From Managed Care to ObamaCare to “Smartphone Medicine”

Healthcare Hashtags & Social Media Analytics

Healthcare Hashtags & Social Media Analytics

After suffering through Managed Care and now living through remedial intended ObamaCare, the United States has entered the first truly exciting times of global healthcare.  The innovative spirit prevalent in the United States is due to the convergence of eHealth and mobile health, the emergence of healthcare entrepreneurs combined with the proliferation of global health care social media platforms such that technology has democratized the practice of medicine for healthcare professionals, patients, institutions, pharmaceutical companies and health insurers.  Given the role of the Smartphone in this transformation, I think it is apropos to refer to this pioneering period of healthcare as “Smartphone Medicine.”    

Managed Care

Pardon my candor but Managed Care sucked.  It sucked for patients, doctors and hospitals.  Other than that, it worked just fine.  More seriously, if you did not obtain the appropriate “referral” prior to seeing a specialist (even in an emergency), the cost of seeing that specialist was either not covered by the health insurer or it was reimbursed at a significant lower amount than the actual charges you had to pay.  There were also pre-defined “in-network” physicians and a formulary of drugs, and with few exceptions, your medical universe was defined by various managed care contracts, the negotiation of each you did not participate in.   If you had surgery, it was common for your managed care insurer to have “in-network” contracts with some, but not all, of the anesthesiologists working at that hospital.  However, you had no control over which anesthesiologist treated you. Therefore, the actual cost of your surgery wasn’t determined until the medical bills started piling up in your mailbox. If you tried to politely request a specific anesthesiologist within your managed care health insurance network to somewhat control the cost of your surgery, you were taken as seriously as Kim Kardashian showcasing her acting chops on “The Kardashians” as her audition tape for a new Martin Scorsese Oscar buzz-worthy movie.

If you had a long-standing relationship with your primary care provider, there was no guarantee you’d be able to continue that relationship.  It all depended upon whether or not he or she “participated” in your insurance plan and was considered an “in-network” physician.  Some devious physician staffers would address such telephone queries with the vague declaration that their physician “participated” in your plan but they passively omitted the detail that he or she participated in your plan as an “out-of-network” physician!

Then there were similar passive “omission deceptions” on your health insurer’s website such that you’d be confident the post-operative occupational therapist you chose from your insurer’s website was “in-network” only to find out later her contract had expired and your insurer had not yet updated its website when you made your selection.  Despite this material error by your health insurer, you were nevertheless liable for the total cost of the occupational therapy, as if you purposely chosen someone “out-of-network” due to their unique high level of expertise, and were willing to pay extra for that added benefit.

The physician “con job” referred to above stung me only once when I had a very expensive Crohn’s Disease surgery based on that deceptive representation.  It wasn’t until I formally alleged “Criminal Fraud” in one of the MANY appeals I had to pursue seeking 100% reimbursement of the cost of the surgery (i.e., as if the doctor was, in fact, “in-network” with my health insurer) when I finally prevailed and exposed this misleading representation.  But many smart patients were directly or indirectly taken advantage of by money-hungry or irresponsible doctor offices and health insurers who banked on the arduous hassles of the appeals process being too steep a barrier for the patient to initiate, and keep pursuing, a meaningful appeal seeking reimbursement based on fraudulent representations.

There were also financial limits on how sick you could be, as if knowing these actuarial generated projected financials would impact your decision to, for example, undergo chemotherapy, when it was recommended by your doctors as the only way to save your life, and by doing so you would surpass your lifetime allocation of financial health benefits and be liable for the balance.  Finally, if you had a chronic illness prior to obtaining your managed care health insurance plan, it was probable that any charges accrued in treating that “pre-existing condition” would be excluded from your health insurance coverage.  Since the increasing costs of managing that pre-existing condition was likely the primary reason you sought health insurance, the fine print of many managed care health insurance plans made as much sense as selling Sexual Harassment Insurance to radio personality Howard Stern’s female sidekick, Robin Quivers.

ObamaCare

ObamaCare, a/k/a, The Affordable Care Act (the “Act”), identified the aforementioned Managed Care issues and sought to improve upon them so that more people could obtain more reasonable health insurance coverage at a more affordable price.  ObamaCare also sought to correct the gross inefficiencies present in American healthcare as a result of a Managed Care system which was largely unaccountable to any laws or governmental agency.  The Act utilizes market forces to stabilize the cost of health insurance policies and mandates that all health insurance plans include reasonable wellness provisions.  Finally, as a self-policing measure, ObamaCare created “Accountable Care Organizations” (“ACOs”) to ensure that larger medical practices and institutions routinely examined their costs and expenditures in a practical attempt to eventually reduce the aforementioned gross inefficiencies prevalent throughout the American healthcare system.

The Act seems to be making a substantial improvement in restructuring and regulating what was one of America’s fastest growing but difficult industries in terms of tracking and appeasing its diverse stakeholders.  However, there are political influences which prevent ObamaCare from being universally implemented and that likely affects its projected initial performance.  This largely remedial Initiative was also hampered by a slow and glitch-filled roll-out which has affected its acceptance by Americans as “the law of the land” and, instead, in some parts of the United States it is viewed by many as a law in effect because of the current political party running the country.  That said, even the most skeptical of patients and doctors would have to agree that ObamaCare is better than Managed Care and it has at least identified American Healthcare as a viable and potentially profitable industry.

Practical changes, as opposed to political “considerations,” must be made to the Act, however, to refine it, just like with any other remedial official government measure.  But at least ObamaCare is a start in the right direction and it also has the good fortune of being implemented at the same time technology and electronic medical records have improved convenience and enhanced quality of healthcare experiences and opportunities.  These experiences and opportunities have attracted healthcare and technology entrepreneurs who have combined their efforts to, in essence, create “American Healthcare 2.0” which includes innovative electronic (“eHealth”) and mobile health (“mHealth”) products and services.

Smartphone Medicine

The aforementioned eHealth and mHealth opportunities seem to be driven by the technology enhanced Smartphone because it has become the tool which has democratized the practice of medicine to the point where the doctor-patient relationship is now one of collaboration and mutual respect.  The proliferation of different global health care social media platforms has created empowered patients who conceivable use their Smartphones more to engage in healthcare Tweetchats than in telephone conversations.  Furthermore, there has been an explosion in the number of useful and generally accepted “Medical Apps” available on the different Smartphone operating systems like the Hospital Patient Picture-Sharing Medical “App,” “HospitalPIX,” which was developed by Dr. Jacques Durand (pictured below) [you can click thru the picture and watch my interview with Dr. Durand from this year's "Doctors 2.0 & You" in Paris, France].

HospitalPIX Medical Smartphone App

Additionally, bold and innovative initiatives like “The Healthcare Hashtag Project,” by the company Symplur  [you can click thru the picture above, before the first paragraph and watch my interview with Thomas Lee of Symplur from this year's "Doctors 2.0 & You" in Paris, France], have transformed the Twitter experience when it is used for healthcare purposes so that it’s more accessible and more time efficient for healthcare providers and for the healthcare community as a whole.  Since people tend to use their Smartphone to tweet and use Twitter, this is another example of Smartphone Medicine.

Smartphone Medicine enhances the Lifestyle of the Chronically Ill

For a chronic patient like me with the autoimmune illness Crohn’s Disease, using my Smartphone in conjunction with hashtags creates a global support team to whom I can turn with questions about new treatments for Inflammatory Bowel Disease (“IBD”), side effects of new drugs, recommended doctors for a specific procedure, a list of hospitals with IBD Centers and recommended IBD specialists in an area of the world where I might be vacationing, etc.  Moreover, I can load my Smartphone with all of my electronic medical records along with years of blood test results, Operative Reports from my 25+ surgeries and a list of the drugs I am currently taking.  I can also always use my Smartphone to contact my doctors whose information is always only a few strokes away.

The Power of the Hashtag in Smartphone Medicine

In terms of the use of hashtags on Twitter, according to Symplur: “By lowering the learning curve of Twitter with a database of relevant [healthcare] hashtags to follow, we hope to help new and existing users alike to find the [medical] conversations that are of interest and importance.”  Accordingly, whether directly or indirectly as a result of Symplur’s extraordinary success simplifying Smartphone Medicine through the use of hashtags, the hashtag is now routinely used in powerful global social media platforms such as Facebook, Google+, Twitter and Instagram.

Conclusion:

Because of Smartphone Medicine, the Prognosis for Global Healthcare has never been more Promising

The bottom line is that the convenience of Smartphone Medicine is liberating for patients who suffer from chronic, serious or autoimmune conditions which would otherwise require substantial record-keeping in different locations. Thanks to the efforts of companies like Symplur, the hashtag simultaneously encourages the use of global connections and conversations while also arranging them so they are directly on-point and easy to access.  Smartphone Medicine appeals to healthcare professionals because it is innovative, efficient and makes for better educated professionals who then can service their patients to the best of their abilities.  It has certainly been a long, strange trip from Managed Care to ObamaCare to Smartphone Medicine, but isn’t it always about the journey and not the destination?  In that regard, we don’t know what will come next but at least we do know that the prognosis for global healthcare has never been more promising.

Smartphone Medicine

Smartphone Medicine

Patient’s Most Valuable Tool is still The Question

The Question is the patient's most valuable tool

The health CARE Burden has now shifted from Doctor to Patient

Patient Questions

Doctor, can you please spell the name of that disease?  Is it chronic?  What are my treatment options?  Should I be seeing a specialist or are you the doctor to treat me?  Should I seek a second-opinion?  Are there additional diagnostic tests I could undergo?  Can it lead to additional medical problems? What medications must I take?  Are there generic versions of those drugs?  What is an autoimmune disease?  How did I get it?  Will my children develop it?  Should I have children with this chronic, autoimmune disease? What’s the future prognosis?  Are genetic treatments being developed?  What about stem cell treatments?  What about experimental medicine?  Can I get into a medicine trial?  Are my options greater if I go to Europe?  My insurance requires “Prior Authorizations” for those tests, can your office help me with them?  Am I disabled?  How do I apply for federal disability?  Do I have to pay for the medical qualifying letters you must write on my behalf?

How invasive is the surgery?  What about the anesthesia?  How much pain will I be in after the surgery?  Should I consult with a Pain Management Doctor? How long will I be in the hospital?  What determines how long I stay in the hospital?  After discharge, what are the danger signs I should look for?  What are my physical restrictions? I have a problem with that medication, what substitute can you give me?  Do I now have a higher probability of getting cancer because of this diagnosis?  What can I do to lessen those chances?  Should I change my diet?  Should I hire a nutritionist?  Why was I treated in the hospital by a “hospitalist” instead of you?  Can I just stop taking that medication or must I wean off if it?  If the side effects are so horrific, why must I take that medication?  You are offering me very difficult treatment choices, how do I choose one?  Will you choose one for me?  What has worked best with other patients facing the same medical problem?  May I use medicinal marijuana to treat the nausea?  How do I get the disease?  Should I see a psychologist or a psychiatrist?  What is the difference between the two?

