Archive for the ‘Doctor-Patient Communication’ Category

image

Would love to credit this drawing – but it was a repost in a FB forum – would live to find out the brilliant would that drew this to give proper credit….if anyone knows, please let me know.

Why and I returning to my blog??? Stay tuned for these posts that will explain…

I had a huge disaster over the last few weeks that has totally given a new definition and meaning to the title of my my blog, “MisdiagnosedMe.”
I have had to file complaints about violations of my patient rights (hello New England Baptist Hospital, UMASS Memorial…)….some pretty crappy things have happened to me and I can no longer just roll over, whine a bit about it on Facebook and try to forget it.. Misinformation purposely placed in a medical record is a serious violation of patient rights and can effect the health of the patient – and this info gets transferred fast throughout the health care systems…mine went to 5 different organizations in 4 days! Think of the damage that caould cause. Think of the damage it DID cause…we can no longer keep quiet about these things. Time to stop whining in forums and take real action.
Doctors are writing parody songs about people that are on pain meds for chronic illnesses – they have officially reached the bottom of the barrel of disparaging patients. This has to be shared. How is this OK?
I had a considerable amount of time after a recent serious surgery that let me examine the forum-universe of many chronic illnesses. They are all alike. All claim symptoms belong to them and their zebra illness – how is this possible when all these symptoms are part of X, or is it Z, or is it Q? I have done a brief sociological analysis of this and may have a answer or two.
I want to explore the connections between symptoms of EDS – symptoms that overlap with dysautonomia, autoimmune disorders, skin disorders, etc. etc. I would like to discern if ther is a connection – perhaps we all have just ONE zebra illness, not 4. I am hoping that my analysis (don’t with the help of anonymous survey programs) may Help illuminate this? Maybe even get someone’s attention?
And, most of all I want to hone my writing skills and make use of my experience and education, so perhaps someone out there with some “brand recognition” will notice me and recognize what I have to offer the chronic illness community. Its seems as if the harder and faster I dance, the less I am am noticed and/or heard.
Dammit. This time, I am going to be heard. Even if I have to write my own parody song about doctors that enjoy disparaging their patients, nurses that mock and then abandon their patients as they are stuck on a commode hours after a a major surgery, and hospitalists a that make up new diagnoses to include on your chart, disrespect all prior doctors’ and diagnoses and then make jokes about it right outside the door of the patients room. I promise it will be catchy.

Comments?

Advertisements

Abandoned...like a polar bear on an ice floe

This is me.

I’ve literally been abandoned by my last remaining health care providers.

This is exactly how I feel as another boot strikes the edge of my ice floe. I float out farther into the icy waters, towards a slow and certain demise.

Each of those boots belong to a health care provider – a staff member of a hospital – even a “Patient Advocate” at a world-famous hospital in Boston. Names will follow. I will not go silently into that good night. They will be decloaked. Stay tuned.

Who put me on the floe?  I was forced there by the medical “professionals” that refuse to be proactive. They can’t be bothered to pick up a phone and call a colleague to see if they can help me or even ask, perhaps, if they know someone who might.

They can’t be bothered to do a simple internet search to find out how to treat someone with my rare and complex conditions.

(I’ll even tell them where to look…Medscape, Mayo Clinic, NCBI, Vanderbilt University, Google Scholar.)

It takes seconds.

If I do that, I will be labeled and ostracized (remember the “Seinfeld” episode where that happened to Elaine Bennis?) and my fade-out into black be hastened by their turned backs.

They forget I’m intelligent. They forget I have medical background and medical training and decades of experience advocating for myself and my mother.

[How tragically sad it is when I think about how poorly she was treated. I am being treated just like she was, so she ended her suffering. She too was shoved onto an ice floe. And suffered for 9 years despite of everything i tried to do to help get her some “care.”]

These so-called experts don’t and won’t even pay attention to any of the recent FDA approvals for treatments that could help me.

They won’t pick up the phone and reach out to specialists in the area to dee if they are interested in helping me.

They mindlessly throw out referrals to random places that I have already been (they don’t bother to read my record – to learn about ME), They tell me to “learn to meditate” or “do yoga.”

