Tag Archives: Doctors

Dr. Greenbaum, Rheumatologist – WORST DOC of the YEAR!!!!

Posted on December 4, 2012 | 13 Comments

December 4, 2012 – I came upon this Blog Post late last night when a respected Patient Advocate Colleague of mine, Casey Quinlan, had re-tweeted it with the added commentary that, “it’s only Monday but here’s my pick for Douche of the week.” First off, I apologize to those who are offended by the “salty” language but please hold off on any judgment until you read what this Rheumatologist, Dr. Larry Greenbaum, wrote in his Blog. Secondly, I have come to know Casey Quinlan as a strong, respectful and articulate woman who is ALWAYS on the right side of a debate so when she uses such language to emphasize a point, there must be a good reason.

Judge for yourself, as pasted directly above is the Blog Post made by Dr. Greenbaum, dated November 30, 2012, entitled, “Kiss my …” After reading it and my email response to Dr. Greenbaum below, you will understand why this Blog post SO repulses chronic patients like Casey and me and why it prompted me to write to Dr. Greenbaum below. In that regard, PLEASE feel free to comment on THIS Blog Post and/or to send Dr. Greenbaum an email of your own as he posts his email address on the Blog as rhnews@elsevier.com. Finally, for what it’s worth, I think Casey Quinlan was onto something by crowning Dr. Greenbaum “Douche of the Week,” but after closer inspection of his Blog post, I hereby nominate him for “Worst Doc of the YEAR!!!” What do you think?

December 4, 2012

Dear Dr. Greenbaum:

The Patient Perspective

I do not have a medical practice like yours. In fact, I’m not even a doctor but I’ve been battling the autoimmune and incurable illness, Crohn’s Disease, for the past 30 years so I am somewhat of a “Professional Patient.” With that experienced perspective, I read your 6-paragraph Blog post dated November 30, 2012, entitled “Kiss My …” and I was repulsed by your utter disrespect and lack of professionalism, compassion and patience for your 75-year-old patient. Your behavior is unacceptable in ANY medical specialty but especially so in Rheumatology because that medical specialty is usually one of last resort for patients with chronic and/or inexplicable pain or conditions which other medical specialties are not able to identify. As a result, they refer these patients to doctors like you who then assume the great responsibility of often being the last bastion of hope for these long-suffering patients. But to learn that you vilify certain patients who merely “hassle you” in a written, GLOBAL forum, for all the world to read, for the rest of time, is disheartening at best and “creepy” or even criminal at worst, in terms of your compliance with HIPAA requirements and possibly even Billing Fraud, depending upon your actual billing practices in the event you accept Medicare and Medicaid patients and payments.

HIPAA & Patient Privacy

More specifically, I believe your November 30, 2012 Blog post about this 75-year-old’s patient’s medical ailments and complaints is an egregious violation of at least the spirit of the “HIPAA” law which was enacted to require Providers to follow procedures that ensure the protection and confidential handling of protected health information such as ‘personally identifiable health information’ held or disclosed in any form including orally, written and electronically. The HIPAA laws are simultaneously general and specific and often difficult to abide by or enforce, except if you follow a simple logical rule. That is, treat ALL patients’ privacy and records with the same conscientious care you’d use in handling the medical records of a beloved family member. While you did not disclose this 75-year-old’s name, you may have disclosed enough information in this Blog post that he, his family members and his former physicians, might be able to figure out exactly whom you were talking to, and about, in the Blog post. Accordingly, and applying the aforementioned rule of logic (and compassion), if that was your 75-year-old mother, would you want a fellow physician to talk about her like that to a GLOBAL audience via a written Blog post?

The following passage is the 1st paragraph of your Blog post:

If your practice is like mine, you probably don’t bill for “consult level 5″ very often. That is the most expensive level of care on our office super-bill, and I usually reserve it for patients with huge volumes of records, patients who take an inordinate amount of time, or patients who annoy me in some other extraordinary fashion.

Billing Annoying Patients More than other Patients

As a chronic patient with voluminous medical records, I can surely understand your policy of charging a patient more if he or she requires a significant additional amount of your time than the typical patient. That said, and I do this with my doctors, if a patient comes in for a consult and clearly demonstrates that he or she organized their medical records in a succinct and logical fashion out of respect for your time, there should be no additional charge. After all, in such a situation you are merely doing your job but in a more diligent manner due to the rigors associated with the complexities of a particular case. Regardless, I guess doctors could disagree about billing practices in such situations but YOUR credibility is lost when you stated you’d charge more for “patients who take an inordinate amount of time, or patients who annoy me in some other extraordinary fashion.”

Who is to judge if a patient is taking an “inordinate amount of time?” Maybe they are handicapped, disabled or simply nervous about telling you their story after being disappointed or intimidated by so many doctors on their journey to simply being diagnosed? Maybe their underlying illness causes a condition which affects their ability to act in a “normal” fashion? Have these possibilities ever crossed your mind when you devised your God-like billing practices which I am sure run afoul of Medicare Billing Practices? What about the patients who “annoy [you] in some other extraordinary fashion?” I am quite familiar with the “Current Procedural Terminology” billing codes or “CPT” codes and I have never come across a CPT code for charging a patient more simply because they are a pain in the ass. How do you justify that? Don’t you realize that by admitting you do that, you are possibly committing billing fraud? Again, have you ever stopped to think that these “difficult” patients are merely scared from having fought through the arduous bureaucratic healthcare system in the United States? If that’s the case, do you really think it is fair to force them to, in essence, pay a “tax” for having put up with pain, disappointment and frustration? If life were fair, these courageous folks would get a DISCOUNT for all their troubles!

In Paragraph 2 of your Blog post, you state:

I charged him level 5 for taking so much of my time, for bad-mouthing his previous doctors, and for incessant whining. Although he had developed RA only about a year and a half ago, he gave a long and ruminating description of his treatment, or mistreatment, as he saw it. (Underline and Bold Emphasis Added.)

You Charge Extra for Whining Patients?

So, you charged this 75-year-old man a higher patient fee than usual because he was bad-mouthing previous doctors, whining about his situation and providing you with a boring patient history? As a person trained to be a medical doctor, what type of “telepathic” training enables you to make these decisions? Perhaps the patient wasn’t “bad-mouthing” his previous physicians and just trying to tell you the truth about how he was treated by previous physicians? Or, are you of the belief that physicians can never be wrong nor can they ever mistreat a patient? We both know that the truth is probably somewhere in the middle but you seem to classify anything a patient says as “suspect” simply based on its source.

Then you cited him for “incessant whining” as if you knew exactly what it felt like to go through all he had to in order to get to see you, such that you knew what to differentiate as “whining” from what was simply the articulation of chief medical, physical or emotional complaints. How arrogant are you? I suspect the only pain, disappointment and frustration you feel is when the new Mercedes Class of cars comes out and your present lease is not yet expired. Do you have any idea what it is like to do battle with the pervasive effects of an incurable, painful chronic illness like Rheumatoid Arthritis (“RA”)?

What do you know about suffering from Rheumatoid Arthritis?

Do you have any idea about the physical, medical, mental, financial, emotional, professional, psychological, social and familial effects a chronic, inflammatory, autoimmune disease like Rheumatoid Arthritis can have on a patient? You obviously DO NOT as demonstrated by you classifying this troubled 75-year-old patient as one prone to inappropriate “incessant whining” and writing that in a Blog for the whole world to read as if THAT will educate people about RA and help them cope with the horrific disease. What’s worse is that you used these observations to justify charging this poor patient more than usual when it is this type of RA patient who needs a doctor willing to show some compassion and understanding and spend an extra few minutes with him. Based on your “golf club bedside manner” and “scale of annoyance billing practices,” you should be barred from treating patients with chronic diseases like RA which have such serious pervasive effects. Moreover, based on this Blog post, I wouldn’t trust you cutting my dog’s toenails, and I’m not even through the 2^nd paragraph!

Do you discount bills when YOU Whine to Patients?

Then, before the 2^nd paragraph ends, you WHINE about the apparent thorough Patient History you were given by this 75-year old. Following your example, should this patient then get some type of refund for the amount of whining you did during the consultation? You tempered this “Patient History” with the phrase, “as he saw it.” From what other perspective was this patient supposed to give you a Patient History? Do you put ANY stock in the words of patients? Have you forgotten that your most effective tool in medicine is your ability to LISTEN? Then you included very specific patient notes in this Blog post about the patient’s response to Prednisone. I reiterate that such a specific notation could help identify the patient and then cause a HIPAA violation. I am only commenting on this Blog post because YOU made it public and I want to make sure you don’t do this again with another patient.

A 75 year-old just being 75

In Paragraph 4 you reveal one of your trade secrets: “If all else fails, examine the patient.” Apparently, it was a very long patient interview because the man is 75 YEARS OLD and that logical concept seemed to escape the grasp of your narrow mind. While examining him you added that “[j]ust for good measure, he spent some more time bad-mouthing his previous foot-doctor.” Dr. Greenbaum, this man is 75-years-old and “talking” is what a person of his age does. But that does NOT give you license to broadcast his “issues” on a Blog for the entire world to read especially in such a negative light whether he has a little Dementia, he had valid issues regarding his previous foot doctor or he was just being 75. In Paragraph 5 you indicate he had a “bunch of other chronic medical problems including neuropathy.” Was was it then a surprise to you as to why he had such a long Patient History? Maybe he was recently widowed and didn’t know how to organize his medical records or thoughts properly. Did you ever think of that or do you simply look at test results or use you telepathic skills to diagnose and treat a patient?

You have the sincerity of a 3-Card Monty Con Artist

In Paragraphs 5 and 6 you indicate that you and he exchanged banter about you knowing his neurologist. You indicate at the beginning of Paragraph 6 that “I always think patients feel a little more confident when their doctors know one another.” However, you prefaced this logic saying “i[t] was a throwaway comment on my part….” What does that mean? Do you really want to make a “connection” with a patient and make them feel comfortable or are you doing the least amount of connecting as possible just so the patient doesn’t out you for the jackass that you are? Then you explained the weird response you had elicited from this 75-year-old but, even by your account, it seemed like the patient was “playing” with you and trying to make some sort of “connection,” albeit a strange or unorthodox one, just as you claim you sought out to do by indicating you knew his neurologist. Observing the situation you wrote: “He didn’t seem demented or hateful, just weird.”

You Have the Bedside Manner of a Handball

Dr. Greenbaum, by your OWN ACCOUNT, the only person who seemed weird in the encounter you chronicle in this Blog post is YOU. What does “hateful” have to do with anything in a physical medical examination, especially one in which you couldn’t care less (and didn’t ask) about any stressful situations in his life affecting his medical condition? The fact that you wrote this all down and included it in a Blog post seems indicative of your instability as a person and possible incompetence as a physician. You’ve potentially violated a patient’s privacy and simultaneously revealed how you go about treating and billing a patient. You have the bedside manner of a handball and if there is a place in medicine for you, it is either in research or radiology, where your training can serve you and others well, and you will not have to interact with any live patients.