Professional Patient Comment

I want to try the medication I saw advertised on TV; may I?  Why not, it seems to be a panacea?  This is what I’ve learned in the Internet, what do you think?  What are the best Internet sources for my disease?  Why can’t you recommend one?  What does patient-centric mean? Why can’t I take pictures inside the hospital? Why must I follow you out of my hospital room to finish asking you questions? Why are the agreed upon medical orders not carried out after you leave my hospital room?  What’s the best Smartphone App for my disease?  Why can’t you recommend one?  Who can?  May I text you with simple questions?  May I get a copy of my blood work?  Can’t it just be automatically sent to me, as it is my blood after all?  My child feels as if there is no “plan” in the manner in which his autoimmune disease is being treated in the hospital; what is the plan?  The pain medication helps, and I appreciate it, but what is treating the underlying illness?  Is there a national organization for my disease?  What type of patient support programs are available for me?  Can you recommend me to another one of your patients who’s willing to speak with me before you operate?

What about alternative medicine like acupuncture? What about over-the-counter supplements? Why don’t you believe in them when I read so many positive patient stories on the Internet?  Why must I make an appointment when all I have are a few questions?  Why don’t you have a website? What is a Nurse Practitioner?   What is a Physician Assistant?  What is the difference and why am I seeing them and not you? Is it time for me to change doctors?  Would you tell me when it is time to change? How many complex cases like mine have you treated?  Which doctors cover for you when you are not working like on certain nights and holidays?  May I meet them?  Are my electronic medical records safe?  If something happens to me on vacation in California how long would it take to get them my electronic medical records?  Should I be keeping a food diary to try and help you figure out what’s causing my problem?  How do I handle the depression from the medication?

Conclusion

I could go on and on as a 30-year Crohn’s Disease patient who’s undergone 25+ surgeries, 200 hospitalizations and countless “state of the art” treatments.  I’ve been hospitalized in local hospitals, disease destination hospitals and world renowned facilities and the patient’s right to ask questions is, by far, the most powerful tool in medicine, even in this age of ePatients, brilliant mobile health initiatives and the seemingly endless stream of technological advances.  However, maximizing the strength of this patient tool is 100% dependent on maintaining a respectful relationship with your healthcare provider.  This means you must always be considerate of his or her time.  I’ve been able to do this by writing out my questions beforehand and having someone else at my side when the answers are given to me.  It also helps to organize EVERYTHING from simple blood tests to operative reports.  Purchasing a Scanner will enable you to do this efficiently.

The health CARE burden has now shifted from the doctor to the patient.  Physicians are still certainly responsible for treating medical problems but patients are responsible for their well-being, to the extent that is humanely possible.  Asking well thought-out questions and organizing the information obtained is essential.  To that end, a command of the latest technology advancements is important as different devices such as a Smartphone, Scanner and Medical App will make the patient’s new burden easier to bare.  

 

Healthcare Innovators from Doctors 2.0 & You (2014)

This Interview is with Dr. Jacques Durand, Founder of the hospital patient picture-sharing “app” called “HospitalPIX” and BlaBlaDoctor, the first global health social network committed to provide independent hospitals and treatments reviews.  Dr. Durand is a practicing French physician based in South East Asia but he’s also a Social Media Expert and has devoted his life to advancing healthcare online.  In addition to HospitalPIX and BlaBlaDoctor, Dr. Durand’s company, HEALTH2i, has also formed an mHealth platform called “DokterGratis” which enables Live Chat on Smartphones between Patients and Indonesian General Practitioners.

Here’s my last six (6) Interviews from “Doctors 2.0 & You,” which took place on June 5th and 6th in beautiful Paris, France.  While editing the footage required painstaking detail and a significant amount of time, I learned a great deal about healthcare innovation and about the individuals and entrepreneurs responsible for these innovations.  The most successful healthcare innovations seem to be updated iterations of ground-breaking ideas which either rose out of great adversity or practical necessity.  Either way, it has been an incredible experience to fly to Paris, France simply on my word that I’d interview fascinating people at the Conference and then somehow transform that into entertaining content.

The person who trusted me to do that was Denise Silber and I want to thank her for somehow intuitively seeing my vision, perhaps, before even I saw it.  I also want to thank Denise for creating an experience for me worthy of lifetime remembrance.  Finally, I want to thank the folks who took a few minutes out of their precious time at such a prestigious Conference to talk with me.  I also want to apologize to the MANY people at the Conference with whom I did not have the opportunity and privilege to interview.  Hopefully I will be honored to have this opportunity at next year’s “Doctors 2.0 & You” and then I can rectify that situation.  :)

Making Urology “Apps” seem interesting is not very easy but this Interview with Erich Taubert MD, CMO & Co-founder of “synappz medical apps IS because it is with such a gregarious and compassionate physician and besides, IMHO, Medical “Apps” are going to be a substantial part of the future practice of medicine. Dr. Taubert is also a Consultant Urological Surgeon. He and his team at synappz won the prestigious Start-Up Contest at Doctors 2.0 & You a few years ago and came back this year with a new and more innovative app. You can find more information about it at the website, papp.me.

This Interview is with Johannesburg, South Africa-based “Facial Difference” elegant and courageous Advocate, Vanessa Carter. “Facial difference” is a catch-all phrase for facial deformity and facial disfigurement. These conditions can be caused by many things such as craniofacial anomalies, trauma, burns, rare disease, cleft lip & palate, cancer, etc. In 2004 Vanessa Carter had a major car accident which caused substantial facial & internal damage. It took her 10 years to correct the facial damage involving many surgeries, implants, hospitalizations, medications, infections, etc. Not only did she experience the usual pain of trauma-induced facial disfigurement and the attempted corrective surgeries, but due to the lack of the public’s awareness of facial difference, she also suffered such severe emotional and psychological distress that she was disabled as a result of being judged by her altered physical appearance.

Anyone WITH Multiple Sclerosis (MS) who is thoughtful enough to write a children’s book to help her daughter cope with her own MS diagnosis is an honor to meet and interview. I had that privilege recently when I interviewed Jamie Tripp Utitus.  The book is called, “Zoe Bowie Sings, Despite All Sad Things,” and her MS Blog is located at UglyLikeMe.typepad.com. While she manages almost one hundred (100) international-networked MS blogs, Jaime’s popular Blog is called “Ugly Like Me.”  PLEASE do yourself a favor and read her Blog and/or Children’s Book because she’s truly an excellent writer. The Children’s Book, Zoe Bowie Sings, Despite All Sad Things,” is about a young girl whose mother is diagnosed with Multiple Sclerosis shortly after the birth of her baby brother. The book is illustrated by Johnny J. Keane.

This Interview is with Dr. Frederic Llordachs, Global Business Development Manager, Doctoralia.com. Doctoralia.com is an International Healthcare Directory presently available in twenty-one (21) countries, each having their own local Doctoralia version. Since healthcare is different in every country, Doctoralia  adapts its platform accordingly to offer everyone the best experience in Doctor search. Doctoralia was founded in 2007 by a team with years of experience in both the healthcare and Internet industries. Its mission is to become the world’s leading destination for patients finding/scheduling with healthcare professionals and facilities through the Internet.  By way of reference, 11 million Users utilize Doctoralia every month to reach doctors in their countries.

This Interview is with Ben Nowell, MSW, PhD, Director, Patient-Centered Research at Global Healthy Living Foundation, Inc. [GHLF - a 501 (c) (3) non-profit organization], whose mission is to improve the quality of life for people with chronic illnesses. The current Patient-Centered Research for inflammatory arthritis is funded by the Patient Centered Outcomes Research Institute (PCORI) and is a partnership which includes the CreakyJoints.org patient community and its parent corporation, GHLF. CreakyJoints, the flagship arm of GHLF, sustains thousands of engagements a day through its social media channels, serving as a model for interactive delivery of patient education, support services, advocacy efforts and research opportunities.

Healthcare Innovators from Doctors 20 Comments

Must ePatients embrace mHealth w/ caution?

Phone Health Image

First, the Music Industry was transformed by technology

Back in college, I was a serious music fan and collected “Albums” for the entire experience of reading the linear notes while listening, and possibly even using, the rare double album cover for more nefarious and deleterious purposes.  These days, at least one of those purposes is considered “medicinal,” so, in retrospect, maybe I wasn’t the outlaw, The Allman Brothers’ double album, “Eat a Peach,” made me in my mind.  As time went by and 8-track tapes became as hard to find as talent when Kim Kardasian looks in the mirror, no one ever thought Albums would go away.  Ergo, the emergence of the “Record Collection.”  But, the technological advancement from analog to digital imbued the emergence of the Compact Disc or “CD.”

New Technology creates Consumer Convenience before improved Music Quality

Record labels convinced us all that the digitized music tracks on CDs resulted in a better listening experience and one which more closely resembled the recorded performance. But the truth is that technological progress [in this case "digitalizing"] seems to always first focus on “convenience” before it improves quality.  That second part is undertaken by entrepreneurs whose divergent interests range from plain old capitalism to humanitarian purposes.  They apply the technological advancements to push boundaries and improve products and services then charge consumers a price for their innovations which is commensurate with the perceived improved quality or enhanced consumer experience.  Ergo, the evolution of the “CD Collection.”

Discovery of  the Internet results in “compressed” MP3 Collections 

With the advent of the “Internet Super Highway” came entirely new possibilities and streamed MP3 music files emerged.  But “streaming” was in its infancy at the time and the music files had to be “compressed” significantly to reach the consumer.  [These same streaming limitations are what delayed the Internet's effect on Motion Pictures as the size of movie files was too large to stream.] That “compression” technically meant consumers would not hear all of the recorded performance but they’d hear just enough to be satiated to justify both the convenience of “compressing” their CD Collections into tiny MP3 files which all fit into a handheld-sized device called an iPod.

The REAL Cost of Compressed MP3 Files – Missing Out on Audio HD

However, the real cost of this technologically-driven convenience was them missing a masterful performance by an “artist” like Neil Young, who recorded it in its entirety including every possible sound “byte” to elicit a brain-pleasing, emotional-participatory musical experience.  True artists like Mr. Young were perturbed that their formidable contributions to an art form were being converted to relative tiny MP3s which then became just a part of different aisles in “virtual music stores.” But streaming capabilities were not then capable of streaming High Definition NetFlix movies like they are now in 2014.  So, just like with the initial allure of CDs, consumers did not notice a trade-off between the Jetsons-like convenience of shopping at the iTunes, K-mart and Target MP3 stores.  Then virtual stores like iTunes superseded niche retail chain stores such as Tower Records, Sam Goody, FYE and Suncoast, each of whom were dangerously solely dependent on the sales of CDs.

