“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 17, 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 recent federal mandate of Electronic Medical Records (EMRs) and propagation of “digital” record-keeping, 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 healperson 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 might 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 painful and systemic “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” with steroids and the aforementioned biologics (as opposed to focusing treatments on its “cause,” which has not yet been specifically defined) and for me that has included very serious medical problems ranging from a Left Hip Replacement (with a Right Hip Replacement likely necessary way too soon) 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 flare-up, save my life. This lung condition has become chronic, but thus far manageable, and surgical lung biopsies have revealed necrotic tissue; samples of which have never been seen before by the top pathologists in the United States.
Mine is likely more of an extreme case but I’ve also been somewhat lucky in that I have not been affected by the more typical day-to-day, prolonged but less talked about complications of Severe Crohn’s Disease (and side effects to its medications) such as fistulas, abscesses and pancreatitis, each of which can cause even more frequent and more frustrating hospitalizations than I have experienced. Still, becoming “the medical expert in me” was never easy as it first felt like an extension of the disease so I tried to ignore it in my defiant youth and then when I matured and “accepted” my fate and tried to better understand my particular “brand” of Crohn’s Disease, it was overwhelming especially when some of my experiences were unprecedented, at least prior to the proliferation of health care social media, when strange reactions to IBD medications or bizarre Crohn’s Disease manifestations and compilations became topics bandied about in various Tweetchats.
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 Disease which greatly affect young adults who are normally not yet established in a particular community due to their understandable aspirations to go to the most appropriate graduate school, no matter where it is located, and/or to pursue professional career opportunities for which they are trained, also often requiring relocation to a different state, wherever, and whenever such opportunities exist. Keeping track of all the different doctors, hospitals and medical tests along the way becomes secondary to enjoying the healthy times and such a painstaking record-keeping routine can also be psychologically stinging and the result is incomplete patient histories for a subset of patients who arguably need them the most.
That’s exactly what happened to me as the 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, the unpredictability of Crohn’s Disease and the medical mayhem it has wreaked in my life also interrupted business trips and planned vacations necessitating the creation of some type of hospital, clinic or medical practice “patient record” in places such as Portland, OR, Dothan, AL, Amarillo, TX, South Lake Tahoe, NV, Reno, NV 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 (by way of reference, 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 and excessively exposed.
The great singer, songwriter, performer and writer, Jimmy Buffet once wrote: **“Scars are just permanent reminders of temporary feelings.” This is relevant here because by moving to California at that time in my life to pursue a professional endeavor, I had created a situation in which I had possibly made myself much more medically vulnerable than was necessary. More specifically, the only way I could reliably stave off additional intestinal surgery in an emergency situation to an “LA surgeon” (assuming it was not Mr. Jimmy Buffet) who knew nothing about ME, other than his or her stark first impression after seeing my zipper-like abdominal scar and surmising I likely had an aggressive case of “obstructional” Crohn’s Disease which was now about to be bi-coastal, I had to demonstrate “the medical expert in me” and quickly communicate Mr. Buffet’s sage observation to buy myself a few days of conservative treatment. Displaying that empowered patient “persona” would only be effective if I traveled with some type of “official-looking” chronological listing of all my surgeries or I possessed a detailed note from my lifelong gastroenterologist which conveyed the nuances of my disease.
Despite my pronounced scar, such precise paperwork would give me that rare second chance at a first impression with the LA surgeon. In fact, I was an engaged patient and “on top” of my disease (sort of, as you will read below) because knowledge really is power when dealing with an illness as mercurial as Crohn’s Disease. Mr. Buffet’s line only goes so far in spite of its dead-on portrayal of a patient with a pretty damn positive attitude. Accordingly, I had performed some research on the Internet prior to making the cross-country sojourn to my new apartment in Santa Monica, California 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, just prior to “leaving town” [ok, it was New Jersey, but you’d never see that reference in an Eagles’ song], 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. I did, however, familiarize myself with the present state of my gastrointestinal system after so many surgeries so that I could converse intelligently about it with my new gastroenterologist in California. 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 [Don Henley I was not, but “Mighty” Max Weinberg, perhaps, as I was very friendly with his wonderful mom, Ruth, and somehow it seemed more realistic], 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 what I like to refer to as “the crowdsourcing of patient data” for the purposes of developing 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 possibilities after receiving 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 rather intensely focused 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 (i.e., disease) areas of research.
The knowledge I gained about the overall United States medical research process was invaluable and that was just from listening to the country’s brightest scientists “talk shop” during our lunch and dinner sessions. 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 daily 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 numbers of some type of standardized patient histories 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. These men and women were DRIVEN and “obstacles” were looked upon more as “challenges.” I left Washington, D.C. absolutely inspired about the medical breakthroughs sure to result from many of the brilliant, dedicated scientists I was privileged to meet as a DOD CDMRP PRMRP consumer reviewer.
“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 her experiences with the disease made a huge impact upon her dad, Gary Sinderbrand, such that he started Betterpath to generate better data that actually improves treatment outcomes and to empower people with their own information so they can manage their own care. I thought those were incredibly sound and forward-thinking reasons to start a company and if proven possible, I wanted to learn more.
I am also of the belief that the conventional treatments for Crohn’s Disease and Ulcerative Colitis are relatively archaic and seemingly frozen in methods and technologies from the past as many IBD doctors still seem to play “not to lose” when I think it is fair to say that many current patients wish they were more positive and “played to win.” I recognized that optimistic approach in Alexandra’s description of Betterpath. I had become familiar with it when I met the highly motivated scientists in Washington, D.C., as each scientist ultimately demonstrated an understanding of the impending possible achievements of the application of technology to medicine. Betterpath seemed predicated on that same logical and inevitable “positivity” of mixing technology with medicine and it was much welcomed news. 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 merely listing 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, it is now possible for me to “own” those “stacks” of medical records and to quickly and comprehensively understand my medical history and for my doctor to easily understand the Crohn’s Disease “story” actually told by those stacks of records. Betterpath makes medical histories “come to life” by way of a “better [digital] health story” which any doctor could easily understand. It seemed so fresh of a take on the value and precision-potential of patient data, I think even Jimmy Buffet would approve. I became further 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.
THE PATIENT PERSPECTIVE:
BETTERPATH “PATIENT SUMMARIES”
When I explained the innovative 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: “Michael, if they can organize your 30 years of medical records into a comprehensive and easily understood digital file by which 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. 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 IBD and IBS 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 to 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 OTHER PATIENT SUBSETS but at this early-phase Betterpath is mastering the application of its proprietary technology to IBD and IBS 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; and
- 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.
**“A Pirate Looks at Fifty,” by Jimmy Buffett. [GREAT BOOK]