Become a Radiologist or Live up to your Responsibility

Lastly, if this 75-year-old man was your Father or Grandfather and you came across this Blog post on the Web, how would you feel? You, as a Rheumatologist, are the source of last hope for many chronically ill patients and they deserve to be treated with more compassion and dignity. I think your Blog post is disgusting and extremely troubling and I only hope that my informing others about this Blog post helps you take an honest look at how you are treating patients who, for whatever reason, rely upon you greatly. PLEASE try and live up to that responsibility.

Respectfully yours,

Michael A. Weiss

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Posted in Arrogant Doctors, Bad Doctors, Doctor Ratings, Doctors, Patient Consumers, Physician Ratings, Physicians, rating doctors, Rheumatoid Arthritis, Rheumatologist

Tagged arrogant doctor, Auto-Immune Disease, Chronic Illness, Chronic Pain, chronic patients, doctor ratings, Doctors, Dr Larry Greenbaum, Fibromyalgia, neuropathy, Pain, Physicians, Prednisone, RA, rating doctors, Rheumatoid Arthritis, Rheumatologist, Worst doctor, worst physician

Video Summary of 2012 “Partnership w/ Patients Summit” – Kansas City, MO

Posted on October 4, 2012 | 1 Comment

A few weeks ago, I had the good fortune of being awarded a “Travel Scholarship” from the Society for Participatory Medicine and other generous sponsors to attend the “Partnership with Patients Summit” in Kansas City, Missouri (Friday, September 21, 2012 through Sunday, September 23, 2012). Mere words can’t fully describe the inspirational experience of meeting similarly-minded people who are so passionate and dedicated toward empowering patients so that their healthcare experiences are humane, effective and affordable. Ergo, the six (6) SHORT Video Interviews below. The Attendees included chronic patients/advocates like me, various specialty doctors, pharmaceutical executives, healthcare delivery system representatives, healthcare news reporters and social media experts adept at helping patients and providers communicate with one another.

The Summit also focused on helping Advocates become polished professional speakers so that they could reach more people with their message and get paid a reasonable fee for doing so. To that end, the generosity displayed by experienced Speakers like Regina Holliday (also the Organizer of the Summit) and “e-Patient Dave” deBronkart was extraordinary.

Rather than write a long Blog post about all that I learned at the Summit and the very kind “Twitter people” it provided the opportunity for me to finally met, I conducted the Six (6) SHORT (i.e. 5-7 minutes) Video Interviews pasted below with folks whom I thought were representative samples of the overall Summit experience. I wish I could have interviewed many more people but it was difficult to keep up with the fast pace of the Summit and also try to document it all on Video. Thus, I recorded a few Interviews in-between sessions and I think by watching them you will get an accurate “feel” for the Summit experience.

I hope you take the time, whenever you have the time, to watch all, or some, of the Videos because the “Partnership with Patients Summit” was truly a collection of passionate people uniquely dedicated to improving the “patient experience.” As a patient, I am thankful for those efforts, and as an advocate, I learned a great deal about reaching more people with my message.

Interview with Evelyn V. McKnight, AuD: Below is a 5-minute Interview with Evelyn V. McKnight who formed the HONOReform Foundation after being infected with Hepatitis C while undergoing chemotherapy for stage III Breast Cancer in 2000 because her oncology nurse commonly reused syringes to access a multi-dose container of saline while flushing several patients’ IV ports.

Interview with Licensed Psychologist Dr. Ann Becker-Schutte: As a patient with a chronic disease for almost 30 years (i.e., Crohn’s Disease), I’ve rarely come across a Psychologist who can compassionately relate to the daily challenges I face. However, I was fortunate to meet such a rare doctor when I became acquainted with Dr. Ann Becker-Schutte at the Summit. Dr. Becker-Schutte is also a patient with a chronic disease (namely, Polycystic Ovary Syndrome) from which she almost died so she also has a unique perspective about “End of Life” issues. Dr. Becker-Schutte represents the other similarly genuinely dedicated providers I met at the Summit.

Interview with the ultimate e-Patient “Facilitator,” Lisa Fields: Below is a 6-minute Interview with one of the most prolific e-Patient “Facilitators,” Lisa Fields. Besides being so pleasantly surprised to meet her in-person after 18 months of being the recipient of her Twitter “wisdom,” I was able to get Lisa to share some of her “secrets to success” regarding Twitter, Social Media, Public Speaking, PowerPoint and Ignite Speeches.

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Interview with Olga Pierce, Reporter, PRO PUBLICA, an Online News Organization: “Journalism in the Public Interest” is the tagline for PRO PUBLICA. With respect to Healthcare stories, PRO PUBLICA “bridges the gap” between Policy and Patient through a business model of Collaboration by which they share their stories with such prominent News Outlets as “Frontline,” NPR and USA Today. Olga was kind enough to talk with me about her role as a Healthcare News Reporter in this process.

5 Minutes w/ Patient Advocate Extraordinaire, Regina Holliday: Regina is a highly regarded Patient Advocate and, as I was to learn, she employs very creative methods to help improve the “healthcare experience” including her artistic creation of, and contributions to, “The Walking Gallery.” In this 5-minute Interview, Regina explains the specific objectives of the “Partnership with Patients,” we discuss how “The Walking Gallery” got started and she shares valuable information about getting started as a Paid Healthcare Speaker.

Family Practice Physician with a “Neu” Business Model: In this 6-minute Interview, I chat with Dr. W. Ryan Neuhofel (“Dr. Neu”) about the innovative new Business Model he uses for his Family Medicine Practice in Lawrence, Kansas. He doesn’t take ANY health insurance but charges his patients a nominal “Membership Fee” ($10 – $20) and then simply bills for his time in 15-minute increments. He also utilizes a great deal of technology and Health Care Social Media so that his patients can literally have 24/7 “continuity of care.” The combination of his intelligence, passion, logic and ingenuity attributes seem to make for an excellent Family Physician.

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Posted in Assertive Patient, Empowered Patient, Health Care Social Media, Health Technology, Hospital Patient Experience, Inspirational, Partnership with Patients Summit, Patient Advocacy, Society for Participatory Medicine, The Empowered Patient

Tagged "Health Care Social Media", Advocacy, Crohn's Disease, Crohnie, Crohnies, Doctors, e-Patient Dave, e-Patients, HCSM, Healthcare, Healthcare Conferences, Hep C, Hepatitis C, Honoreform Foundation, Ignite, Ignite Speech, Michael A. Weiss, Patient Advocate, Patients, Physicians, Polycystic Ovary Syndrome, PRO PUBLICA, Providers, Regina Holliday, Society for Participatory Medicine, Speakers, spoonies, The Walking Gallery, TweetChats, Twitter, “e-Patient Dave” deBronkart

Hospitals “Feel Like Prison”

Posted on August 21, 2012 | 3 Comments

This is a 4-minute Video snippet of a WEGO Health-sponsored “Patient Panel” which focused on the “Hospital Patient Discharge Process.” I was asked to participate in the Panel due to my vast and lovely experiences being “Discharged” from over 200 hospitalizations as a result of 30 years battling Crohn’s Disease.

I’ve worked with WEGO Heath before and each time I am more impressed with their corporate style. It’s probably because they let me, be me, and never filter my opinions. Let’s just say WEGO Health appears to be a very cool company because they practice what they preach: “Empowering Health Activists to Help Others.” We need more companies like WEGO Health to provide these types of Patient platforms from which Health Activists can convey the “Patient Perspective.”

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Posted in Chronic Illness, Crohn's, Crohn's Disease, Hospital, Hospital Discharge, Hospital Discharge Process, Hospital Patient, Hospital Patient Experience, Hospitalizations, Hospitals

Tagged Crohn's, Crohn's Disease, Crohnie, Crohnies, Doctors, Hospital Discharge, hospital patient, Hospitalizations, Hospitals, Patients, Physicians, WEGO Health

Modernizing the Hospital Patient Experience

Posted on July 21, 2012 | Leave a comment

Perchance to Dream: Improving the Hospital Patient Experience

Earlier this week I was invited by Wego Health (whose unique corporate mantra is “Empowering health activists to help others.”) to participate in a videotaped Virtual Patient Panel to help the company ExperiaHealth (“Experia”) (whose corporate motto is “Humanizing the Healthcare Experience”) in improving the “Hospital Patient Experience,” and in this case, specifically the Discharge Process. Unbeknownst to me, Experia has been doing this for quite some time in at least 15 significant hospitals across the country. Who knew that while I was being hospitalized all over the country being constantly awoken at 3 AM to take a sleeping pill or harassed by the hospital’s television collection service for $6.00 when I was practically in the surgical recovery room, that such an incredibly necessary company was implementing many of the things I had been complaining about after 200+ hospitalizations. I guess if you live long enough, life will pleasantly surprise you. That’s why, incidentally, I always tell chronically ill people with incurable illnesses such as Crohn’s Disease that, “the longer you live, the longer you live.” What I mean is that the longer you live, the better your chances are for new and more effective treatments, or even a cure, being discovered. Hence, this Blog Entry is indirectly about how a dream of mine, i.e., attention being paid to improving the “hospital patient experience,” is now being actualized and I am also involved in helping to carry out this new reality of mine and of thousands of hospital patients around the world.

The Business Side of Healthcare

When I got to meet the Experia Patient Panel Moderator, Elizabeth Boehm (“Liz”), whose title is Director, Patient Experience Collaborative; I was shocked that such thoughtful and compassionate people worked on the business side of healthcare. Up until now, I had assumed all healthcare executives were solely focused on providing the best patient care at the lowest price paying no mind to the often physically and mentally painful & unnecessarily demeaning experiences patients must undergo to achieve these corporate objectives. More specifically, I always envisioned the healthcare “business” functioning like the inner-workings of an automobile manufacturing company which always developed the coolest looking, fastest driving and most fuel efficient cars without giving any consideration to the driver “experience” or if a typical-sized driver could even fit into these sleek fast-moving machines without their ever-expanding waistlines rubbing up against the steering wheel and preventing a tight left turn.

Perhaps the car drove too “hard,” the seats were too stiff and the drivers developed hemorrhoids within the first 5,000 miles or the driver’s seat had to be so low and devoid of lumbar support that spine fusion surgery was inevitable within the time frame of the usual bumper-to-bumper warranty. Despite these rather significant driver inconveniences, the automobile company’s marketing programs for these slick new macho machines created great demand and the general public assumed that drivers just lied or never mentioned the aforementioned downsides because no schmuck complains about being seen driving around in the best vehicle money can buy. That’s like dating Jennifer Lopez and complaining to the Press about her ridiculously over-sized derriere.