In the process of vaporizing these long-standing businesses, iTunes thrived while Hollywood romanticized the passing of the local “record store” in the 2000 “dramedy” homage, “High Fidelity,” starring John Cusack, Jack Black, Catherine Zeta-Jones and Tim Robbins.  The pervasive presence of “virtual stores” so radically changed global economic storefronts that the term “brick and mortar” was then invented to differentiate between the two.

Significantly improved Streaming capabilities breeds Audiophiles & the creation of  Audio High Definition

Cut to 2014 and the current unpredictable but overwhelming streaming success of NetFlix high definition movies becomes the impetus for Mr. Neil Young to gain back his art form contributions and then distribute them at the high quality they were made to be listened to so that listeners could hear ALL that he recorded in “Audio High Definition.”  Since the only limitation in the past was the size of the streamed file, Neil Young and his audiophile brethren seem to have created yet another music format “Collection” to pursue for a new generation of music fans.   To ensure consumers have a High Definition Player to listen to the Audio High Definition recordings of his performances [which are much larger files to transmit and play because each song file contains significantly more sound bytes than an MP3 file of the same song], Neil Young crafted one of the most successful Kickstarter campaigns with his idea for the PONO player.

From 8-Track to Album to CD to MP3 to Audio HD Collections

There are now virtual stores which sell Audio High Definition recordings and just like when the consumer jumped from records to CDs, then CDs to MP3 files, there are consumers re-purchasing their Album and CD Collections in this supposed “purest” of audio formats.  Accordingly, just like with the creation or enhancement of other products or services due to technological advancements, some entrepreneurs have figured out how to utilize the new technology to pair convenience with enhanced quality and they charge a premium for it.

In short, this is how the music industry has been transformed by technology and the only constant has been “Buyer Beware” at every single, seemingly, “innovation,” which was just “consumer convenience” sold as “progress” when nothing could be further from the truth as revealed by the soon to be new music format craved by music fans, namely, Audio High Definition recordings

Now, mHealth [mobile health] transforms Healthcare

Healthcare now faces the nascent technological transformation which the music industry survived. It extends to Healthcare’s delivery, quality, cost and access, and affects its healthcare professionals, patients, institutions and insurers.   In that regard, and from the Patient Perspective, becoming an ePatient was just as necessary in 2010, as adapting to CDs was for teenagers all over the world in the early 1980s.  In 2014, however, it is now necessary for patients, especially those with chronic diseases, to master the capabilities afforded to ePatients by mHealth platforms, services and devices because with Smartphones being so adaptable to any medical or hospital patient’s conceivable need or want, smart entrepreneurs have finally gravitated to this current opportunistic time in Healthcare.  However, many of these same entrepreneurs are also gravitating to physicians, institutions and health insurers to do the same for them via mHealth initiatives.

My concern is that mHealth innovations which facilitate patient care could enable physicians, clinics and hospitals to treat more patients [which is good] and make more money via this new revenue stream [which is none of my business] but possibly all at the expense of existing patients like me [my primary concern].    

May be a Stretch but ePatients must watch mHealth innovations carefully

To that end, chronic patients MUST stay up-to-date on mHealth innovations to both take advantage of the mHealth initiatives which help them and to be aware of the ones in which they passively help create new revenue streams for doctors, pharmacists, hospitals and insurers possibly to the detriment of their quality of healthcare.  That said, I believe these healthcare professionals deserve to make more money and they should pursue any and all available revenue streams created by technology and mHealth.  In my humble opinion, their continued dedication to the practice of medicine and to the welfare of their patients, despite enduring modern-day times of economic unfairness and uncertainty in the healthcare industry, entitles them to do so.  I just don’t want to see my healthcare compromised in any way, shape or form during any such process.

Conclusion

Analogous to what happened when technology transformed the music industry, I don’t want to be lulled in by mHealth “convenience initiatives” which are mendaciously disguised as “innovations” to the impairment of my healthcare quality or access.

Ever since being diagnosed with the autoimmune illness, Crohn’s Disease, in 1984, like music great Joe Walsh, I’m an “Analog Man.”  In mHealth and healthcare jargon, this means I can’t afford to lose the genuine personal interactions I’ve had with kind and compassionate healthcare professionals who’ve helped me move forward in life despite frequent, unpredictable medical adversity involving various body parts and systems.

Professional Patient Perspective Comment

Crohn’s Disease: 3-year old talks about his Dad’s illness

“I can handle things! I’m smart! Not like everybody says… like dumb…”

It’s two (2) more years till Kindergarten, and I am already SO over Fisher-Price toys and smiling on-command every time one of my Mom’s friends talks gibberish to me just to make me like her.  Everyone does that to me; even my aunts and uncles.  I don’t get these people; just because I don’t talk, doesn’t mean I don’t understand everything they say.  Still, people visiting my house have more interesting conversations with our dog, “Lucky,” than they do with me.  Do they think I can’t keep up with the Kardashians?  Just like the character, Fredo, from “The Godfather:” “I can handle things! I’m smart! Not like everybody says… like dumb… I’m smart and I want respect!”

Weiss goes to Washington 

My Dad’s the BEST but he’s sick & often disappoints me

I know, three (3)-years old is a bit young to be quoting “Godfather Part 2” but my Dad watches that same movie, over and over again.  It’s how we bond.  When I’m not sleeping or cranky because I‘m too lazy to walk to the bathroom and I have an “accident,” we watch “GF2” together, each time with me on his lap.   It’s our special time together and while I love spending “alone time” with my Dad, I don’t know how to convey to him my fear of sounding like a gangster when I’m finally able to talk in complete sentences. Compared to the dads I see on television, my Dad is GREAT but he’s often not feeling well and that means he frequently has to cancel fun plans we have together like going to Disney, attending a Mets game, having a catch at our local park, going camping, etc.  I really don’t mind because he’s my Dad, my bestest of best friend and I love him more than any of my Marvel Lego Superheroes but it’s frustrating getting excited to do something fun with him and then unpredictably having to stay at home only to play with Lucky.  No one I know has a sick dad so I really can’t talk about it with anyone.  Even if I had friends and told them about my Dad’s health issues, they’d only remember that he often disappoints me and that’s not a fair depiction of the situation because he doesn’t intend to disappoint me.  It’s all because of some illness he has.

Most times it has something to do with his stomach and he winds up spending an inordinate amount of time in the bathroom, but whatever it is, it also affects his entire body and influences his ability to heal normally from simple bruises, any kind of inflammation and even from common conditions like the Flu.  He also gets SO TIRED, sometimes shortly after waking up after a good night’s sleep, such that we are starting to think he suffers from some sort of rare allergy.  Equally frustrating is watching Mom and Dad enjoy a night out with friends on a Friday only to have Dad tell me the next morning on Saturday that he suddenly doesn’t feel well and must cancel our plans, for example, to teach me how to fish.  He then spends the entire day in bed sleeping and only gets up to go to the bathroom.  The frustrating part is that he doesn’t look sick and it was only the night before when he felt well enough to go out with his friends.  In no way am I suggesting my Dad is lying to me; I’m just trying to explain that whatever illness he has, it’s extremely difficult for doctors to diagnose due to its unpredictable presence and multifaceted symptoms.

MAW at 3 drinking Aug 18 2014

My Mom also always brags about how great an athlete Dad was when they met back in college but in addition to the gastrointestinal problems, he gets crippling rheumatic-type joint pain.  Yet, every orthopedist he’s seen gets baffled by his condition since every diagnostic test is normal but Dad’s in too much discomfort to continue playing basketball or tennis.  Sure, he can still play those sports with me but I want to see him happier playing ball with his buddies.  He’s only 32 years old and looks completely fine and if you weren’t around him all the time, you’d never believe how much he suffers.  He’s even been hospitalized for just the joint pain several times and I’m not so sure the doctors knew what they were treating.  If he could only continue playing sports with his friends and take control over at least his physical fitness, I think he’d be so much happier but this medical problem he has doesn’t even permit that.

Professional, Social & Familial effects of this Unpredictable Illness

After being exposed to my Dad’s unusual medical problems since I was born, I was familiar with his lack of control over both the symptoms and when they occurred.  When I was very little, I remember crying every time I saw my Dad in pain and then worrying about it whenever he was fine, always expecting him to get sick.  Mom soon intervened and explained to me how she and Dad were trying very hard to figure out why this was happening to Dad and she assured me they would have an answer that would get him better shortly.  She even playfully referred to what they were doing as embarking upon a “diagnosis journey.”  That made ME feel better but I worried about how the other people in Dad’s life felt about it like his employer from whom he had to frequently take sick days even though he looked fine the previous day at work or his business colleagues who must have wondered about the veracity of his sick day claims.

Explaining the “Diagnosis Journey” to preserve Friendships

This same skepticism was always present amongst even his oldest and closest friends who often couldn’t understand what was happening to my Dad.  In order to preserve many of my Dad’s friendships, my Mom had to explain to his friends all they were doing to try and figure out what was wrong with Dad.  His closest friends finally understood but I could see with my own eyes how my parents’ social circle was slowly shrinking as many “acquaintances” found it unrealistic how my Dad could be the “life of the party” one night and bedridden the next.

Even my Dad’s own family started doubting him when he couldn’t attend various important family functions and had to cancel at the last minute.  My Grandparents, however, listened to Mom and eventually the stories she told them about Dad jogged-free some long-ago forgotten memories they had of my Dad’s youth when he had demonstrated similar behavior like abdominal pain, extreme lethargy and inexplicable joint pain.  But they explained to Mom that Dad had been a prolific athlete as a kid and he always seemed so happy so they never had reason to investigate any further.

But now my Grandparents felt terrible that they might have missed something in my Dad’s teenage years which, if brought to the attention of a doctor, might have spared Dad so much suffering.  But Mom told them if it took doctors years to figure it out now, there’s no way they would have identified it back then.  Oddly, I think that experience brought my Mom closer to my Dad’s parents because they respected all my Mom was doing to help my Dad figure out what was wrong and also because she spent a great deal of energy trying to explain it to everyone else in his life.  They were 100% behind Mom and Dad’s “diagnosis journey.”  His two (2) sisters, my aunts, however, were very skeptical and this always created tension at family functions. Mom never explained to me why Dad’s Mom and Dad were so supportive yet his sisters were not but I think it has to do with more grown-up stuff involving jealousies, ego and spousal issues.

MAW at 2 and one half Aug 18 2014

Digesting Popcorn marks the end of the “Diagnosis Journey”

Given that I’m still refining my walking skills and repeatedly fall when I get adventurous and try to change direction, I don’t have many play-dates so my best friend is my Dad.  Even though my name is “Michael,” he always calls me “buddy” or “pal.” When he does “fix-it” work around the house, I just sit and watch, but he makes me feel like WE finished building that bookcase or model airplane.  But I’m worried about him.  I don’t have much experience being around adults but it can’t be normal to have so much energy one day and then feel so tired the next that you can barely walk up a flight of stairs. In fact, when my Dad gets that tired, he always says the same thing, as if each time is the first time he suffers from such extreme lethargy and he’s marveling at its pervasive and comprehensive grasp on his ability to function normally: “My legs feel like they weigh 1,000 pounds each.”  Then there’s the bathroom trips.  Some days he’s completely normal and we have so much fun together but more often than not he’s racing to and from the bathroom. Sometimes he may go 20-40 times a DAY and afterwards he’s always drained of energy.

