra had reached out to me based on my active presence in the various Crohn’s Disease and Ulcerative Colitis health care social media platforms. She also knew I founded and operated a patient-support charity called the “Crohn’s Disease Warrior Patrol” [the “CDWP“] which was predicated on the simple premise: “Patients helping other IBD patients, can be the best medicine.” Her email indicated she had Crohn’s Disease and that the numerous frustrations of helping her, caused her dad, Gary Sinderbrand, to start Betterpath because the treatments for Crohn’s Disease and Ulcerative Colitis seemed to be archaic and frozen in technology from the 1950s. She also emphasized how Betterpath focused on better treatments through better data which started with understandable patient histories which told the patient’s “story” instead of listed his or her vital statistics. Given the seemingly individualized manner in which IBD affects different patients, I couldn’t agree more with everything she wrote and our email exchange soon turned into a long phone call.
“WE FIND THE FACTS THAT MATTER, AND SUMMARIZE WHAT’S HAPPENED.”
As they say, she had me at “Hello” because what she was saying helped me understand the value of the stacks of medical records “securely” piled up in my basement. Through Betterpath, there was now a method for IBD patients to help one another to, at best, crowdsource the most effective and safest treatments, and at worst, make their medical histories “come to life” by way of a “better [digital] health story” any doctor could easily understand. I became convinced of this after watching the three (3)-minute video below from Betterpath featuring Alexandra Sinderbrand explaining how Betterpath obtains, secures and analyzes patient medical histories. In the video, Alexandra uses her own medical history to illustrate the capabilities of Betterpath, some of which are still in beta phase.
“WHEN YOU JOIN BETTERPATH, YOUR ANONYMIZED MEDICAL AND LIFESTYLE DATA BECOMES PART OF OUR NETWORK TO POWER MORE EFFECTIVE CARE. THE MORE DATA WE HAVE, THE CLOSER WE GET TO THE ANSWERS THAT HELP YOU – AND OTHERS LIKE YOU – GET BACK TO BETTER.”
“BE PART OF THE ANSWERS FOR YOU, AND OTHERS LIKE YOU.”
As I learn more about healthcare analytics from super-smart business colleagues like the folks at Symplur.com and I attend cutting-edge digital healthcare conferences like Doctors 2.0 & You in Paris, France where I’m afforded the opportunity to casually socialize with some of the world’s most innovative healthcare thinkers, I’m beginning to believe how powerful of a healthcare tool “Crowdsourcing” will be once medical “Wearables” become the norm and a company like Betterpath is able to synthesize its “bank” of individual patient histories into multiple identifiable patient data points to compute the most effective care then available for patients suffering from IBD or IBS. More specifically, Betterpath will make it possible for a Crohn’s Disease patient and his gastroenterologist, for example, to both enter the exam room empowered with the knowledge and experience of tens of thousands, or hundreds of thousands, of Crohn’s Disease patients with similar data points such as age, gender, location of disease, severity of disease, past medical treatments for the disease, past surgical treatments for the disease, recurrence of the disease, etc. for the purposes of determining the most effective care for THAT PATIENT at THAT POINT IN TIME.
The Patient Perspective:
Betterpath “Patient Summaries”
When I explained the extraordinary service which Betterpath currently provides to Inflammatory Bowel Disease (IBD) and Irritable Bowel Syndrome (IBS) patients to my longtime New York City gastroenterologist, Dr. Mark L. Chapman, who is 1 of only 3 or 4 gastroenterologists still practicing who were trained by Dr. Burrill Bernard Crohn (the first doctor to identify Crohn’s Disease in 1932), he said something to the effect of this to me: “Michael, if they can organize your 30 years of medical records into a comprehensive digital file such that an experienced gastroenterologist reviewing that file could quickly be brought up-to-speed on YOUR case, THAT would be very impressive.” THAT, seems to be exactly what they are doing and I have been so impressed with the process and “product” thus far that I am recommending it to all of the Crohn’s Disease and Ulcerative Colitis patients who’ve been members of the “Crohn’s Disease Warrior Patrol.” The CDWP is also working with Betterpath to create a “Summer Meetup” in New York City on a date, and at a venue, soon to be announced so that patients in this area of the United States could ask questions of the Betterpath Team and review MY Patient Summary, even if only for entertainment purposes.
Whether you are a member of the CDWP, you have Irritable Bowel Syndrome (IBS) or you have any type of IBD such as Crohn’s Disease, Ulcerative Colitis or Indeterminate Colitis, I STRONGLY ENCOURAGE YOU TO visit Betterpath.com and sign up so that you at least eventually receive your digital Medical History and “Patient Summary.” If you have ANY questions about Betterpath, please contact its “Engagement Ambassador,” Alexandra Sinderbrand. [It is my understanding Betterpath plans to gradually expand its services to ALL CHRONIC PATIENTS but at this early-phase Betterpath is mastering the application of its proprietary technology to IBS and IBD patient histories since it first began analyzing IBD and IBS patient histories because of the aforementioned personal family connection to them.)
- Betterpath collects your medical records – paper and electronic – before building your “Patient Summary” – FOR FREE;
- They “summarize” your medical history with Betterpath proprietary algorithms which convert your patient data into meaningful information conveyed via Betterpath’s “Patient Summaries” which more vividly describe your disease all the while linking back to sources in your original medical records;
- They are able to provide this service for FREE to you and your doctor by selling access to de-identified (anonymous) data generated by the medical histories of all the patients who sign up at Betterpath;
- Betterpath uses state-of-the-art cryptography techniques to protect all patient data such as two (2)-factor authentication and encryption;
- Betterpath meets or exceeds all applicable standards regarding medical information privacy, as it is classified as a “healthcare clearinghouse” under “The Health Insurance Portability and Accountability Act of 1996” (HIPAA), which establishes national standards for electronic health care transactions and medical information privacy;
- If you sign up and later decide to leave Betterpath, you can permanently delete your personal information from their system, at any time, for any reason. You can also download your medical records and “Patient Summary” before your delete your account.