A stretch, maybe; but I’ve always envisioned the business-side of Hospitals operating exactly like this where patients and their friends or families of patients assumed that quality patient care came along with occasional horrific, unsanitary and demeaning personal experiences. However, I was never convinced that my friends and family understood the frequent lack of humanity and common decency encountered by hospital patients. It just went unspoken in my world until I wrote a Book about my experiences (see below). As a case in point about the public’s acceptance of quality healthcare at whatever temporary painful cost to the patient: Did television viewers ever watch the critically acclaimed show “ER” and even once witness: consistently disgusting hospital food; patient roommates who destroyed shared patient bathrooms almost as if they had a license to live like they were in a monkey cage for a few days; condescending doctors to whom patients had to follow out of their rooms like Peter Falk’s “Lieutenant Columbo” sans rain coat just to finish asking a significant question or two; or nurses with borderline evil bedside manners whose lack of compassion was only surpassed by their robotic personalities?

The Value of being a Professional Hospital Patient

But after listening to Experia’s Liz Boehm explain the Patient Panel’s objectives, style and procedures, I felt like I had been summoned into the principal’s office and instead of being chastised for my bad behavior teasing a girl I was actually smitten with, I was heralded for possessing certain unique knowledge that he found helpful in improving the effectiveness of teachers and education. I have to admit that during those first few moments of this Patient Panel, the experience felt pretty cool because my Crohn’s Disease had now apparently qualified me for something other than Miralax. I was so surprised at my almost “reversal of fortune” role in this Patient Panel that it felt as I had been sleeping for 5 years and when I awoke Tom Brady of the New England Patriots was President and Anne Hathaway was making me breakfast wearing nothing but a Tom Brady jersey.

Truth be told, I wrote a Book about this in 2001 called, “Confessions of a Professional Hospital Patient,” because there was so much wrong with the “hospital patient experience” I felt there was a story to be told which could shed some light on significant but subtle problems almost every person in the world would someday experience since everyone gets sick and most people don’t get through life without an adult hospital stay or two. Thankfully, my Book was critically acclaimed and it continues to sell as “the most accurate and honest depiction of the ‘hospital patient experience’” but to make sure Ms. Boehm’s aim was as true as Elvis Costello’s, I had a few questions for her about Experia and their hospital patient experience venture.

Who is ExperiaHealth?

In short, Experia’s website (see http://www.experiahealth.com/about.htm) lists its description and corporate objectives, which thus far I can attest to being 100% accurate, to be as follows:

ExperiaHealth is a leading experience improvement company that delivers breakthrough services and technologies to improve the patient and employee experience at hospitals and clinics nation-wide. ExperiaHealth’s aim is to accelerate adoption of practices and technologies that improve outcomes, create value for patients, and restore the human connection in healthcare.

Ms. Boehm’s qualifications are also listed on the Experia website and she too is uniquely qualified and dedicated to the cause my life has been dedicated and directed to once I was diagnosed with Crohn’s Disease approximately 25 years ago. At the risk of embarrassing Ms. Boehm for her impressive and thoroughly focused career of helping to improve various difficult life experiences, below is the website’s description of her background:

Elizabeth Boehm, Director, Patient Experience Collaborative

Liz Boehm is the Director of ExperiaHealth’s Patient Experience Collaborative where she brings a wealth of expertise on defining and implementing new innovations in healthcare experience, and helping hospitals and care providers create lasting value for patients and caregivers. Through the Collaborative, she helps ExperiaHealth’s clients create a competitive advantage via the sharing and adoption of practices and technologies that improve outcomes, create value for patients, and restore the human connection in healthcare.

Liz joins ExperiaHealth from Forrester Research where she was a principal analyst serving customer experience professionals in the healthcare and life sciences industries. During Liz’s 15 years at Forrester, she worked with the country’s top hospitals, health insurers and life science firms to craft customer experience strategies and drive business value through improved customer engagement. She joined Forrester in 1997 and co-founded Forrester’s healthcare and life sciences research practice in 1999.

Before joining Forrester, Liz was a health extension volunteer with the Peace Corps in Burkina Faso, West Africa and graduated from Amherst College with a degree in women’s and gender studies.

“Patient Experience Managers” are part of an emerging industry. Who knew?

My awareness of the efforts of people like Ms. Boehm and companies like Experia first came to light thanks to a comment I received on my Blog which pointed out that the hiring of “Patient Experience Managers,” or PEMs, is an emerging field in healthcare. It was also only a week ago during the “Best 60 Minutes on Sunday Night,” a/k/a the “Health Care Social Media” TweetChat at 9 PM EST, when a new Twitter buddy suggested the possible creation or existence of PEMs. I had responded to what I thought was his unrealistic suggestion by essentially saying, “Dream On.” Well, thanks to the tenacious efforts of true Patient-centric organizations like Wego Health and Experia, I’ve learned there are actually current formidable efforts to modernize the “hospital patient experience” so that it’s quality catches up to the technology-driven increase in Patient Care. Maybe now hospital executives won’t immediately dismiss my idea to create YouTube channels in all hospitals to distribute interesting and entertaining hospital employee-created and hospital patient-created content to replace the almost “stick-figure” and “birds and the bees” videos which are currently looped on “medical information channels” shown on hospital patient room televisions. Ever see a stick-figure drawn person get a colonoscopy? Check into an old hospital and channel-surf.

Influencing the Hospital Patient Experience

In any event, this Virtual Patient Panel consisting of myself and two (2) other experienced patients, Jody and Alicia. Wego Health had their technology guru, Aaron, somehow connect each of our computer web cams to one hub such that it seemed we were on stage together being interviewed by Elizabeth Boehm, Director, Patient Experience Collaborative, Experia. It’s funny but when I first saw Liz’s title, “Director, Patient Experience Collaborative,” I thought I was in the Twilight Zone or had just walked out of the 1973 futuristic movie, Westworld. But once she began to ask such thoughtful questions to elicit useful information about our respective patient experiences, I began to feel as if all I have gone through in 200+ hospitalizations in various cities around the United States might actually have a certain aggregate value because now someone is listening to me who has the interest, motivation and even the influence to make experience-improving changes in the “hospital patient experience.”

However, since I am always candid and also inherently suspect of think-tank studies and managerial guru bullshit and I had never seen meaningful patient-centric job titles before in the many hospitals I’ve done time at, I asked “Liz” (she insisted we call her by her first name so the atmosphere was very casual) where in the United States are these hospitals who actually care about the quality of the hospital patient experience? She then listed 15 prestigious hospitals and told me a little about other similar targeted efforts of Experia. I was sold as she had me at “15.” Moreover, after hearing my various answers and ideas throughout the 2-hour Patient Panel, Liz later commented that she was purchasing my Book, “Confessions of a Professional Hospital Patient,” for each of these 15 hospitals because I guess she was intrigued by my brutally candid yet respectful approach toward medical institutions and medical professionals despite having survived through so many nonsensical and avoidable demeaning and painful experiences within their respective control.

You’ve Got the Cure, Ooh, it’s your Attitude (the “Kinks”)

In terms of learning from my past experiences, especially those pertaining to the “hospital patient experience,” I try to think like a dog because I don’t want a negative experience to forever taint my intellectual capability to contribute to improving the hospital patient experience. For non-animal lovers, this means I try to have the memory of a Short-Reliever Pitcher in Baseball so that one horrific experience doesn’t haunt anything I do, say or feel moving forward. It’s like the lyrics in the Kinks song, “Attitude”:

You might have the illness, but you’ve got the cure
You’ve got the answer, you will endure
You’re the only person that’s gonna pull you through
Ooh, with your attitude

Chorus
Attitude, Oo Oo Oo
Your attitude
Attitude, Oo Oo Oo
Your attitude

In my youth it wasn’t so easy to have such a short memory and pleasantly forget about the times a Nurse Ratchet-type insisted on re-inserting my Foley Catheter because, crazy me, I had been urinating into the toilet and not into a urinal container where they could measure my “urine output” since the doctor had removed the Foley Catheter earlier in the day and that was the hospital’s protocol – which I was never told about – or being hounded by the hospital television payment collection service while I was still in the midst of coming out of anesthesia from spinal fusion surgery. While the $6.00 collection episode did not leave a permanent scar on me, I will never forget this innocent 17-year-old kid carefully nudging me to tell me I owed $6.00 for 2 days of renting the hospital’s television. I do remember, though, motioning him to come VERY close to my mouth to ensure he would hear my painfully strained answer when I said: “Do you really think this is the best time to try and move me, even an inch, to get my wallet and pay you $6.00 when it has to seem patently clear to even a moron that I am not a “high risk” flight patient?” After contemplating for a few seconds the fallout he’d face from his boss Skippy, he nodded in agreement as if my answer was reasonable, but I wanted to share my surgical pain with him in the worst way. What was once a painful memory is now a funny story. It’s all in your Attitude.

Why the Focus on the Hospital Patient Discharge Process?

The questions posed to each of us on the Patient Panel seemed to focus on the Hospital Discharge process because according to Liz various studies had apparently indicated it as either the most troublesome spot for hospitals and/or that the Discharge process was an area most easily quickly improved. When asked a related question, I politely told Liz that in my humble opinion the studies seem wrong because, and just by way of quick example off the top of my mind, starting Intravenous Lines with the dexterity of a Plumber, among other aspects of the hospital patient experience, seemed a little higher on my priority list for needing improvement since patient IV lines are the standard MO in all hospitals and initiating them is likely the most intimate activity that goes on between a patient and a medical professional besides memorable rectal probes. My body gets over the occasional over-zealous rectal exam quickly but there are parts of my forearms which are still black and blue from my June, 2012 17-day hospital stay and areas around my wrist still smart and throb if they come into contact with merely fabric while I toss and turn trying to fall asleep at night.

Standardizing the times of Morning Doctor Rounds

Liz duly noted my comment and apparent well-rounded knowledge of hospital problem areas but as per her suggestion I decided to focus on the task at hand. To that end, I classified the hospital discharge process as essentially one big cluster-fuck which could only be helped if doctors committed to standard “morning round” times so that patients could properly organize the various aspects of their departure which are not under their control. This includes getting all written orders from doctors, all prescriptions, all warning signs and the patient’s coordination of obtaining a ride home from a family member or friend. This reminded me of the numerous times when the hospital patient room had a sign on the wall which indicated all discharged patients must leave the room by 10:00 AM and I would tell a friend to come pick me up at 10:00 AM only to have to wait until 12:30 PM when one of my doctors would decide to stroll into my room to finalize my “orders” and write the necessary prescriptions for me to go home. As a result, my friend or family member would have to completely reorganize their day and me and my Crohn’s Disease became an even bigger pain in the ass to them. Accordingly, besides the logical implications of a more organized “Discharge Process” which takes patient needs into account, I think a more consistently standardized “morning rounds” physician schedule would give patients back some “control” over their situations which they understandably have to relinquish upon entering the hospital for the purposes of being treated most effectively. I also think resuming control of one’s life is of therapeutic value and thus an aid toward the recuperative process so that’s another rationale for consistent standardized “morning round” times.