But just the other night, things clearly entered a new phase in terms of placing a name to my Dad’s medical problems.  Me, my Mom and Dad were hanging out in the living room watching a pay-per-view movie and eating popcorn trying to relax.  But I could “smell” that my Dad was having “accidents,” just like me.  I wanted to loan him one of my diapers, which I had thankfully grown out of, but there seemed to be more going on with him on this particular night than just his frequent trips to the bathroom.  He soon began having such severe abdominal pain that it became noticeable and my Mom told me it was time for bed and brought me to my bedroom because I kept asking her with increasing concern, “What’s wrong with Dad?” It was very scary to see my Dad in such a painful and vulnerable position.

Before my Mom got me out of the room, however, I caught a glimpse of my Dad lying on the floor in the fetal position trying to “bare down” on what seemed like intense cramps.  I had seen him do this before and once he explained what he was doing but I never saw him do this with a look in his eye like he wasn’t sure the cramps were ever going to end.  Even though my Mom led me up to my bedroom and smiled the entire way like she was taking me to a party, I could sense her fear as well.  After she made sure I was otherwise occupied with a video game, she returned to my Dad in the living room and I secretly followed behind her so I could see my Dad.  When I carefully peeked into the living room, I saw my Dad groaning in pain and even crying.  He was still lying in the fetal position and I heard my Mom tell him she had never seen him this bad and she was scared so she was calling an ambulance.

I never saw Dad cry before and that petrified me.   I guess my Mom felt the same way and in just a few minutes an official-looking van with rotating and flashing lights came to the house to pick my Dad up to take him to the nearest hospital. There was a sense of urgency to the situation as each person who came with the van apparently had a specific responsibility yet everyone calmly but deliberately completed their tasks.  But my Dad had everyone stop for a moment when he looked at me and told me not to worry, even as he held his stomach with one hand and tried to hide his tears with the other.  “I cry all the time,” I told him, “there’s no reason to be embarrassed.”  I tried hard to hide the tears starting to run down from my eyes when I spoke to him.   He started to laugh but before we could enjoy the moment, the extreme pain must have kicked in again and the people driving the van, gently, but with deliberate purpose, got between us and started to take over the situation by performing their various tasks.  It was frightening to watch and even scarier to listen to them talk on their walkie-talkies about needing to bring my Dad to the hospital “STAT.”  Then as they shut and secured the doors keeping my Dad in the van, they said something into the walkie-talkies to the effect of: “Possible perforation on the way.”

The systemic effects of Crohn’s Disease explains a lot

When those very nice people from the van with the sirens on top carried my Dad away to the hospital on some stretcher as if he were a king, I knew this hospitalization was going to be different than all others before it.  With nothing to do during the next day but hang out with Lucky, I decided to get up early and create a play station area near my Mom in the kitchen so I could hear all of her phone conversations.  Friends, family, and even neighbors, who had seen all the commotion with the van and its flashing lights, were calling to inquire about my Dad’s health.  That’s when I overheard Mom telling a friend how concerned she was ever since the doctors started telling her that Dad might have this stomach illness called, “Crohn’s Disease” and that sometime soon, he might need surgery.

Apparently a few weeks prior to this emergency hospitalization, my Mom and Dad had finally found a doctor who put the jigsaw puzzle together and tentatively diagnosed him with Crohn’s Disease.  They were careful never to discuss it in front of me because I think they were finally catching on that I understood everything they said and hearing THAT would have terrified me.  But now that the genie was out of the bottle, Mom didn’t mind discussing it in front of me so she used the phone to ease her nerves by sharing all she knew with those she loved.  Most of the phone conversations were dominated by her trying to explain to friends and family that the gastrointestinal illness “Crohn’s Disease” is actually a chronic, incurable, autoimmune disease which had systemic effects due to my Dad’s abnormal immune system. While this explained many of the seemingly unrelated and unpredictable symptoms Dad had been enduring, and it converted many of the skeptics rather quickly, I didn’t understand many of the words Mom used but judging from her unstable voice, I was now more worried than ever about my Dad.

The Stress of a long Crohn’s Disease “Diagnosis Journey”

If there was ever any doubt that my Dad’s problem emanated from his intestines and immune system, and there was, it would be erased during this hospitalization when he was admitted for a suspected perforated intestine.  Even though I didn’t understand many of the words being spoken around me, the more I learned about Crohn’s Disease, the more it sounded like the diagnosis which best explained my Dad’s unpredictable health, why he spent so much time in the bathroom and why he was often too tired to play with me when he came home from work.  It also explained the several other previous hospitalizations I had heard about which occurred when I was still in my Mom’s belly.   I also began to understand how the stress of being so sick coupled with being doubted by very smart doctors had created tension between him and my Mom.  I can’t imagine my Mom ever doubting my Dad but, she’s only human, so, when the top doctors in New York City repeatedly told my Mom and Dad that all he kept complaining about couldn’t possibly be true, that had to complicate their relationship.

The diagnosis of Crohn’s Disease was a “Relief” and “Vindication”

My Mom was also strangely “relieved” that all doubts had now been lifted from the tentative Crohn’s diagnosis as she said something like “at least we finally have the correct diagnosis” because despite several previous hospitalizations and my Dad unequivocally complaining of various symptoms, the doctors were previously unable to correctly diagnose my Dad.  Incidentally, I also overheard that this “diagnosis journey” pre-dated me which meant my Dad had been suffering from these undiagnosed horrific symptoms for at least three (3) years.  My Dad’s lucky he has a partner like my Mom who stood by him when many others must have thought he was a hypochondriac or just plan crazy.

Generally, most doctors they had seen previous to my Dad’s current “Gastroenterologist” thought he either had Irritable Bowel Syndrome, Fibromyalgia, Lupus, Advanced Lyme Disease or Chronic Fatigue Syndrome but, as I heard my Mom tell it, none of them truly believed everything my Dad was telling them.  The other doctors thought there was nothing wrong with him other than a “nervous stomach” which he could control better if he had a less stressful job since meeting his sales quotas every month was an ongoing tense conversation topic almost every night at dinner.

I also heard my Mom tell one of her friends how frustrated she got when some doctor with “the personality of a handball” (those were my Mom’s words, not mine) told them there’s nothing wrong with my Dad and he is causing all of his own problems due to the combination of his diet and the manner in which he is handling the stress from his job.  This “handball” doctor didn’t believe my Dad’s symptoms were real as he thought they were too varied to be connected to one particular diagnosis.  Another doctor, she said, who cost a “small fortune” to consult with, thought my Dad’s medical problems would be resolved by Psychological Counseling.  Basically, that doctor was telling my Mom that my Dad was crazy.  After hearing these heart-breaking “diagnosis journey” stories, I started to understand why my Mom was relieved that Dad was finally being treated by a doctor who believed him as he viewed Dad’s multi-faceted symptoms as a “textbook case of Crohn’s Disease.”

Putting Crohn’s Disease patients on the Defensive

I remember the doctor who delivered me and other than the gentle slap on my chest she gave me to get my lungs started, I was so impressed by the manner in which she comforted my Mom during what I’ve been told was a difficult delivery.  I felt like some “special empathetic person” had helped my Mom bring me into this world and as a result I would be such a special compassionate person.  After that experience and watching my Dad suffer for a few years, I thought doctors were supposed to try and give patients answers to their medical problems but according to my Mom, some of my Dad’s doctors were putting him on the defensive as if he had caused the problem.  At some point, thought, I remember my folks agreeing to be “resilient” about the situation by agreeing to trust Dad’s body.  I never knew what that meant until I heard my Mom refer to their “diagnosis journey.”

The Slow & often Sad Diagnostic Process of Crohn’s Disease

As for Dad’s symptoms, I had either witnessed them or heard my Mom and Dad talk about them.  With all the current technological diagnostic equipment, it’s a shame no one was able to group together Dad’s symptoms sooner so they could be viewed as parts of a larger and collectively more serious medical problem, like Crohn’s Disease. But apparently there is no definitive test to determine Crohn’s as it is part diagnostic, part physician experience, with the remainder left to be determined by the art or science of medicine which enables doctors to make intuitive, educated guesses, when necessary.  Then, after observing the patient continue to suffer these brutal collection of symptoms, the diagnosis is confirmed.

Patient input is critical to the diagnosis of Crohn’s Disease

You’d figure such diagnostic suffering would not be necessary in this day and age but with Crohn’s Disease the patient’s input is critical to the diagnosis.  Yet, my Mom and Dad had been so specific about his symptoms and suffering, and in retrospect 100% accurate, according to globally-accepted information inside pamphlets describing the symptoms of Crohn’s Disease published by the Crohn’s & Colitis Foundation (CCFA) which are given to newly diagnosed patients, yet most doctors either didn’t believe him or they were wrong about his diagnosis. Now I understand why some doctors thought my Dad needed to see a Shrink because going through that diagnostic process would make anyone go insane.

The Main Symptoms/Effects of Crohn’s Disease

Based on observing my Dad over the past 2 years or so, as my memory about year one (1) of my life is still a bit foggy, my Mom’s recounting of it all on the phone to friends and family and the contents of that CCFA pamphlet, which my Dad read out loud to me when we visited him in the hospital to ease his fears I thought his suffering over the past few years made him out to be some type of Martian or wack-job, the general symptoms of Crohn’s Disease include: persistent and/or uncontrollable diarrhea; rectal bleeding; unpredictable/urgent need to move bowels; severe abdominal cramps and associated severe pain; and constipation which sometimes got so bad that my Dad’s belly became grossly “distended” and he looked like Santa Claus.  I always thought that was so funny until I realized how painful it was for Dad.

Another symptom, which seemed to be why Dad was taken to the hospital, is inflammation of the intestines so severe that it causes the gastrointestinal (GI) passageway for food, air and water to become so narrow, Dad would painfully feel anything trying to pass through it.  If there was a blockage of some sort brought about by the inflammation, that narrow passageway became like a kink in a garden hose and nothing got through.  Always compounding this problem is the human body’s process of “peristalsis” which helps keep things moving down the GI tract.  But when peristalsis comes upon a blockage, the pain of constantly trying to pass through that blockage or “obstruction” could be unbearable.  In some rare instances, the pressure would build up from repeated attempts at trying to get through the obstruction that it would cause the Crohn’s patient to “perforate” his intestines.  This means a hole is formed in the intestine and then the contents of the intestine start to leak into other parts of the body potentially causing life-threatening infections.  This is why my Dad’s current situation was considered an emergency as the people who transported him to the hospital thought he may have perforated his small bowel.

Some Inflammatory and Systemic effects of Crohn’s Disease

In addition to the GI symptoms, Dad experienced such severe rheumatic-type joint pain that he’d see an orthopedist but he or she never could help him because all along his problem was caused by his Crohn’s Disease which came with the symptom of the sudden onset of often temporarily disabling joint pain. This aspect of Crohn’s Disease was also unpredictable in that one day me and my Dad would clean out the garage together but the next day he’d have to back out of a promise he made to Mom that he’d set up the outdoor furniture on the patio deck because he was in too much pain to do so.  I know how much he hated breaking promises to Mom but his Crohn’s Disease made it impossible to even create reliable “To-Do Lists” for fear Dad would have to rest on a day he planned and promised to do anything physical or to be anywhere but at home close to his bed and bathroom.

With Crohn’s being an autoimmune disease, my Dad’s body is unable to normally “fight” inflammation and all the typically prescribed Over-The-Counter anti-inflammatory medications always made his stomach very sick.  In such instances, my Dad was forced to only treat the pain caused by the inflammation or he looked to alternative medicine methods such as Acupuncture for answers.  While this inflammation problem seemed localized to his knees and hands, Dad also complained of a debilitating condition in his lower back which was subsequently diagnosed as “Sacroiliitis,” which is a very painful inflammation located at the sacroiliac joints and is common amongst Crohn’s patients. The sacroiliac (SI) joints are in the lower portion of the spine, below the lumbar spine, and there is no effective treatment for this condition which my Dad can tolerate other than injections of steroids aimed at reducing the inflammation of the SI joints and taking pain medications to ease the pain.  When this happened, Dad walked around the house as stiff as a board and the amount of time it took to quiet down the inflammation was as arbitrary as the amount of time it took to appear as a problem.

Most recently, though, my Dad found Acupuncture very successful in at least shortening the duration of each Sacroiliitis episode.  Dad also often had problems with his eyes as the systemic inflammatory effects of Crohn’s Disease caused otherwise inexplicable painful swelling in and around his cornea.  These same systemic effects also caused my Dad to have Cataract surgery in BOTH eyes at a very young age.  Usually Dad had concurrent GI symptoms when his Sacroiliitis acted up or his eyes bothered him but many times these Crohn’s-caused problems would be standalone issues.  I imagine describing all of this to a new doctor made it difficult to diagnose Dad with Crohn’s Disease and this “difficult to diagnose” problem became almost like another symptom of the disease.  Suffice it to say, after that day I overheard my Mom explaining the multi-faceted effects of Crohn’s Disease, I never forgot how severe or pervasive it could be and I also learned how to spell a word not many other adults could spell!!!

Crohn’s is an “Autoimmune Disease” – What does that mean?

Now that everyone heard about the ambulance, my grandparents called to see how my Dad was doing but Mom put up a brave face not wanting to overly concern them with the harsh realities of Crohn’s Disease.  She said all the right things, so as far as they knew, my Mom and Dad were still on their diagnosis journey.  My Mom figured she’d tell Dad’s folks after he was formally diagnosed and feeling better.  But she told her friends EVERYTHING and I couldn’t help but crawl over and listen more intently as the list of medical maladies associated with Crohn’s Disease seemed to never end.  But it was difficult to hear through Lucky’s seemingly non-stop whining about being bored eating the same food night-after-night (that’s right, kids my age can converse with their own dogs).  In that regard, I heard my Mom say things like Crohn’s is really an incurable “autoimmune” disease whereby my Dad’s immune system over-reacts to being stimulated such that it starts to attack itself. When I heard that I got scared because there’s nothing my Dad can do about that.  I wondered if I could somehow help him with that.

Some of my Mom’s more superficial friends, who usually did all the talking and were unaccustomed to listening, blamed it on all the job stress my Dad deals with as a salesman who must meet his sales quota every month.  That got my Mom upset because the doctors told her that stress has nothing to do with Crohn’s flare-ups or with their severity.  But my Mom knew her friends meant well; they just didn’t know what else to say when they listened to my Mom tell them, for example, how the most effective of the Crohn’s medications often cause side effects so severe they rival Crohn’s in terms of their pervasive and severe effects.  Some also can cause the scariest of short and long-term medical problems such as pancreatitis, different life-threatening cancers, liver problems, potentially lethal lung and respiratory problems, other auto-immune diseases, etc.

Crohn’s Disease & Steroids – Great Medicine with BAD side effects

One of these Crohn’s treatment drugs is a steroid, which in the pill form is known as the steroid “Prednisone” but in the hospital, when given intravenously for a more immediate effect, it goes by different names.  It is used routinely by the doctors to reduce intestinal inflammation as a way to stave off surgery.  However, its ability to quickly reduce inflammation comes at the long-term cost of likely weakening my Dad’s bones as he aged.  As a result, the doctors use steroids for brief periods of time to attack the worst part of a Crohn’s flare-up in much the same way, and in similar quantities, a normal person’s body would naturally produce it to counteract any deleterious inflammation.   Steroids are also used, in one form or another, to combat all the other systemic inflammatory problems my Dad has such as steroid injections for his Sacroiliitis and steroid eye drops for his aforementioned eye problems.

Crohn’s is an Inflammatory Bowel Disease (IBD)

I thought steroids were drugs athletes took to enhance their athletic performance but with Crohn’s Disease they are very important tools used by doctors to “manage” the disease since it cannot be cured.  After all, Crohn’s Disease is classified as an Inflammatory Bowel Disease (IBD).  Unfortunately, the amount of steroids used in severe Crohn’s cases like my Dad’s can result in the need for eventual Hip Replacement or Spine-Fusion Surgeries at relatively young ages such as in the early 40s but that is commonplace for patients with Severe Crohn’s Disease.

Surgery is a treatment of last resort for Crohn’s Disease patients

I also heard the frustration in my Mom’s voice as she tried to explain why surgery is a last resort for Crohn’s Disease patients because we all have approximately twenty-two (22) feet of small bowel and the surgeons can’t keep taking out the diseased portions of the intestines for fear that a patient like my Dad will then have to get an Ostomy of some sort if he runs out of small bowel.  I didn’t understand this so I asked Lucky because he has an encyclopedia-like brain and tends to know about medical stuff since for the first few years of his life he lived inside a big Veterinary Clinic until my Dad “rescued” him.  This is what Lucky basically told me: An ostomy refers to the surgically created opening in the body for the discharge of body wastes and there are many different types depending upon which part of the gastrointestinal tract must be removed such as the small bowel, colon or large intestine.  So an ostomy sounded like a viable medical treatment but it radically changes the person’ lifestyle.  I hoped my Dad didn’t need one but I know he could deal with it, if he had to.

Being hospitalized for “Crohn’s Disease”

Sensing my eagerness to see Dad, my Mom finally took me to see him in the hospital.  She tried to act all cheery when we got there, and so many pretty nurses pinched my cheeks that for a few seconds I forgot why we were there, but I knew Mom brought me to try and deflect the feeling of hopelessness she and my Dad had regarding his current prognosis and his unpredictable future with Crohn’s Disease. When we got to my Dad’s hospital room he looked different as he had an “NG Tube” inserted through his nose down into his stomach.  He was in too much pain to speak, or when he tried, he slurred his words and sounded a little like Lucky.  I tried not to laugh.   His doctor was there to greet us and after exchanging pleasantries he explained my Dad’s situation.  I understand most things adults say but that seemed boring so I tried to take a nap until he gave us the example of a “kink in a garden hose.”

In short, he told us that just like the water trying to pass through the blockage in the garden hose caused by the kink, my Dad’s intestine was having trouble trying to digest the popcorn, which is a major no-no for Crohn’s patients.  Each time his body naturally tried to move the popcorn down his intestines, his intestinal obstruction would not let that happen and the result was severe pain for my Dad.  In the past hospitalizations, there was always something getting through so even though he had great pain during those hospitalizations, he only had “Partial Obstructions;” this time he had a Full Obstruction because nothing was getting through. They even feared he had perforated his intestine which would have meant emergency surgery, but he had not.

So the plan was to first siphon out whatever was in his stomach to alleviate the pressure which kept causing Dad pain when it came up against the obstruction.  This included “air,” which, when caught inside the body, is typically expelled as gas but if it got stuck, it was just as painful as food.  That’s what the NG Tube (Nasogastric Tube) was for and I can’t even imagine how they inserted it through my Dad’s nose down into his stomach while he was awake!!  I guess when you are in so much pain it doesn’t much matter what they do so long as it relives the pain, which my Dad said the NG tube did almost immediately.  The doctors then started giving my Dad intravenous steroids around the clock hoping such an intense course of drug therapy would reduce the abnormal inflammation in his intestines and then help my Dad “open up” by calming down the “angry” inflammation which was making even the digestion of water painful.

At the very least, this emergency episode with the popcorn placed my Dad inside a hospital during the absolute worst part of a flare-up and because of that the doctor was able to perform various diagnostic studies to confirm a diagnosis of Crohn’s Disease.  This was the good news for the day.

The 1st Surgery for Crohn’s Disease

But after ten (10) days or so, nothing changed and through those various diagnostic tests they were able to identify a specific area of his small bowel which was causing the obstruction.  This same area had been the culprit in previous hospitalizations so Dad wound up having surgery to remove this part of his small bowel.  Everything went fine during the surgery but the post-operative process was difficult as my Dad woke up from the surgery with an NG Tube in his nose and a Foley Catheter attached to his penis so he’d be able to rest in bed instead of getting up to go to the bathroom.  At the same time, they wanted him to get up and walk with all these contraptions attached to him.  Then he also had to deal with the surgical pain of having his abdomen cut open.  It was very difficult.

After the 3nd day post-op, the doctors encouraged him to start sucking on ice-chips to see how his body tolerated it.  Then they had him try clear liquids and then full liquids.  Once his body tolerated those, the doctors waited for his intestines to “wake up.”  The way they measured this was by him “passing wind.” Once that happened, they finally started feeding him very soft foods.  This went on for a few days until they were able to slowly advance his diet.  If there were no negative consequences to him eating, he was eligible to be discharged after he had a bowel movement.  Thankfully, that happened approximately six (6) days after the surgery. It was funny, for what seemed like so long my Dad couldn’t stop going to the bathroom and he had surgery to fix that problem, but now I was rooting for him to go to the bathroom again so he could come home.

Managing Crohn’s Disease Post-Operatively

It had been a few weeks since my Dad was back at home from the hospital after his surgery.  He had some pain from the surgery and Mom told me and Lucky to be careful how we played with him but other than that, it was great to have him home and healthy.  He was no longer running to the bathroom 20-40 times a day and it appeared the surgery fixed all his problems.  But just as I was getting comfortable with my “new and improved” Dad, he started getting tired without notice and certain foods started causing the same old GI symptoms.  While my Dad had a few follow-up visits with the surgeon, he had not seen or spoken to his Gastroenterologist since he last saw him in the hospital. So he called him to tell him about some “issues” he had and shortly thereafter my Mom scheduled an appointment with him.