My Worst Hospital Discharge Experience

Liz also asked each of us about our worst experience being discharged. My knee-jerk reaction left me with no specific answer other than to discuss the myopic almost survival-like state of mind necessary to “do time” in the hospital environment such that a quick re-admission to the hospital is the worst possible scenario and could lead to scarring mental conditions such as post-traumatic stress disorder. Then I remembered when that happened to me at a world renowned hospital (from which I am now banned for life, by the way, for not letting them treat me a certain way medically when I knew they were wrong and later proved they were wrong by being diagnosed differently at another hospital) and how defeated I felt when repeated projectile vomiting in a hotel room across the street from the hospital left me with no choice but to return to the same floor in the hospital for another 15 days or so. To that end, I will never forget the words of “wisdom” some moronic Intern rationalized with me when I was initially prematurely discharged and my belly was so distended I looked like The Michelin Man. He said: “Sometimes you are healthy enough to be discharged from this hospital but not well enough to go [fly] home.” It was such a load of self-serving crap and literally put my life in serious jeopardy as I almost joined music greats Jimi Hendrix, John Bonham, and **Eric “Stumpy Joe” Childs [from the band “Spinal Tap”] in the “Big House” as a result of choking on their own vomit. [**Technically, Eric “Stumpy Joe” Childs choked on someone else’s vomit but he is a fictional character, as his band, “Spinal Tap,” was created for the hysterical 1984 parody film rockumentary, “This is Spinal Tap.”]

The Perils of Patients Letting their Mental Guards Down

The two (2) other patients had some excellent suggestions for Liz in answering her variety of questions surrounding Improvement of the Hospital Discharge Process but I will leave those for the Video I am sure Liz and Experia will be compiling. As for me, I brought up how the mental discipline required of hospital patients to maintain their sanity could get loosened up a bit once they start hearing the word “Discharge” (in much the same manner as Prisoners with the word “Parole”) so doctors need to be very careful when broaching the subject and condescending remarks alluding to Discharge could actually be hurtful to patients if they are based on style and not substance. For some patients, I suppose premature enjoyment of the prospect of being paroled from the hospital is fine but, in all seriousness, it takes such intense mental discipline to adjust to the prison-like privacy parameters of a hospital during long hospital stays that delusions of grandeur can quickly set in if the word “Discharge” is recklessly thrown about by a medical professional in the hospital patient’s room. This might sound like an exaggeration to folks unfamiliar with the hospital patient experience but some doctors use the lure of “Possible Discharge” to get their depressed patients from one day to another and there are MANY depressed patients in the hospital especially around holidays and before weekends. Perhaps this is a necessary medical tactic but when it fails, the depression becomes overwhelming.

Identifying ALL Treating Medical Professionals on Discharge Paperwork

I also conveyed to Liz that I believe STRONGLY in receiving written Hospital Discharge paperwork which includes a detailed list of all the doctors and other medical professionals who treated me so that when I receive a Bill for $920.00 for three (3) in-hospital consultations by a Dr. Kardashian, I need to know who is trying to get paid for these services apparently rendered to me. This has been a problem for me when, for example, I did not ask for the services rendered such as in the case of a psychiatric consultation sought by my condescending surgeon who couldn’t understand why I wouldn’t go along with the premise that he is God and therefore he couldn’t possibly be wrong about why I still couldn’t properly digest food so many days after his surgery.

I have also had situations where a mental specialist comes to “see me” every day I’m in the hospital just to “see how I am doing” all the while expecting to get paid by at least my health insurance company. Sometimes it has been an honest misunderstanding and the psychiatrist had the purest of intentions. But, more often than not, it appeared to be a scam once I recuperated and looked through the billing paperwork when the hospital bills started rolling in around 3 weeks after my Discharge. In such instances, I am crystal clear with the psychiatrist in the hospital that I do not wish to retain his or her services and I denote in writing the date this conversation takes place. It then becomes comical when the same doctor returns the next day offering to “discuss” why I don’t think I need his services and then weeks later I see psychiatric services “rendered” that 2^nd day in the hospital on an invoice from the psychiatrist as if he treated me that day “to discuss why I feel I don’t require psychiatric care.” Accordingly, I told Liz it would be nice to have a list of the “good, bad and the ugly.” I also brought up to Liz how the Discharge process and even the entire hospital patient experience can be affected by disease-specific issues and it shouldn’t be. For example, in some hospitals, Pediatric and Cancer patients get the white-glove treatment during the entire hospital patient experience whereas patients with Crohn’s Disease, Diabetes or Fibromyalgia are treated like the brother on “Keeping up with the Kardashians.” What’s his name?

“Discharge” by any other name is still a Legal Term of Art

Liz also asked if “Discharge” should be called by another name to downplay its apparent troublesome meaning to-date or to brighten up the Discharge Process for patients who have good hospital patient experiences and positive medical outcomes. However, the attorney in me knows that some type of word or phrase is necessary to transfer medical liability away from the hospital when the patient leaves the hospital to properly apportion potential separation liability so phrases like “Recuperation Time” or “Going Home Time” are good ideas but not very practical because then lawyers wouldn’t know where to draw the line of culpability should the patient relapse or get worse after leaving the hospital.

The Conclusion: Humanizing the Healthcare Experience

Like I said at the very beginning, in my humble opinion the Discharge Process from a hospital is a cluster-fuck. While I sincerely appreciate the efforts of companies like Experia and people like Liz, I think the hospital patient experience could be more quickly modernized by focusing on basic human kindness and the logical opportunities for improvement which pop up throughout the hospital patient experience for medical professionals to treat patients the same way the medical professionals would want to be treated if they were patients. That said, however, this is all finally beginning to make sense and I feel confident that companies like Experia and people like Liz are totally on the right track especially when their stated goal is: Humanizing the Healthcare Experience.

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Posted in "Confessions of a Professional Hospital Patient", Hospital, Hospital Patient, Hospital Patient Experience, Hospitalizations, Hospitals, Patient Customers, Patients as "People", Physicians as Service Providers, Professional Patient

Tagged "Confessions of a Professional Hospital Patient", "Health Care Social Media", Crohn's, Crohn's Disease, Doctors, Elizabeth Boehm, Experia, ExperiaHealth, Healthcare, Hospital Patient Experience, Hospitals, Michael A. Weiss, Nurses, Patient Experience, Patient Experience Collaborative, Patient Experience Managers, Patients, Physicians, Spinal Tap, Wego, WEGO Health

Health Care Social Media (“hcsm”) – Its Potential & Power

Posted on May 24, 2012 | 3 Comments

The cool thing about the Web, Mobile Stratosphere and Social Media is that no-one owns them and no one ever will. Health Care Social Media, or “#hcsm,” as it is known on Twitter, combines the different Healthcare Social Media Web/Mobile “platforms” and devices such as Twitter, Facebook, Portal Websites, Blogging, Applications, YouTube Videos, Podcasts, Smartphones and Webinars with often instantaneous global connectivity and growing virtual communities made possible by the Web and Mobile technological environments. The constant emergence of new platforms and devices and an increase in the global use of these technological environments for healthcare purposes makes the potential of hcsm limitless. Moreover, hcsm will always be defined, refined and influenced by the patients, healthcare professionals, medical school students, teachers, executives and attorneys who use it. In that way, hcsm will forever remain an ever-changing medium of valuable virtual communities, different usages and individual expression. This makes hcsm both an effective Tool and an invaluable Resource for the diverse healthcare industry end-user. But much like pre-Game Batting Practice in Major League Baseball, hcsm end-users have different needs and go about servicing them in different ways.

Some Major League baseball players use pre-Game Batting Practice to show off their strength trying to hit every pitch into the home run bleacher seats just as some in Healthcare use hcsm to simply market their wares damn whatever self-promotion complaints they are berated by. But other ballplayers have great reverence for Batting Practice and treat it as an opportunity to simulate In-Game Live At-Bats and/or Live Situational Hitting. This latter usage of Batting Practice by ballplayers, by analogy, is how many experienced patients and Web-savvy health care professionals value hcsm. They see it as a way to share (or gain) knowledge and experience with (from) others.

However, even within that seemingly wide spectrum of hcsm end-users, there is a divergence of underlying rationales regarding the value, potential and power of hcsm. In fact, some factions within the healthcare industry seem to act proprietary over hcsm or even privileged towards it, yet, as stated above, no one owns it. This Blog Post, written by a chronic patient, addresses the unlimited potential of hcsm and theorizes that these differences in the perception of hcsm are caused by both generational factors and a new interpretation of the fast-evolving Doctor-Patient Relationship. If these differences can be replaced by a more collaborative spirit, hcsm can be a Game-Changer in Healthcare Reform.

The “hcsm” TweetChat – the Best “60 Minutes” on Sunday night

It starts out at 9:00 PM EST like any other TweetChat with people calmly introducing themselves and also explaining their healthcare industry interests; both, in fewer than 140 characters. It is fascinating to see doctors of almost every discipline, patients with various experience and differing attitudes, nurses, pharmacists, hospital administrators, drug company executives, health attorneys, medical school students and the like from all over the country eager to participate in this democratized “Conference” of sorts. Then, as the introductions speed up in anticipation of the professionally prepared Moderator introducing Topic 1 (of 3), you realize the TweetChat is actually comprised of medical professionals and hobbyists from all over the world.

There are definitely “Regulars” like myself who somehow manage nearly each and every Sunday Night to block out reality and step into this virtual world of such distinguished, passionate and dedicated folks but there are also “Lurkers” who simply watch and learn. What are they watching? They are observing some very smart and wise people who care deeply about the current and future state of healthcare trying to type as fast as possible to populate the #hcsm Twitter Feed with their insightful nuggets of information and experience so that their contributions are duly noted, possibly re-tweeted and hopefully expanded upon. At the same time, we are all genuinely interested in what our colleagues from a few continents away are writing about as they start their tomorrow or are just ending their work day. Therein lay the physical and mental challenges posed by what I like to refer to as the best “60 Minutes” on Sunday night.

Regardless of the night’s discourse, I am always amazed at the ever-increasing amount and diversity of people who attend each and every week. I mean, Sunday night at 9:00 PM EST is usually reserved for the beginning of the upcoming work week’s “Sunday Night Blues.” Instead, it now marks the start time for this “Think Tank” of renowned healthcare industry brethren playing this game of “type, read or re-tweet.” There’s no tangible benefit to participating in the #hcsm TweetChat. It’s just pure mental stimulation for the purposes of someday soon making a difference in an industry or in just one (1) patient’s life. It’s a humbling experience seeing virtual relationships being formed all over the world over mere thoughts and expressions. You don’t know where it’s going, and you don’t know what each night’s Topics will be, but you know you don’t want to be late and miss anything.