I had never before seen my parents sit together in a doctor’s office discussing Dad’s Crohn’s as most of what we now knew were his Crohn’s Disease episodes were emergencies and/or they involved a hospital at one point or another. So I didn’t understand how the doctor could help my Dad from behind a desk.  They took me along because the babysitter fell through at the last minute so Mom warned me to be on my best behavior so I just listened while sitting on my Dad’s lap, holding has hand.  Over the next twenty (20) minutes the doctor laid out my Dad’s options because he felt his Crohn’s was too aggressive and severe not to be treated with some type of “preventative” medication.  While the surgery was a success, he said, it was quite possible Dad’s Crohn’s Disease could come back at any time and affect a different part of his intestine.  Moreover, he added, my Dad would always have an autoimmune illness so he’d still have to manage his health very carefully.  My Dad asked many questions most of which the doctor had no specific answer to besides, “It depends.”

When my Mom chimed in asking for a more detailed explanation, the doctor, carefully alternating his attention between my Mom and Dad, very kindly and compassionately said, “Crohn’s Disease is a complex incurable autoimmune disease which has a broad spectrum of severity and it affects people differently. Over time, we will know the answers to many of your respective questions through trial and error.”

Then, to provide my parents with some perspective, he said that many Crohn’s patients get a Crohn’s complication called a “fistula” which is an abnormal connection between different body parts. He said fistulas can develop between your intestine and skin, or between your intestine and another organ causing continuous drainage of bowel contents to your skin or another organ.  In some cases, a fistula may become infected and form an abscess, which can be life-threatening if not treated. Then he said, “Be thankful you don’t have a fistula because life can be miserable with one. You have an aggressive form of obstructional Crohn’s Disease so let’s just treat that and take each day as it comes.  You may not need to see me for 6 months or you many need to see me sooner.  Only time will tell.”

Managing Crohn’s Disease with Medicine

My Mom’s jaw was still dropped in shock after hearing about the possibility of developing a fistula but my Dad grabbed her hand and comforted her.  The doctor had made his point so the rest of the conversation focused on devising a medication strategy which would treat the underlying Crohn’s instead of the dangerous manifestations of it such as an obstruction or an anal fistula.  So they first started talking about my Dad taking one of various available immuno-suppressive drugs which are basically used to slow down the immune system from being over-active and attacking itself.   First discussed was immune-suppressant drugs like 6-MP and Imuran but the doctor said it took those drugs 3-6 months to build up in one’s system to have an effect and he therefore was concerned Dad might obstruct during that rather long waiting period given his aggressive disease.  For that reason, they collectively ruled out that combination of drugs for Dad.

These drugs, like all the immune-suppressant drugs being discussed, also came with a laundry list of possible lethal side effects because slowing down one’s immune system left that person with a severely compromised immune system but that is the way Crohn’s has been effectively managed over the years.  It seemed counter-intuitive to weaken an already abnormal immune system but my Mom and Dad had performed a ton of research before this meeting so they were prepared for the discussion.  I also remember them discussing another similar drug, Methotrexate, and it worked faster but the potential side effects for my Dad were even worse given some family medical history.

Then the doctor said they had developed new “Biologics” which were drugs often successful at putting Crohn’s Disease into Remission.   He seemed to be pointing my Mom and Dad in that direction beginning with the drug Remicade.  It involved having to get it infused every 6 weeks or so but many Crohn’s patients had been doing very well on it.  If that didn’t work, there were other Biologics.  These drugs also came with a long list of side effects but full Remission seemed like paradise and after hearing about the fistulas, my Mom and Dad quickly agreed to start Remicade treatments as soon as possible.

I’ll never forget what the doctor said as he shook their hands to say goodbye.  He looked them each in the eye and said:

“Let’s not kid ourselves, Crohn’s Disease is a very serious disease.  You’d never know it from the advertisements you see on television but it can be vicious with devastating physical, psychological, emotional, professional, financial, social and familial effects.  But great progress is being made in research and we are CLOSE.  So, ‘the longer you live, the longer you live.’ By this I mean, do what you must to get to tomorrow and if you do, there is a chance there will be newer, better drugs which may even cure Crohn’s Disease.  Good luck.”

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Stanford Medicine X, Quantified Self & Connected Health at Doctors 2.0

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Here’s a few more Video Interviews I was able to conduct at the recent “Doctors 2.0 & You” in Paris, France.  They run the gamut from chatting with the Executive Director of the “sister conference” of Doctors 2.0, namely Stanford Medicine X (Dr. Larry Chu) to gaining a hands-on understanding of Connected Health and Quantified Self (Christian Funk), the two (2) “hottest” fields in “disruptive healthcare.”  In that context, “disruptive” is a POSITIVE TERM in that it represents efforts aimed at changing and improving the healthcare “patient experience,” which obviously has much to improve upon.  I’ve also included interviews with two  (2) extraordinary people who are singlehandedly making major impacts on methods of effective Patient Advocacy (Seth D. Ginsberg) and Lifestyle/Preventative Medicine  (Dr. Liana Lianov).

I’ve also included a fascinating Interview with Crohn’s Disease patient and frequent Keynote Speaker, Michael Seres.  Michael stands out because in 2011 he was only the eleventh (11th) person IN THE WORLD to undergo a small bowel transplant and the 6th to succeed.  His contemporaneous blogging of the transplant experience (his blog is “Being a Patient Isn’t Easy!,”) was so accurate and inspirational that it is now considered a Patient Manual and Required Reading by the global Intestinal Transplant Association.   Finally, this Blog entry would not be complete without an interview with Thomas Lee of Symplur about “The Healthcare Hashtag Project” which is so instrumental in helping shape the health care social media discussion. Somehow, Thomas and Symplur make Twitter healthcare “analytics” fun and more importantly, these analytics help hardworking, dedicated healthcare entrepreneurs, disease experts and advocates most efficiently target their message to its intended audience.

 

This is an Interview with Dr. Larry Chu about digital health and this year’s Stanford “Medicine X,” taking place September 5, 2014 through September 7, 2014.  Dr. Chu is the Executive Director of Stanford “Medicine X,” a leading healthcare conference which explores how emerging technologies advance the practice of medicine, improve health and empower patients to be active participants in their own care. It is the formal “sister” conference to Doctors 2.0 & You.  Dr. Chu is a practicing physician who runs the Anesthesia Informatics and Media (AIM) lab at Stanford University. He is an Associate Professor of Anesthesia on the faculty of the Stanford University School of Medicine.

This is Interview is with Christian Funk, project manager for the Germany-based company, Medisana, about Connected Health & Quantified Self.  Christian Funk has been a prolific creator in the area of mobile health but four (4) years ago he started helping to develop and market Medisana’s award-winning “VitaDock” series of Connected Health and Quantified Self devices and applications.  As a result, he is considered an Expert in these fast emerging Global Healthcare fields.

This Interview is with Seth D. Ginsberg, President, Global Healthy Living Foundation, Inc., about Online Patient Communities and Organized Patient Advocacy. Seth Ginsberg is often referred to as “America’s Patient Advocate” and a special adviser to tech start-up companies that are engineering solutions for today’s healthcare- and education-related problems. He is not only the president and co-founder of CreakyJoints, the arthritis advocacy organization and world’s most popular arthritis community, he is also a member.

This Interview is with Dr. Liana Lianov and delves into Lifestyle & Preventative Medicine. Dr. Liana Lianov is a Senior Medical Consultant at the California Department of Health Care Services and the Immediate Past President of the American College of Lifestyle Medicine. She is Board Certified in Preventive Medicine and Internal Medicine, completed a Psychiatry fellowship, and is a national leader in the Lifestyle Medicine movement. Lifestyle Medicine promotes healthy living not only to prevent, but also to treat, chronic diseases. You can learn more about Dr. Lianov’s efforts at Healthtype.com.

This Interview with ePatient Michael Seres is about Life as an engaged ePatient with a Small Bowel Transplant. Our recorded conversation at 2014 “Doctors 2.0 & You” included his account of his unique patient blog journey, his thoughts on what constitutes a successful blog, how he continues to advocate despite formidable day-to-day medical struggles inherent in any transplant or chronic disease situation [i.e., Crohn's Disease] and he also offered his fascinating insights regarding the subtle differences between this Medical Conference and its “sister” Conference, Stanford Medicine X, held each year at Stanford University in Palo Alto, California.

This Interview about Healthcare Social Media Analytics & the Utilization of Twitter Healthcare Data is with Thomas Lee, Co-founder of both Symplur, L.L.C. and “The Healthcare Hashtag Project.”

By way of brief background, Mr. Lee is also Managing Partner of The Fox Group, LLC, an internationally-based healthcare consulting firm.  Mr. Lee’s nearly four decades of experience in the business of healthcare includes special emphasis on business start-ups, new program development and leveraging web. His current passion is the role social media plays in the evolving healthcare landscape, and in the emerging field of healthcare social media analytics.  Thomas also teaches university level courses and has been a frequent guest lecturer to doctoral level students on the subject of healthcare start-up businesses and entrepreneurship.

Crohn’s Disease & IBD – Interview w/ an Expert

USE Chapman Blog Pic July 9 2014

Chronic patients must adapt to different doctors

As a 30-year Crohn’s Disease patient, I’ve met every conceivable type of physician and encountered them on probably their (and my) best and worst days.  With such a complex and seemingly “personalized” disease, I’ve learned there’s rarely a doctor-patient “comfort zone” such that they “take you at your word” when you articulate your symptoms, as rare or strange as they may be, or when you convey your surgical scarred-substantiated veteran thoughts.  But that’s the gig with a chronic, incurable, autoimmune disease like Crohn’s so you must learn to adapt to the different personalities you meet along the way in order to quickly and effectively communicate to obtain the best possible medical care.  When you are diagnosed at the relative young age of 21, the process of adapting also most assuredly includes difficult school, work, family or life relocation decisions which translates into even more “new” doctors with whom to meet and get along with.  This was all true for me but unbeknownst to me at the time, I was lucky; my first Crohn’s doctor turned out to be “THE” Crohn’s Disease doctor.

Sometimes the “first” doctor is the “best” – who knew?

Ironically, it was my first gastroenterologist, Dr. Mark L. Chapman, who instilled in me the necessary courage and confidence to leave his “care jurisdiction” by making those life relocation decisions strictly “on the merits” and not in any way, shape or form influenced by the fear of having to find another Crohn’s Disease doctor with whom I could communicate so intimately; all because we had developed such a uniquely mutual trusting rapport.  By necessity, I tried to re-create this relationship in different parts of the United States, at different times of my life, and its been 30 years, but I’ve never found another Crohn’s or IBD doctor like Dr. Chapman who is so adept at being able to identify and treat so many of the Crohn’s “curve-balls” which initially make me bend at the knees but then wind up painting the corner of the plate as painful, frustrating or disabling strikes which disrupt my life and make me take notice of their potentially pervasive effect on my life or lifestyle.

*“From Tuscon to Tucumcari, Tehachapi to Tonapah” – “Willin'” 

Even though my life’s journey has thus far included prolonged residence in, and visits to, wonderful cities like Boston,  Los Angeles, Portland, Oregon and Paris where I encountered compassionate and expert doctors, and in my travels I’ve had bizarre Crohn’s Disease obstruction complications from the high altitude of South Lake Tahoe, California, the almost perforating pressure inside a small airplane ride from Dothan, Alabama to Atlanta and in Portland I woke up with a Delayed Anaphylactic Reaction to my last infusion of Remicade in New Jersey, I always wound up seeking Dr. Chapman’s advice because no one else could scientifically explain what had happened to me.  I also frequently encountered rare complications from my Crohn’s Disease and unprecedented side effects from the Biologic Drugs and each time they too ultimately led me back to Dr. Chapman because he was the only GI doctor with a global track record of effectively identifying such problems and devising successful treatments.   Mind you, I would extensively research these Crohn’s Disease issues trying to seek a second such opinion but the road always led back to Dr. Chapman. **“Send lawyers, guns and money.  The shit has hit the fan.”  He’s THAT doctor.

Treating severe Crohn’s Disease is a number’s game

My 100% belief in Dr. Chapman is based on logic because obtaining an accurate diagnosis and successful treatment for a challenging and incurable disease like Crohn’s whose “medical textbook” treatments for the most severe of flare-ups often causes even worse side effects is akin to a “number’s game” and the New York City Gastroenterology (GI) Practice in which Dr. Chapman is a Founding Partner has likely treated more Inflammatory Bowel Disease (IBD) patients over the past 30-50 years than any other private GI medical practice in the world.   Moreover, Dr. Chapman’s GI medical practice is the type people turn to from all over the world when the complexities of their case befuddles their local then regional then national IBD experts.

Even when TV asked, I recommended Dr. Mark L. Chapman

I always thought Dr. Chapman resembled the great character actor Brian Dennehy and for some strange reason which has nothing to do with science, that brought me great comfort whenever I was hospitalized and saw him approach my room during morning Rounds.  We would joke about it but then in 2001 when my book, “Confessions of a Professional Hospital Patient,” landed me on NBC’s “Today Show,” MSNBC contacted me about producing a “patient segment” and they wanted to interview my Crohn’s Disease doctor.

Book July 9 2014

They said I could choose any doctor in the United States.  While it does suck to have Crohn’s Disease, it was an incredibly cool feeling the morning Dr. Chapman had to shut down his very busy New York City GI Practice so he could talk about treating ME for Crohn’s Disease to an MSNBC Reporter under the  lights with the pre-Interview makeup ritual which he seemed just a tad too at ease with.

That’s the superficial background on Dr. Mark L. Chapman’s credibility as a Crohn’s Disease and IBD expert. So when a few well-intentioned but rather intense people on a Crohn’s Disease Facebook Group once challenged me on some Postings I made about a Documentary my Charity is producing about Crohn’s and IBD, I thought the best and most efficient way to answer their “comments” was to go directly to the “Source.” That Source is Dr. Mark L. Chapman and he was kind enough to indulge me in my attempt to share his Crohn’s/IBD wisdom in healthcare social media.  To that end, below is Part One (1) and Part Two (2) of my September 10, 2013 Interview with New York City-based Gastroenterologist, Dr. Mark L. Chapman, arguably one of the world’s foremost authorities on Inflammatory Bowel Disease (“IBD) based on his 50+ years of practicing Gastroenterology in one of the world’s busiest and most well-respected GI medical practices.

Note:  This is NOT Medical Advice

Part 1 – In this portion of the Interview, Dr. Chapman provides succinct explanations for the differences between diagnoses of Crohn’s Disease, Colitis, Ulcerative Colitis and even “Crohn’s Colitis.”  Dr. Chapman also explains the serious symptoms associated with having “Severe Crohn’s Disease.”

Part 2 – In this portion of the Interview, Dr. Chapman opines on the role played by the somewhat controversial medical specialty of “Pain Management” insofar as treating Crohn’s Disease and Ulcerative Colitis.  Dr. Chapman also explains what many patients believe is a strange phenomenon regarding their disease flare-ups occurring at the same time of the year; year after year; inferring some type of environmental factors might be involved with triggering Crohn’s Disease flareups.

 

*“Willin'” – lyrics by Lowell George

**“Lawyers, Guns And Money” – lyrics by Warren Zevon

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Google Glass & Surgery, Medicine & Healthcare Innovation

I’ve heard many smart technologically-obsessed healthcare professionals speak at Conference after Conference about how Google Glass will revolutionize the practice of medicine for both patients and doctors but it’s hard to take them seriously when they look like Jacques Cousteau wearing some custom-made contraption just before submerging to explore the depths of some faraway ocean which I will never visit. However, my mind was recently changed at “Doctors 2.0 & You” in Paris, France, when Google Glass Surgeon and “Explorer,” Dr. Rafael Grossmann, was kind enough to share a few minutes with me and explain what every medical expert seems to be sure of, i.e., Google Glass could be a powerful tool for “disruptive innovation in healthcare.”

By the way, the term “Google Glass Explorer” is actually a “term of art” in that these people sign up with Google to purchase Google Glass and then share their stories from using it. I applaud Google for being such a “thick-skinned” corporation focused strictly on making the best product possible and I am eternally grateful to the Medical Google Glass Explorers who are bringing to fruition all that Dr. Grossmann alludes to in this 8-9 minute Interview. Enjoy.

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Crohn’s Disease Patient Reporter back from “Doctors 2.0 & You” in Paris, France

Healthcare “Serious Games” & “Simulation” at Doctors 2.0 & You 2014

Anderson Cooper, look out!

It’s no secret that I try to “cope” with the comprehensive and systemic life-changing effects of 30-years with Crohn’s Disease by advocating for raising global awareness about this auto-immune, chronic, “broad spectrum severity” and often misunderstood disease.  I even started a 501 (c) 3 Charitable Foundation called the “Crohn’s Disease Warrior Patrol” [CDWP] to organize and implement a Patient Care Strategy to help newly diagnosed patients based on the simple adage: Patients helping other Patients is often the Best Medicine.”  In that regard, things are going well with some major announcements soon to come including the CDWP finally commencing a patient-driven Documentary aimed at raising global awareness about the potential severity and pervasive effects of Crohn’s and Inflammatory Bowel Disease [IBD].  But as I do whatever I can, whenever I am physically able to do so, I often interact with ingenious, tireless, dedicated people using innovative and entrepreneurial applications of Digital Healthcare to fight their fight against a disease, a broken healthcare system or to improve the delivery of healthcare and make it accessible to more people.  Accordingly, I can’t help but use this Blog to “report” on these people and experiences so that others not so exposed to such extraordinary circumstances can learn about them and be similarly energized and motivated.  With this mindset, I recently traveled to the 4th edition of “Doctors 2.0 & You” held in Paris, France.  I was also invited to Doctors 2.0 & You to speak about Crohn’s Disease and the CDWP as they relate to the Quality of Patient Data available in Healthcare Social Media.

Healthcare “Serious Games” Designer Evert Hoogendoorn at Doctors 2.0 & You 2014

Doctors 2.0 & You 2014 | Interview with Tal Givoly, CEO, Medivizor

Trials & Tribulations of a traveling Healthcare Reporter with Crohn’s Disease

I’ve been to many of these seemingly “cutting-edge” Healthcare Conferences but sometimes they don’t focus enough on the “Patient Perspective” when they tackle the fast-changing landscape of digital healthcare.  That oversight seems patently counter-intuitive and thus negatively skews the quality of my experience and thus it’s always of concern to me prior to attending.  My biggest concern, however, is always my health, especially with respect to Doctors 2.0, because just the mere travel to Paris, France made me very nervous as it was only a few months after my Hip Replacement Surgery and not too distant from the intense chemotherapy I underwent to treat a still-undiagnosed severe breathing/lung problem likely caused by Biologic medications I took to keep my Crohn’s at bay.  Additionally, during my last cross-country excursion to the wonderful “Medicine X” at Stanford University in California, the air pressure inside the airplane caused my bowel to obstruct mid-flight such that the first few days of “Medx” (and the remaining portion of the flight!) were very painful for me.  Then, immediately after Medx when my Crohn’s had quieted down, I tried to take advantage of being out West and visited some friends in Lake Tahoe, CA.  But within a few hours at such a high altitude (i.e., 6,500 feet above sea level), my “insides” blew up and I looked like “The Michelin Man” and knew I had again obstructed and was forced to drive to lower ground to avoid a certain hospitalization. 

Doctors 2.0 & You 2014 | Interview with Stanley Lee of DXY.com in China

Since I was scheduled to fly back to New Jersey from Reno, Nevada, I drove there to a nice, secluded well-respected chain hotel near the airport but quickly learned the hard way that Reno, Nevada is 4,500 feet ABOVE sea level and as far as my bowels were concerned that meant I was still at the top of Mt. Kilimanjaro.  So, at 5 AM, back into the rental car I went, headed toward lower ground while struggling with intense abdominal pain, all the while praying my bowel wouldn’t perforate.  Somehow I safely made it to Sacramento, CA, which is only 13 feet above sea level (I was SO thankful for technology and my ability to quickly research the closest city to Reno, NV which is at or near seal level), and I soon began to feel some relief.  My trusted, longtime New York Gastroenterologist, Dr. Mark Chapman, then over the phone instructed me to stay there for AT LEAST five (5) more days as my body would require that much time to re-acclimate itself.  As always, he was correct as it took two (2) days for the associated joint pain, extreme fatigue and, at times, severe abdominal pain to subside to the point I was able to get out of bed with energy and three (3) more days for me to feel comfortable with the thought of flying again.   

“Connected Health” w/ Uwe DIEGEL, iHealth CEO @ Doctors 2.0 & You 2014

Being amongst “THE” Global Healthcare Leaders at Doctors 2.0 & You

Going to Doctors 2.0 & You also meant my first international travel with a very expensive video camera which I would be relying upon to capture over twenty-five (25) Interviews with fascinating Doctors 2.0 & You Speakers and Attendees.  I was concerned about damaging the camera during travel and/or somehow erasing whatever footage I was lucky enough to record.  Then there was the international electricity situation which I had to rely upon to charge the camera after Day One of the Conference.  Would it damage the camera?  Would it damage the footage?  Would I damage myself trying to figure it out?!  I researched all of these issues prior to the trip but as many of you can already guess, nothing went according to plan, BUT everything worked out.  My health even cooperated although upon my return to the United States I was EXHAUSTED.  As a result, I came back from Doctors 2.0 & You with even more respect for Anderson Cooper! 