Talking ‘bout my Generation

I always try to represent a strong patient voice during the #hcsm TweetChat and it always strikes me how the younger folks (I’m 49 years of age) are so eager to look at things from a patient-centric and technology-driven perspective yet, in my reality, as a 30-year chronic patient, these great intentions are almost always over-ridden by the problem at hand. In that sense, we tend to regularly get into an intellectual debate about the role of education in the Practice of Medicine and I always state that I don’t want to be educated by my doctor; I just want to be treated. Many TweetChat members mistake my ostensibly short-sighted position as me not wanting to know what is going on with my health when I converse with my doctor but that’s not the case. I blame this misunderstanding on the 140 character limitation of Twitter and how it makes me lean on assumptions probably too much because I assume it’s a given that everyone wants to know what’s wrong with them. I just don’t want to place more job responsibilities on my physician whose plate is already full due to the intensive administrative paperwork necessary to merely seek financial Reimbursement from my Health Insurance Company. Besides, if many physicians also possess teaching skills, their bedside manners would be substantially enhanced and as a patient I’d rather see those teaching skills utilized that way instead of for the purposes of enlightening me about the origins of prostate cancer.

Also, the younger generations of #hcsm TweetChat participants tend to place an emphasis on Medical Practices making it a priority to not only have a Social Media Policy but to also consistently “publish” Content on their websites or on other hcsm platforms to help educate their patient populations. As a patient always appreciative of such efforts (and I applaud these aspirations), I nevertheless am against holding my physician ALSO accountable to various Publishing Standards. Sure, they could hire someone to create these materials, and many do. But I’d prefer these extra staff focus on patient pharmaceutical financial assistance or disability programs if the medical practice treats patients who are chronically ill and often become disabled and financially strapped because of their medical costs. As for the establishment of a Social Media Policy, I am convinced this will be necessary in the very near future but I seem to constantly have experiences with top-notch physicians who nevertheless have problems with their Telephone Call-Back Policy! Again, I applaud the idea and intention but in reality, and at this place in time, I’d prefer to see all resources used to enhance patient care.

I think it is a generational issue and I commend the younger folks for starting out with such patient-centric plans, but I want my health care professionals to simply treat me. I don’t want to learn how my situation stacks up against that of other patients and I don’t want my doctor taking time out of being on the “cutting edge of treatment” to publish a rather innocuous article, for example, about the symptoms of Crohn’s Disease which, given the professional, ethical and legal limitations he or she is up against, turns out to be no more than a marketing piece, despite the best of intentions to help patients. Maybe my simplistic perspective is due to the nuanced-filled complications of my chronic illness (i.e., Crohn’s Disease), but my doctors always seem so busy with one emergency after another that I just don’t understand when they would have the time to act as educator and publisher on top of being a doctor, which these days means more staff, more administrative work and higher malpractice premiums, all for less money than doctors typically made Ten (10) years ago. Let’s face it, these days, it’s tough being a Patient or a Doctor.

The Evolving Physician-Patient Relationship

I think the different perceptions of hcsm which indicate its more limited usage and potential are still held by intelligent, informed and dedicated healthcare professionals but these folks don’t account for the fast-changing Physician-Patient Relationship which is evolving every second, of every day, of every year, thanks to Social Media and to the Web/Mobile technological environments. Sure, mutual respect is still a mainstay in that relationship but mutual trust implies a familiarly between the two parties and with economic decisions increasingly forcing patients to “work their health insurance plans” and choose In-Network physicians, that trust often doesn’t get enough time to develop because employers could conceivably change their policies annually as premiums are raised. Thus, many Physician-Patient relationships only last as long as the policy makes financial sense for the employer. As a result, many employees are forced to change Internists or Gate-Keeper Physicians on an almost annual basis.

Alternatively, what I see more of in my experiences as a patient since the evolution of hcsm is “Collaboration” between Physician and Patient. This Collaboration seems to be a direct result of the opportunities for e-patients to learn more about their conditions and treatments via hcsm prior to their real life encounters with their doctors. This is making healthcare “transactions” more efficient and therefore more productive. Perhaps e-patients are more experienced because, like me, they must battle some type of chronic medical condition. That said, not all doctors are cut out to treat chronic patients as that necessitates an on-going relationship as opposed to the occasional “stop by” patient each time he or she has a problem. It’s not dissimilar to a man or woman more comfortable in casual relationships than in monogamy.

Similarly, patients must understand that someone touted as a great doctor might not be the right one for them, especially if they have a chronic illness. Likewise, doctors must now be more careful in picking their patients because the needs of a chronic patient are much different than those of a normal patient with occasional medical problems. Accordingly, once a healthcare end-user accepts “Collaboration” as an integral part of the “new” Physician-Patient Relationship, the potential of hcsm comes more into focus since the basic and driving healthcare relationship is now more “democratic” than ever before.

Power of hcsm to help Reform Healthcare

In the beginning stages of hcsm, I read many stories about how patient-formed business ventures on the Web couldn’t possibly succeed without the inclusion of a medical professional as its focal point. I always laughed at that because people of this opinion never understood the uniquely useful value in a Virtual Patient Community such as Crohnology.com, which makes Crohn’s Disease patients feel comfortable enough to share and be candid about their experiences in an environment comprised of only similar patients. What medical professionals did not realize is that with the advent of hcsm many patients now feel more comfortable talking about their symptoms with other patients on a preferred hcsm platform as opposed to talking with a doctor in the sterile environment of a Medical Practice when the doctor must quickly assess the situation so he or she can move on to treat the next patient.

Strangely, the intimacy of the doctor’s office has in many instances been replaced by a virtual “room” of people with similar medical problems. Thankfully, some very smart medical professionals listened to their patients and picked up on this and the power of virtual organized patients is now recognized and the necessary inclusion of medical professionals in Web business ventures is no longer the prevailing business theory just as “Return on Investment” or “ROI” is being abandoned as the short term touchstone for success of hcsm business ventures. There’s just no precedence to rely upon to make any realistic ROI forecasts.

At its core, hcsm is no more than a grassroots movement which, due to its timing, has been powered by technology such that it is now an influential worldwide phenomenon. In that regard, there are active hcsm affiliates in many countries throughout the world including, but not limited to, Australia, New Zealand, Asia, Austria, Canada, Europe, India, Latin America, Sweden, France, Ukraine and the United Kingdom. With Social Media objectives that are no different than that of the Entertainment and Music industries, hcsm strives to make Healthcare more: personal; readily available; user-friendly; efficient; and profitable. In doing so, these virtual hcsm patient interactions are becoming more intimate and patients are noticing by becoming more comfortable and candid.

This combination of intimacy, candor and commonality amongst virtual patient communities will soon make real-life Healthcare “transactions” more efficient, more productive and less expensive. After all, a patient with more tried and tested medical knowledge makes for a smoother and faster customer and that enhances the quality of real-life Healthcare transactions. Participation in hcsm provides patients with this type of “seasoned” information and that will also make their exchanges with medical professionals more efficient. The benefits of these time and quality patient efficiencies will eventually grant more people the opportunity to afford healthcare insurance to then obtain the medical treatment they need. This may seem like a rather attenuated connection but hcsm is quickly becoming relied upon by patients as one of their foundations when they seek medical treatment. No-one ever thought people would trust the Web with their banking needs but now people from all walks of life are conducting secure banking transactions with their cell phones. The benefits of technology are finally creeping into patient care and if banking is any barometer of its acceptance, hcsm will soon be a formal part of Patient Treatment Plans.

As hcsm becomes a part of everyday life and, like banking, there are television commercials praising its ease, even with a cell phone, the multifaceted interests of patients, doctors and hospitals will then merge because of hcsm. This alignment of interests will form a formidable foe for the Health Insurers who, ironically, have no interest in efficiency and increased productivity for fear each would reveal the GROSS inefficiencies which have kept them “in power” for so long. It’s no secret Health Insurers want to maintain the status-quo otherwise a Multi-Billion Dollar Industry would not be operated via handwritten doctor notes and medical records. So hcsm, no matter how it’s used, will organically negate the Health Insurers’ oil cartel-like business practices and then regardless of one’s perception of the power of hcsm, it could be that Game-Changer we’ve all been waiting for in our pursuit of Healthcare Reform.

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Posted in Health Care Social Media, Healthcare Reform, mHealth, Mobile Health, Patient Technology Tools, Tweetchats

Tagged "Health Care Social Media", 60 Minutes, Collaboration, Collaborative, Crohn's Disease, Crohnology, Doctor-Patient Relationship, Doctors, HCSM, hcsm TweetChat, Health Insurance Companies, Health Insurers, Healthcare, Hospitals, mHealth, Patients, Physicians, practice of medicine, Reimbursement, Social Media, TweetChat, Virtual Patient Communities

In-Network Doctors – Quantity over Quality

Posted on May 16, 2012 | 1 Comment

Last Friday, I went for an annual Ophthalmology “check-up.” Since my Eyes are not my primary medical concern and I’m broke from all my other medical problems, I decided to “work my health insurance plan” to find a doctor and, in the process, take my own advice. Mind you, while Crohn’s Disease and my Gut are to me what Kryptonite is to Superman (if you have never heard of “Crohn’s Disease Man” you just aren’t reading enough comic books), my Eyes are nevertheless of vital importance to me. Moreover, the auto-immune aspects of Crohn’s Disease have been known to affect the Eye so it wasn’t like I was going to see a Podiatrist or a Psychic and could thus roll the dice. In that regard, I apologize to all the Psychics out there for comparing you to Podiatrists.

Tolerating “Quantity over Quality” from In-Network Doctors

More seriously, I have learned to merely “tolerate” my Insurance IN-Network Doctors based on my present experience with an Endocrinologist who has more satellite offices than he does office staff such that it takes 3 weeks to get a Prior Authorization for an MRI of my Pituitary Gland. I am STUNNED he calls himself a Doctor and not a Medical Businessman. I haven’t terminated our relationship yet because I’ve had a hard time finding another endocrinologist in my insurance plan who can see me within six (6) weeks and, anyway, at this point in our relationship he is merely accumulating test results and my Bookie could basically do that. However, I will change endocrinologists when interpreting said test results becomes of paramount concern and a long-term treatment strategy must be devised.

Since I am seemingly caught in this weekly vortex of needing to be treated by one medical specialty doctor after another, I don’t have the energy to take the appropriate consumer “stand” with each disappointing health care transaction I encounter. However, despite my medically dominated day-to-day life and the numerous disabling medical issues I must contend with, there was something so outrageous about my recent encounter with this Eye Doctor that I had to “fight back” if only to show this doctor that the BS he is pulling with other patients can’t be pulled with me (and shouldn’t be pulled with the other patients).

Do you “take,” or “participate in,” my Health Insurance Plan?

You see, I had to find an eye doctor who would not only evaluate my vision but also assess the various eye ailments I’ve experienced because of my chronic illness. In that regard, a trusted family member of mine recommended this particular eye doctor because he was very kind to her and had solved her then-pressing medical problem so I checked to see if he was in my health insurance plan. I was pleasantly surprised to see that he was IN FACT, an “In-Network” Physician Provider. I point out this distinction because patients get fooled all the time when they call a doctor and ask them if they, for example, “take Green Cross of Boston Health Insurance” and the $12 an hour receptionist says, “Sure, the doctor ‘participates’ in practically all health insurance plans” or “the doctor ‘accepts’ all health insurance plans.”

You may not realize it at the time but “magic words” are exchanged between patient and medical receptionist during such a conversation and medical practices have been profiting off of the resulting misunderstanding with the same ease of off-shore oil drilling companies obtaining licenses to drill for oil under President Bush’s administration. The medical receptionist technically said nothing wrong because saying the doctor “participates” or “accepts” all health insurance plans when asked if the medical practice “takes” a certain health insurance plan is like pulling into a gas station asking if they “take” the local town Entertainment Discount Card and expecting a great bargain if they do. The gas station guy would say they do “accept” the Entertainment Discount Card but the rub is the extent to which he “participates” in, or “accepts,” the local Entertainment Discount Card plan.

The Financial Ramifications of Healthcare “semantics”

For instance, the gas station guy might smile and take the Entertainment Discount Card Coupon but after you fill up your gas tank for $49.00 he will come back to the driver-side window and tell you the total is $44.00. “But I thought you ‘accepted’ the gas coupon from the Entertainment Discount Card?” you ask. Still smiling as if he’s a regular Saturday night dinner guest at your house, he says, “I do, and I deducted $5.00 off your total, so all you owe me for filling up your car with gas is $44.00.” That’s exactly what happens in healthcare when the words “participate” and “accept” are misunderstood. Moreover, medical practices exert zero effort to correct patients from relying upon these magic words. But we patients have no-one but ourselves to blame because the only phrase of any financial significance is “In-Network Provider” because then the most you can pay for an Office Visit is your “Insurance Co-Pay.” With my current insurance policy, that is $30.00 for an “Office Visit” and $50.00 to see a “Specialty Doctor;” however, I have yet to see an Office Visit which they classify as anything but an office visit with a “Specialty Doctor.”

Having been burned many times before by the aforementioned health insurance “take/participate/accept” semantic BS, I was legitimately impressed that my Health Insurance Plan had this particular Ophthalmologist in its Provider Network of Doctors given the rave reviews he had received from someone whose opinion I respected. Since my Co-Pay is $50.00 to see In-Network Specialty Doctors, I was going to get a full Eye Exam and Overall Consultation for no more than $50.00. Looking back on it, I should have realized that when something sounds too good to be true, it invariably always is. There are a few exceptions to this age-old axiom but you usually wind up marrying them and I have yet to be so lucky to meet the woman of my dreams. In any event, when I walked into this new Ophthalmologist’s office last Friday what I encountered SO DISTURBED ME that after the Office Visit I decided to ask for my money back.

How to be a Medical Patient Consumer

Rather than bore you with additional details as to why I felt so ripped off as both a Patient and a Consumer by this Ophthalmologist, I have pasted below the EXACT Fax I sent to him on the following Monday, which he responded to within one (1) hour by reversing the $50.00 Co-Pay charge to my American Express Card. In short, I felt like a patron at a trendy restaurant with a Server who starts walking away from me while I’m still ordering as if he knows how to complete my sentences and what I want for dinner that evening. The Server seems more interested in maximizing his tips by “turning the table over” rather than in ensuring that I have a pleasurable experience. In the restaurant setting, I can tolerate such behavior because I don’t have to jump through too many hoops to find the joint and after all, it’s common to have a “one-off” experience.

If I wind up having a bad consumer service experience, I’m also always aware of the “buyer-beware” credo and I can easily “complain” by never going there again. I can also tell all my friends about how rudely I was treated and I can even write a scathing Yelp Review or share my bad experience on some other social media platform. These common sense remedies notwithstanding, I think it is just as important to take the time to compliment a new restaurant or business via these same consumer tools when the experience is positive. We all seem to have more time to complain and protest to get our money back than we do to compliment or praise a business or service when it provides exactly what it advertises. That’s just human nature and when we spend our hard-earned money and in return get a bad experience we tend to be more “motivated” to do something about it even if that is to simply ease our minds. But I do try to keep my complaints and compliments in balance and I think my Yelp profile can attest to that.

But these consumer remedies are not as effective when it comes to our Health because there’s simply too much subjectivity involved with the healthcare transaction and the “time spent” vs. “proper treatment received” quotient doesn’t leave much room for a grave error or a disconnect. Accordingly, while an arrogant abrupt physician to some can simultaneously be touted as a highly skilled and confident physician to others, the time invested in developing a new doctor-patient relationship gone wrong can feel like the most squandered of wasted time.

“Quantity over Quality” In-Network Doctors with some Exceptions

Ironically, in the middle of writing this Post I went to see an In-Network Surgeon for a Consultation as I need rather serious surgery to repair Crohn’s Disease-related damage in my Intestine. It may have been the most thorough examination I’ve ever experienced as this doctor focused on me and my case until he and I were both satisfied that we had all of our questions answered. By agreeing to operate on me, he was telling me that my problem was now his problem and I left his office SO relieved. Perhaps it was the combination of the precise nature of his surgical specialty and the seriousness of my surgery which warranted such individualized treatment, but I have found the recent increase in Insurance In-Network Doctors clearly creating a “quantity over quality” atmosphere. I can only imagine this trendy restaurant-like atmosphere to be a byproduct of the unreasonable provider reimbursement amounts and the allotment of shorter and shorter patient time constraints placed upon them by both our overall healthcare system and by the rules of being an In-Network Provider; the Network of which many Provider Doctors are forced to join simply for cash-flow purposes.

“Turning over patients” seems to be the name of the game in these types of practices. It is quantity over quality; “LA” instead of New York City; Kathy Griffin over Louis C. K. The question then becomes: What to do about it? I decided to articulate my grips in a respectful letter to the aforementioned Ophthalmologist asking for my money back and in the process I hoped he “gets it” so that the quality of the medical services he renders to other patients in the future gets better. Below is that redacted copy of the fax I sent him [underlined and bold emphasis left in].

The Redacted Ophthalmologist Letter seeking Refund

As an experienced Patient, and a complicated one at that, I was deeply disappointed in the Ophthalmology medical services you provided to me on Friday, ————, and as I result I am reversing my $50.00 ——————– Insurance Co-Pay Charge with American Express (if charged; if not yet charged I am respectfully requesting that you do not do so) and I respectfully request that you mail to me my Medical Records you and your staff generated on ————-. My address is —————————————————————. Thank you for your anticipated cooperation.

For the sake of explaining my actions and for the purposes of hopefully preventing this from happening with other patients, set forth below are my specific Complaints. In summary, I just need my Doctors to be reasonably thorough and reasonably comprehensive given how pervasive my Crohn’s Disease has been and you clearly were not. But, it is nothing personal. Candidly, I think it is a byproduct of the ridiculous and unreasonable time constraints you are placed under by Health Insurance companies which in effect unfairly place your emphasis on “turning over patients” like waiters in a trendy restaurant instead of treating each patient with the time and focus warranted by each individual patient and case. Nevertheless, I need more attention focused on the health of my eyes given that my Crohn’s Disease has already had a significant effect on my eyes. In that regard, I must now see another Ophthalmologist for the same reasons I went to see you and therefore I would appreciate you not charging me for the ————————— Office Visit/Exam or not contesting my reversal of said charge when/if it appears on my American Express Card. Thank you for your anticipated cooperation.

The Specific Patient-Consumer Complaints

I completed your New Patient forms in reasonable detail explaining the Cataract Surgery, Eye Sores, Extreme Crohn’s Medication Side Effects and Dry Eye I have experienced as a result of my Crohn’s Disease yet you merely confirmed the Left Eye Cataract Surgery and told me I have a Cataract in my Right Eye but that I shouldn’t worry about it. That gave me no gauge whatsoever as to the status of that right eye Cataract considering that my Los Angeles, CA Cornea Specialist told me 3 years ago that I must watch that right eye CAREFULLY. You did not even inquire about the eye sores or the Dry Eye and both are often symptoms of Crohn’s Disease and in my case they were so EXTREME to the point where I had CUTS in my eye that were so painful I almost had to be hospitalized. As for the Dry Eye, I had some type of ducts inserted into each eye yet you did not inquire about Dry Eye AT ALL.
I spent more time with your cordial Vision Technician than I did with you and that concerned me given the complexities explained above and given my current exacerbating problems regarding Reading up-close. I was worried that my chronic illness might be somehow affecting my vision (as my Crohn’s is apparently active and wreaking havoc inside my Intestines as I am awaiting a surgical date to have FIVE (5) Strictureplasties performed on me) yet I was “run through the mill” that you have established at your practice and while that may be perfectly fine for normal patients it doesn’t work for me. I also asked this Vision Technician several questions which she had no answer for and I also had to remind her several times to check the prescription on my Sun Glasses as I was not sure when I had them made. She was very nice and professional but she went through my exam like she was completing a checklist fixing a car’s Transmission rather than treating ME as a Patient. I don’t blame her at all; I have no one other than you to blame because she should not be placed in a position to answer questions which necessitated answers from an Ophthalmologist.
When you gave me the eye exam and I complained that my right eye was VERY blurry from the dilation eye drops yet my left eye seemed fine, you said I shouldn’t worry that the vision you were demonstrating for me in that right eye wasn’t the best possible vision I could achieve with a prescription. To that end, I still don’t understand how you were able to almost perfect the vision in my left eye with the manipulation of the different lenses in that machine but never came anywhere close to providing me with decent vision in my right eye. Considering I have a small or “beginner” Cataract in that right eye, have experienced all of the above related to my Crohn’s Disease and what I set forth in the New Patient Forms, your answer to my repeated question about this was unsatisfactory.
I also told you after you were done examining me that I was having serious problems reading the newspaper and you told me that you were surprised by that statement based, I imagine, on the eye examination you had conducted. Then, in response to my statement and in an attempt to help me, you had me go back to the prescription “machine” and you held up a sign close to the machine for me to read to test my reading vision. However, your hand was not steady and the sign moved and that just added another variable to figuring out what my correct reading prescription is because I couldn’t focus on the answers to your questions regarding what was on the sign but you did not seem bothered by it. You then put the sign down and changed my reading glasses prescription. I asked how you knew what prescription to write and you simply answered: “I made your reading glasses much stronger.” ???? With all of the complexities that must go into figuring out the correct eye prescription, what does “much stronger” mean and how did you arrive at that exact prescription? Moreover, had I not insisted that you please make sure my reading vision was optimized; you would not have changed a thing.
I asked you about the right eye Cataract and again you gave me a “wishy-washy” answer by telling me “not to worry about it.” Given the almost 20 major surgeries and 200+ hospitalizations I have experienced due to my Crohn’s Disease, I must worry about it because what can go wrong with respect to my health, always seems to go wrong. This is all not even mentioning that I developed, and had surgery for, a Cataract in my Left Eye in July, 2007, when I was 44 years old and was told it was directly due to my Crohn’s Disease because I was too young to be developing a Cataract. I was also told at the time that I had what appeared to be a Cataract in the right eye but that it was too small to operate on – at that time.
Then you walked out of the Exam room leaving me on the chair and I thought you were either coming back in or having another vision technician come in as I still had questions regarding the prescription to my Sun Glasses. Then, after waiting a few awkward minutes in the exam room chair, I walked out of the exam room and asked someone to check my sunglasses. The Vision Technician who had conducted a variety of tests on me was kind enough to take them from me and she then checked them.
I also recall always having drops placed in my eye to reverse the dilation drops because my eyes are SO SENSITIVE to Dry Eye and whatnot but that was not done and I forgot to ask. As a result, I had trouble seeing clearly for at least FOUR (4) hours after I left your office.