More importantly, the people who organized Doctors 2.0 & You were extremely helpful and they did a tremendous job in designing the different “Sessions” and selecting the different Speakers and Panel Moderators.  I truly felt as if I were amongst “THE” Global Healthcare Leaders as I learned about healthcare terms and topics which had never been so thoroughly discussed before at prior Conferences.  These new technology-driven terms and topics included Connected Health, Quantified Self, Preventative Healthcare, a Utopian Data Feed, Personalized Medical Research, Serious Games, Simulation, Lifestyle Medicine and Medical Gamification. I tried to take advantage of the situation by interviewing as many of these Healthcare Innovators as was humanly (and electricity-wise) possible.  Thankfully, everyone I approached kindly consented to an interview and embedded in this Blog Post are five (5) such concise interviews which I think demonstrate everything that was absolutely wonderful about the 4th edition of Doctors 2.0 & You held in Paris, France on June 5-6, 2014. 

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The EVENT that is “Doctors 2.0 & You” in Paris, France

1-Doc 20 and you May 24 2014

 

To encourage attendance at a Healthcare Conference or Event, especially one which requires substantial travel and represents itself as “THE international event in Healthcare Social Media, Mobile Apps & Web 2.O,” the Organizer must ensure it: informs and inspires attendees; provides meaningful and reasonably intimate discussion forums pertaining to new and/or more effective, efficient healthcare delivery and access methods and modalities; and organically generates a comfortable networking environment and a cerebral spectacle which at the same time both validates one’s attendance and also challenges it.

Orchestrating this nuanced recipe requires successful experience in putting together similar healthcare conferences such that long-established and globally diverse contacts and leaders in fields such as medicine, patient advocacy, technology, pharmacology, business, healthcare social media and hospital administration are eager to participate and up-and-coming healthcare entrepreneurs can’t wait to attend and demonstrate their latest innovations.  Perhaps most importantly, all of the foregoing must make both a pragmatic and creative impression on everyone so they leave “Doctors 2.0 & You” THINKING PROACTIVELY about implementing in their own organizations and lives (and in the lives of people they care about) all they’ve seen and heard during their 2-day stint in Paris, France regarding their opportunities with these new ideas, methods and technology.

Why I’m Psyched for Doctors 2.0 & You 

In preparation for writing this Blog post and with the aforementioned high success threshold for Healthcare Conferences in mind, I reviewed the forward-looking Agenda for the two (2) days [i.e., June 5th and 6th] of “Doctors 2.0 & You” taking place in Paris, France AND I perused through the voluminous Bios supplied by the globally diverse and extraordinary lineup of Speakers and Moderators.  Suffice it to say, I am excited to be a part of “THE international event in Healthcare Social Media, Mobile Apps & Web 2.O” organized by Basil Strategies, a digital health consultancy.  Denise Silber is the President of Basil Strategies and 2014 is the 4th iteration of “Doctors 2.0 & You” during which the focus is on the evaluation of digital health.  (Note:  This Blog Entry is of my own volition and in no way was it recommended or required by Basil Strategies.  I simply want people to know about “Doctors 2.0 & You” and why my attendance and responsibilities there will likely prevent me from updating my Blog for a while.)  

What I will be doing at “Doctors 2.0 & You”

My participation in “Doctors 2.0 & You” is two-fold:  1. I am one (1) of the Presenters at the June 5th Session, “ePatients and the Quality of Data,” supplied by, for example, Crohn’s Disease patients in which I show how to maximize the quality, and thus value, of such patient-generated data simply by diversifying both the healthcare social media platforms I rely upon as sources and the methods I use in obtaining that data; and 2.  I will be conducting succinct Video Interviews with as many of the fascinating folks in attendance as possible during the two (2) days so that I can help document the “Event” and then share my experiences and what I’ve learned with everyone who was not able to attend this year’s “Doctors 2.0 & You.”     

The Theme of this year’s “Doctors 2.0 & You”

Day One (1) of the 4th edition of “Doctors 2.0 & You” focuses on the evaluation of digital health. Day Two (2) gets more specific and seeks to address “what we’ve learned and which new areas are most promising.”  In that regard, set forth below are the scheduled Session Topics for each day.

Day 1: – Three (3) Session options for each 60-90 Minute “Session”

SESSION ONE

 Start-up Pitches – This start-up contest brings together seven (7) companies from five (5) Countries, working on diverse aspects of digital health, quantified self, mobile apps, etc.

Evaluating “Connected Health” – “Quantified Self” devices and Apps

“Connected Health” is a healthcare delivery model that uses technology to provide healthcare remotely.  Its objective is to maximize healthcare resources and provide efficient and effective opportunities for consumer patients to engage with clinicians while at the same time better self-manage their care.

 “Quantified Self” is essentially telling stories with data.  It occurs when patients self-track everyday life activities in order to improve their quality of life.

With the advent of technology, the proliferation of smartphones and the increased usage of Wearable Measurable Devices, these are emerging healthcare fields which warrant attention now.  Therefore, various aspects of both will be discussed by users and manufacturers and the Session will also explore what works and what doesn’t – as seen by one of the largest  Connected Health objects manufacturer in the world.

ePatients & Quality of Data – How reliable is patient-generated data in social media?  IS it more reliable coming from individuals or from online disease-specific communities?  Is there a method to maximizing the quality, and thus value, of this patient-generated data? What about patient reviews of hospitals and healthcare professionals?

SESSION TWO

Informal “Unconference” Google Glass Interaction – Diverse Google Glass healthcare pioneers briefly share their experiences and then participants get to try out using Google Glass in an informal setting.

“Disrupting” the practice of medicine through Digital?  The term “disruption” within the healthcare continuum can take on different means depending upon who’s speaking and what they are doing digitally to help manage their healthcare.  The Speakers specifically address Lifestyle Medicine, Telemedicine and the resulting NEW more collaborative Patient-Physician relationship is explored.

Impact of Social Media by Patients for Patients – Several experts explain how they established disease-specific social media communities from scratch and how social media is being used to help with rare diseases.

SESSION THREE

“Gamification” and “Serious Games” – Insights into the Dutch experience and the applications of each and both in Healthcare, for both professionals and patients, young and oldThe Dutch speakers explore important insights into the many facets of the Serious Game and Gamification such as techniques in hospitals and those used in continuing education for physicians.

Advanced eMarketing Pharma Workshop – “The workshop will examine recent digital advances in the patient journey; the pros and cons of where we are now; together with what needs to happen next such that the future ambitions of all those involved [patients, providers, practitioners, Pharma, payors and caregivers] can be realized.”

Social Media Curation (or selection of health web resources) with one of the most influential online physicians and “medical futurists,” Dr. Berci Mesko.  Dr. Mesko teaches health web curation to a variety of audiences (e.g. medical students) and he will adapt his teachings to the enrolled attendees.

SESSION FOUR

New Data on Physician and Patient Engagement – Analysis of never-before presented proprietary data on web conversations and behavior in both healthcare professionals and patients around the world.

Evaluating Digital Pharma Case StudiesDiscussion of three (3) different facets of Pharma’s digital involvement: European perspective on remote detailing [i.e., electronic visits with Pharma sales reps]; continuing education; and use of major social media networks.

Educating physicians in online communities – Exploration of techniques which enable physicians to learn best in online communities such as: in a Pharma-supported training program in an Australian online physician community; in a Pharma-supported Russian “gamifying” online physician community; and in an online physician network in Switzerland which focuses on improving skin cancer detection with an electronic dermoscopy device.

SESSION FIVE

Spanish Meet-up “Unconference” Session – Spanish speakers and conference participants are invited to meet at the end of Day 1 to share perspectives on the different sessions they’ve attended.

Twitter Demo: New Launch Tool – The company behind “The Healthcare Hashtag Project,” Symplur, will demo a new and exciting social tool.

Personal Blogging: What works, what doesn’t?   Uniquely successful, candid and prolific UK blogger, Michael Seres, whose personal blog leading up to his recent rare small bowel transplant due to Severe Crohn’s Disease is now the OFFICIAL patent blog of the Intestinal Transplant Association for patients to read before such transplants to help prepare them for the plethora of personal, physical, emotional, psychological, familial, social and professional issues, shares his perspective on which platform, which subjects, how to market a blog, integration with mainstream media, etc.

Day 2

Caregiver Perspective – Meet the parents who developed SUBSTANTIAL social media awareness about the devastating effects of pediatric stroke after their son was so stricken. “Hear the power of their message.”

Understanding the seemingly never-ending NEW digital healthcare tools - The bounds of patient and physician imaginations are being stretched with new modalities driven by the surge in both the entrepreneurial spirit and technological capabilities.

Integration of Google Glass for Surgery? Pharma? Payers? – Experienced Google Glass Explorers share their learned perspectives and Pharma and Payer perspectives are also addressed.

From Data to BIG DATA: Good for Whom?  There’s more data and more mediums than ever before so how do we make use of it to improve healthcare?  “Are we making use of it to improve healthcare?”  Relevant analysis of the #Doctors20 Twitter hashtag is provided by Symplur using latest visualization techniques.

Can Social Media Stop Colon Cancer?  Spreading the word through social media campaigns about preventative steps to stop colon cancer has concrete results and numbers.

Physician engagement, Community and Pharma – Online physician engagement is taking different forms and including diverse online communities and tools, such as China’s Weibo, a hybrid of Twitter and Facebook which is the most popular site in China, including  partnerships with Pharma. Pharma’s relation to all of these global communities and tools are examined.

Quantifying “Quantified Self”! – An examination of both the rise of mobile apps and connected objects, such as different wearables, and a prognosis of the future regarding them.  The groundbreaking speakers will: compare and contrast the United States and European perspectives; examine the interest of Wellness programs for Pharma; and contrast the Spanish and international perspectives.

Digital Pharma, Hospitals, Patients and Patient Drug Research – The effect of, and opportunities provided by, the new digital age and fast-changing healthcare technologies is examined from the perspectives and experiences of the different healthcare stakeholders. Pharma expert provides his perspective from within the industry about this digital convergence.

Mobile Health Best Practices – With the proliferation of mobile health, there are many questions about its “Best Practices.”  An extraordinary panel of experts provides their thoughts, ideas and answers.

MOOC [Massive Open Online Course] on Mobile Health: does it work?  Currently, more people have access to a mobile phone than they do to clean drinking water. Simultaneously,  health systems around the world struggle to deliver cost-effective care.  But with the advent of FREE MOOCs open to anyone with an Internet connection, there lies great promise.  The developer of the successful MOOC, “Mobile Health without Borders,” in which 10,000 students from all over the world participated, reports on his experience.

Serious Games: What results? – The founder of Games for Health Europe shares specific examples and his visionary perspective on the emerging sector of “Serious Games” and simulation for health.

A Look into the Future with @Berci – One of Europe’s most connected physicians and the world’s most notable “medical futurist” provides a fascinating look at the future of digital health.

Adieu

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