Dr. ——–, I could go on and on but it is not my intention to be unreasonable or vindictive. The whole experience simply reeked of an office trained to “turn over” patients rather than to TREAT THEM and I cannot entrust my health and well-being to such a Doctor. That said, I am acutely aware of the harsh realities of our current healthcare system and I do sincerely understand the ridiculous reimbursement and time constraints you are up against but nevertheless I do hope you take this letter in the spirit in which it was written. That is, to explain my actions and to provide you with some feedback so that you can make some changes to provide a better quality of care to your future patients since you certainly seem like a smart doctor with the best of intentions. Additionally, I do not think it is fair that I should have to pay for my eye exam with you since I must now go to another eye doctor for the same thorough and comprehensive eye examination I was seeking.

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Posted in Assertive Patient, Doctor Patient Relationship, Doctor Ratings, Doctors, Empowered Patient, Health Insurance, Health Insurers, Informed Patients, Patient Consumers, Patients as Consumers, Physicians as Service Providers, The Empowered Patient

Tagged Chronic Illness, Crohn's Disease, Crohnie, Crohnies, Doctor, Doctors, Endocrinologist, Eye Care, Eye Doctor, Health Insurance, Health Insurance Companies, Health Insurers, Healthcare, In-Network Provider, Insurance Co-Pay, Medical Patient Consumer, Ophthalmologist, Ophthalmology, Patient Care, Patient Complaints, Patients, Physician, Physicians, Specialty Doctor

What to ask before your 1st Crohn’s Disease Surgery

Posted on May 3, 2012 | 6 Comments

The Power of Crohn’s Disease

As a 49 year-old battling Crohn’s Disease for almost 30 years, people always ask me two (2) things: 1. What is so unique about Crohn’s Disease which makes surgery such a last resort? 2. Why has it been necessary for you to be hospitalized over 200 times for treatment of Crohn’s Disease? The answers to these two (2) questions set up a foundation of knowledge that every Crohn’s patient should acquire so they are properly equipped to most effectively interact with their surgeon during that 1^st surgical consultation. But before I share advice about what to ask your surgeon before your 1^st Crohn’s Disease surgery, I think it is also important to understand the disease, its possible progression, its medications and its potential effects on your life. That’s why I’ve chosen to write this “advice article” from a story-teller perspective. After all, surgery is surgery but there’s nothing quite like Crohn’s Disease.

Experienced Crohn’s patients are not Doctors but for what we must go through with the disease, we might as well at least have some type of Honorary Medical Degree! To that end, Crohn’s Disease forces each of its patients to learn a great deal about his or her respective “type” and intensity of disease since Crohn’s can affect one person mildly yet another so severely that he or she can be disabled. There is no medical explanation for this wide and diverse range of brutality. Moreover, these mild vs. severe flare-ups and overall Crohn’s classifications can inexplicably go away over time or they can exacerbate. The auto-immune element of Crohn’s can also introduce other chronic diseases and conditions into the patient’s situation and these Crohn’s “related” medical problems can be more debilitating than the vice-like grip Crohn’s itself often has on the life of its patients.

When you also consider the life-threatening and life-style altering side effects of some Crohn’s Disease medications, the potential severity of the disease really comes into focus. Like many other Crohn’s patients, I have come to experience it as a disease which has a mind of its own whose main attributes are unpredictability and in-curability. How can a person plan a life around such an often pervasive disease which causes debilitating and painful flare-ups the timing of which are unpredictable? Oh, and the underlying disease is incurable? There are many more dangerous and debilitating diseases than Crohn’s Disease but few feast on a patient’s physical, mental, psychological, emotional, financial, professional, social and familial well-being as much as Crohn’s Disease.

A Correct Diagnosis of Crohn’s Disease

Assuming you are accurately diagnosed and manage to dodge the months or years of being misdiagnosed with people close to you thinking you are crazy for trying to associate together seemingly unrelated symptoms as if they are all a part of one horrific and existing disease (which they are, and the disease is called Crohn’s Disease), you’ve ultimately found “the” gastroenterologist who fits your needs, personality and lifestyle. During the first few years, under normal circumstances you would have likely been under medical treatment for a variety of Crohn’s symptoms that occur when your body’s immune system is ill-equipped to fight off inflammation. In fact, when posed with the task of fighting inflammation, your Crohn’s Disease somehow confuses your immune system and causes it to attack itself instead of the inflammatory intruder. This sounds like fodder for an old Jerry Lewis Comedy but the practical medical effects of this bizarre immune system malfunction make Crohn’s Disease potent and pervasive.

Despite the possible serious manifestations of Crohn’s, your gastroenterologist will start you off with the most conservative medical treatment and then gradually move you up that scale as your condition warrants. But as you know, your condition may forever stay at that very treatable level or it can get rather aggressive like mine and that’s when your doctor has to move to more “systemic” medications or eventually have you consult with a surgeon about surgical intervention.

Crohn’s Disease Recurs which tends to negate Surgery

In answering Question 1 above, it’s important to understand that Crohn’s Disease tends to “recur” in that, by way of example, having surgery to remove 4 inches of diseased small bowl intestine might solve your pressing medical problem but the mere act of surgical intervention could start the need for continued removals or surgical repair of additional small parts of small bowel intestine. The problem with that is there is only approximately 23 feet of small bowel in the human body and your small bowel is a very important piece of human equipment. Personally, I had a small bowel resection surgery which fixed an extremely painful then-pressing Crohn’s flare-up only to have Crohn’s come back or “recur” and affect the same area of my bowel a mere two (2) months later. After almost another two (2) months of aggressive medical treatment to try and avoid another bowel surgery, this Recurrence of Crohn’s Disease in my small intestine required another surgery to remove more of my small bowel only one hundred twenty (120) days from the date of the prior small bowel surgery. Additionally, and as referred to above, the 23 feet of small bowel serves several different important bodily functions such as digestion and absorption of nutrients so each time a portion of the small bowel is surgically removed or altered, the patient will have to make significant lifestyle adjustments to remain healthy and appear normal. There is also the reality that every surgery creates scar tissue or adhesions and these natural byproducts of surgery can, by themselves, cause Full or Partial Bowel Obstructions necessitating even more surgery. This additional surgery creates more scar tissue to the point where a viscous cycle forms such that the following credo was created: “more surgery begets more surgery.” In summary, these recurrence issues are the reasons surgeons don’t like to perform surgery to fix or repair Crohn’s Disease damaged intestine.

Crohn’s Disease Medications

Prior to having to consult with a surgeon, the traditional Crohn’s Disease treatments and medications with which you might be familiar generally fall within the different levels or degrees of the disease and are as follows:

Anti-inflammation medications: (Asacol, Dipentum, and Pentasa);

Cortisone or Steroids: (Prednisone, Budesonide);

Immune system suppressors: (6-mercaptopurine [“6MP”], azathioprine, Methotrexate, and Imuran);

Biologics: (These are injectable “Anti-TNF” Agent medications such as Remicade, Humira and Cimzia which have been proven to be very effective pursuant to current Crohn’s research. More specifically, the most current research indicates that the injection of these drugs binds them to “TNF” substances and that will block the body’s abnormal inflammation response. Some studies also suggest that the usage of biologics may enhance the effectiveness of immuno-suppressive medications. While I can attest to the almost dramatic positive effects of some biologics, I can also attest to the fact that the use of biologics in Crohn’s Disease can have VERY serious long term side effects many of which are only now first coming to the attention of medical practitioners. It’s one thing to be aware of these terrible consequences due to the small print [or fast spoken] legal disclaimers on the packaging inserts [or in TV/Radio commercials] of the biologics but it’s an entirely different reality when these patients taking biologics start showing up in emergency rooms around the world with life-threatening Lung Disorders and Fungal Infections. Almost forget, these biologic drugs tend to also be very expensive.)

Antibiotics: Antibiotics are used for a variety of purposes in Crohn’s Disease because in some patients doctors believe there is a bacterial component somehow involved. They are also used to treat bacterial overgrowth in the small intestine caused by stricture, fistulas, or surgery. Accordingly, your doctor may prescribe one or more of the following antibiotics: ampicillin, sulfonamide, cephalosporin, tetracycline, metronidazole [i.e., Flagyl]. (Personal Note: For whatever reason, Flagyl has proven to be VERY effective for me during certain types of Crohn’s flare-ups. In such instances, I typically take the antibiotic for 5-10 days and then get off of it. I mention this because even the use of antibiotics in Crohn’s patients can have serious complications such as the prolonged use of Flagyl causing Pancreatitis. Again, I am NOT a Doctor but I have been in contact with many Crohn’s patients who have contracted Pancreatitis after significant use of Flagyl. Amazingly, I have thus far avoided that nightmare.)

Anti-Diarrheal Medications & Pain Medications: These are drugs used routinely by Crohn’s patients for lifestyle purposes because no one wants to spend their days in pain or stuck in a bathroom. Some patients even see specialty “Pain Management Physicians” to specifically treat their Crohn’s pain. Whatever the reason, you should always tell your gastroenterologist what medications you are taking because this information will help him or her in devising your overall medical treatment and it will also be an important piece of information your surgeon will want to know about.

Why so many Crohn’s Hospitalizations?

In answering Question 2 above, I tell people my doctors are always doing whatever is necessary to keep me off the operating table for the “disease recurrence” reasons described above. The practical result in the 1980s and 1990s were increased hospitalizations although due to subsequent changes in healthcare and in the health insurance industry, I’m not so sure I would have been hospitalized as often or for as many days each time I was hospitalized if I got as many of the same type of Crohn’s flare-ups now in 2012. In any event, since there are a variety of effective Crohn’s Disease medications, many of which I outlined above, I was thus often hospitalized to take these medications intravenously or in combinations/strengths which are not available outside the hospital. In that regard, my gastroenterologist preferred seeing me in the hospital, sometimes for 20 days, if necessary, in an attempt to get me through a flare-up with the administration of medications rather than through surgical intervention and the likelihood of losing more of my intestines. I’m not so sure health insurance companies would now agree with this safe and conservative approach since they like to “turn over” hospital beds like waiters turning over tables in a trendy restaurant to maximize their tip income. In any event, doctors still follow the same conservative medication principles but more of the patient “response time” is done at the patient’s home due to the increased cost of being hospitalized. This harsh reality of a Crohn’s Disease flare-up adds to the feelings of loneliness and isolation which many Crohn’s patients unfortunately experience.

Finding the RIGHT Crohn’s Surgeon FOR YOU

I have gone through this short summary of Crohn’s Disease treatments and medications because I think a 1^st time surgical Crohn’s patient should be familiar with the possible roads not taken and with all that is involved in leading up to Crohn’s surgery. The 1^st time surgical patient should also know that when they consult with a surgeon and their gastroenterologist thinks they need surgery, they are likely going to receive a recommendation of surgery since that is what surgeons do! Of course, there are numerous exceptions to this but my point is that you want to make sure you’ve exhausted all possible medical treatments such that the only appropriate answer to your Crohn’s problem IS surgery. If you’ve arrived at that point, then your only responsibility is to pick the surgeon who is right FOR YOU. This means consideration of skill level, personality, understanding of your lifestyle and of the quality of life you are seeking by having the surgery. You also need to go through a battery of diagnostic tests prior to the surgical consultation and your gastroenterologist will naturally order these tests in trying to help diagnose you. It has been my experience that surgeons like to look at the actual Films from a CT Enterography and a GI Series. Depending upon your medical/financial and health insurance situations, you may have to undergo additional testing. Regardless, try to always obtain the original Films from each test so that the surgeon you ultimately choose can use them to successfully operate on you.

The Crohn’s Disease Surgeon – What to Expect

It’s difficult to recommend questions to ask a surgeon in a Crohn’s Disease case because with few exceptions every surgeon I’ve ever encountered has been SO confident and thorough that they leave little room for elaboration. Sometimes, however, this “confidence” can be construed as arrogance but I’ve also come to learn that with supreme surgical skills in Crohn’s cases comes a certain “self-assuredness” which can be off-putting if not expected. For example, these surgeons bring up money and the cost of the surgery earlier in the doctor-patient consultation than in any other medical situation I’ve ever encountered. Again, there’s nothing wrong with making sure you will be paid promptly for providing your services but such “directness” during a medical consultation may be a turnoff to you. If that is the case, please at least take away from the encounter that Crohn’s surgery is SERIOUS BUSINESS. The surgeon is being asked to basically take apart your insides and then put them back together sans the Crohn’s problems. If, even with that understanding, you don’t feel comfortable with that particular surgeon, look elsewhere but don’t forget you will encounter some aspect of this self-assuredness in almost every surgical consultation.

The Crohn’s Disease Surgeon – What to Ask

Prior to actually meeting the surgeon for the 1^st time, you should write out your questions so that you are organized and respectful of his or her time. You should also have a written list of all the medications you are taking. Every surgeon will appreciate you doing this. However, LISTEN to them first and even take notes before you ask your pointed questions as they are accustomed to the nervousness and anxiety of 1^st time patients and thus they are usually overly comprehensive in their initial explanation of the surgery. Besides the obvious questions related to the surgery such as the possibility of doing your procedure via laparoscopic surgery (i.e., instead of cutting your entire torso open), the estimated recovery time and the amount of pain involved, you should inquire about post-operative care and about the subsequent limitations in your work and physical activities and when you can start instituting your dietary preferences. Ask about the most likely problems which will be encountered with your particular surgery and what the ramifications would be to you if such problems occurred. Getting back to the pain issue, I would ask about the availability of a Pain Management Team at the Hospital if you are overly sensitive to post-operative pain because Crohn’s surgery can be among the most painful surgeries performed. (For example, a day or two after my 1st Crohn’s surgery, a kind nurse gave me a pillow on which she had written what I thought were “girly” drawings and she told me it was my “Cough Pillow.” I thanked her for her thoughtfulness but put the Cough Pillow as far away from me as possible in case one of my macho buddies stopped by to see me and found me cuddled up asleep with this girly pillow. Well, after the first inclination to cough hit me and I tried to cough but nearly passed out from the pain, that Cough Pillow and its girly drawings NEVER left my side and I didn’t care who saw me use it!)

Always keep in mind that this very confident surgeon may have to attend to you when you’ve had an unsuccessful surgery and he or she will need to “problem-solve” to get you better. Confidence is great but empathy and adaptability are also important. Be realistic with what you expect from the surgery and make sure you are both “on the same page” with your expectations and the surgeon’s capabilities/intentions. Understand the various costs involved with the surgery such as the Surgeon, Anesthesia, Hospital, Laboratory, etc. The Surgeon will not be able to break down the other costs but the office staff will probably know from whom you will be receiving medical bills. Lastly, if this is the surgeon you choose but the price is too high, ask if there is a payment plan available. It may feel strange negotiating over life or life-style saving surgery but you must and that’s why I think it is also always best to bring along someone (e.g., your mother, brother, sister, best friend, etc.,) who will respectfully act as your Patient Advocate of sorts because you will certainly need one when you are incapacitated from the surgery. More to the point, it is always easier having a “buffer” to ask about or respectfully demand those difficult items or issues which you don’t want to get into a heated conversation about with the surgeon who will be presiding over you at your most vulnerable condition. Besides offering you moral support, that Patient Advocate can more easily objectify the “transaction” just as the “self-assured” surgeon can since he or she has presumably done this hundreds or thousands of times before.

Now, you are ready for surgery. Good luck.

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Posted in 1st Crohn's Disease Surgery, Anti-TNF Agents, Assertive Patient, Auto-Immune Disease, Crohn's, Crohn's Disease, Doctor Patient Relationship, The Empowered Patient

Tagged biologics, Cimzia, Cough Pillow, Crohn's, Crohn's Disease, Crohn's Disease Medications, Crohnie, Crohnies, CT Enterography, Doctors, Flagyl, Fungal Infections, GI Series, Hospitalizations, Humira, IBD, immune system, Inflammatory Bowel Disease, Michael A. Weiss, Pain, Patient Advocate, Patients, Physicians, Prednisone, Recurrence, Recurs, Remicade, Resection Surgery, Small Bowel, Small Bowel Resection, Surgeon, Surgeries, surgical consultation

EHRs, Crohn’s Disease & Chronic Illness – Viewer Feedback #1

Posted on March 11, 2012 | Leave a comment

EHRs, Crohn’s Disease & Chronic Illness – Viewer Feedback #1

This “Medical Minute” Episode is the First “Viewer Feedback” show. In it, I share what I have learned from the many Comments my Videos elicit from their diverse audience. In Viewer Feedback Episode #1, I share Physician thoughts on Electronic Health Records, Viewer comments on Raising Awareness of Crohn’s Disease and the thought-provoking Tweet of a chronically ill person.

For more detailed tips, analysis and funny Patient “war stories,” please go to Amazon.com (or BN.com) and purchase my critically-acclaimed book, “Confessions of a Professional Hospital Patient.” Thank you.

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Posted in "Confessions of a Professional Hospital Patient", Chronic Illness, Crohn's, Crohn's Disease, Crohn's Disease Mainstream Awareness, Crohnie, Crohnies, Electronic Health Records, Electronic Medical Records, Managing Chronic Illness, Marketing Crohn's Disease, Mental Aspects of Chronic Illness

Tagged "Confessions of a Professional Hospital Patient", Chronic Illness, Coping with Chronic Illness, Crohn's Disease, Crohnie, Crohnies, Doctors, EHRs, Electronic Health Records, electronic medical records, EMRs, IBD, isolation, Loneliness, Mental aspects of Chronic Illness, Patients, Physicians, Raising Awareness of Crohn's Disease, Twitter

Doctors passing onto Patients the cost of adopting EHR systems

Posted on February 24, 2012 | Leave a comment

For so many years, the business of healthcare was managed pursuant to the handwritten notes of medical professionals. However, the advent of technology and recent legislation has made the adoption of “Electronic Health Records” or “EHRs” mandatory. It is my contention that medical practices adopting EHR programs are simply a “cost of doing business.” So, why are some Doctors sending out letters to their patients asking them to choose an EHR “plan” and pay accordingly? Also, is it fair for Doctors to pass on the cost of adopting Electronic Health Records to their patients when all they are really doing is bringing their medical practices into the 21^st Century Age of Technology? This 2-3-minute Video examines these questions from my personal Patient experience.

“The Medical Minute” (“TMM”) is a Continuing Series of Short Videos produced by veteran Crohn’s Disease Patient, Michael A. Weiss, which highlight informative aspects of chronic illness, healthcare and healthcare reform. Mr. Weiss’ TMM Videos can also be found on the following YouTube Channels: The Medical Minute, Health Care Reality and Pro Patient TV.

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Posted in Assertive Patient, Doctor Patient Relationship, EHRs, Electronic Health Records, Electronic Medical Records, Empowered Patient, EMRs, Informed Patients, Patient Consumers

Tagged Allscripts, Aprima, ChartLogic EMR, Cost of adopting EHRs, Doctors, eClincialWorks, ehr technology, EHRs, Electronic Health Records, electronic medical records, EMRs, health care marketing, hospital marketing, MediTouch, Patients, physician practice, Physicians, practice of medicine

“The Medical Minute” – Understanding the often Long Wait at the Doctor’s Office

Posted on February 18, 2012 | 1 Comment

Have you ever made an appointment with a Doctor and he or she sees you on the exact time of your appointment? Probably Not. This 1-Minute Video explains why that often happens and it has more to do with being a Considerate Patient than anything else.

This Video is one in a Continuing Series of SHORT VIDEOS (i.e., in and around 1-2 minutes) which provides helpful insights and information regarding Healthcare, Chronic Illness and the Practice of Medicine.

For more detailed tips, analysis and funny “war stories,” about navigating our healthcare system, please go to Amazon.com (or BN.com) and purchase Michael’s critically-acclaimed book, “Confessions of a Professional Hospital Patient.”

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Posted in Chronic Illness, Doctor Patient Relationship, Doctors, Empowered Patient, Patients as Consumers, Physicians, The Doctor Appointment, The Medical Minute

Tagged "Confessions of a Professional Hospital Patient", "doctor visit", "medical emergency", Chronic Illness, Chronie, Crohn's Disease, Crohnies, Doctors, Health Insurance Companies, Healthcare, Michael A. Weiss, Patient, Patients, Physicians, sick, spoonie, spoonies, The Medical Minute

Tag Archives: Doctors

Dr. Greenbaum, Rheumatologist – WORST DOC of the YEAR!!!!

Hospitals “Feel Like Prison”

In-Network Doctors – Quantity over Quality

What to ask before your 1st Crohn’s Disease Surgery

EHRs, Crohn’s Disease & Chronic Illness – Viewer Feedback #1

Doctors passing onto Patients the cost of adopting EHR systems

“The Medical Minute” – Understanding the often Long Wait at the Doctor’s Office

“Confessions of A Professional Hospital Patient”

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