I have. I did. I am unable to do so.

Then, they insult my counselor. They tell me to talk to her – or that I need to find a new one.

Read my file. (Oh no – that would take time! Doctors are far too important and busy to read a patient’s file. “Only 5 minutes” – “only 2 questions” – “what ONE condition do I want to talk about today?”

Learn about my medical conditions. Read my file. Care about me. Please. Someone just CARE.

Don’t treat me as if don’t matter, as if I am a waste product – isn’t the first line of that all important oath that you take, “First, do no harm?”

Well, your acts and omissions ARE doing harm. Wake up. Pay attention. Realize what you are doing.

Every time your shove me further out into the icy waters, away from you so you won’t have to deal with me, you hurt me. You hurt my husband.  You hurt human beings.

As in the excellent movie, “Gattaca,” I am reduced to the status of being an “in-valid.” One that is not worth the time to help; to waste resources on; to listen to; to treat. A lesser part of society. Disposable.

Shove my floe again. Go ahead. Perhaps you will get lucky and YOU will be the one to cause me to wither and die sooner and the you will not have to be bothered with another patients like me. You can spend your time treating sniffles and GERD and Type 2 Diabetics. Tell them to meditate their problems away and be mindful to help their conditions improve.

But one day, your inattention to patients like me will catch up to you. I promise.

I intend to be on that list of those that YOU ignored and let languish on our ice floes.

Any talents and contributions I had the ability to make to the world will vanish as my floe heads farther out to the horizon – out of sight, out of mind. Good riddance.

I will expose you for your acts and omissions –  that will be my last act. That will be my legacy.

TOO harsh?  Well, that is too bad. This is how I feel.

I have been kicked out of the human race, shoved out into the cold, icy world alone to slowly die. All the boots that have shoved my ice floe farther into the icy waters – my former PCPs, my PCP’s practice, my former orthopaedic surgeon, my anesthesiologist, my former autoimmune doctor, my former cardiologist – all have turned their backs on me and returned to their warm and spacious mansions and forgotten about me. I am just an insignificant blip in the world. After all, there are 7 billion others (and counting – God help us…) Why care about just one?  Especially another one over 50. The world belongs to GenX and the Millenials. Those of us that are Boomers, well, we are just wasting the resources that should be reserved for THEM. the sooner we perish, the better.

I am disposable and useless.

At no time in my life have I felt this hopeless and alone.

I have been forced to return to scouring the web to find any information about my chronic conditions and any doctors that may be interested in seeing a 51 yr old with 4 chronic issues and multiple drug resistance genes. No one is interested. Not a single doctor in the Boston area.

You would think I live in Antarctica. No. I live in Boston. Great medical care?  Cutting edge medical care? Bullshit. Not when I actually have to explain to a physician what an :Autonomic Nervous System dysfunction is, and I watch them blink-blink-blink with wide doe-like eyes during my explanation. Are they even listening to me? Or are they just thinking about buying another Berkin bag or the color of their next Bentley.

Angry, arrogant doctors not interested in listening to a patient with tangible and complex conditions? Yes. Boston is their Mecca.  Don’t believe the hype. Listen to the patients that suffer because of their omissions and arrogance.

I am a compliant patient  – but there reaches a point at which it should be (SHOULD be) apparent these “conservative” (seems to be the latest buzz word) treatments aren’t working. I think 17 years should be good enough. No matter how many times I repeat these “conservative” treatments, costing me thousands of dollars, I get no better. In fact, I often get worse. . But that doesn’t matter. The quicker  I get out of their office – out of their sight – the doctors feel as if they can justify their actions – they have done their job. (Yes, I see you looking at the clock and glancing at your watch every few moments. Thanks for the disrespect. If you would take the time to read my file, I wouldn’t have tor repeat myself very single time I see you. If you would communicate with specialists before you refer me, I wouldn’t be wasting their time, boring them with a life story they don’t want to hear.) HOW RUDE.

Thank you, dear physicians,  for hastening the arrival of another cadaver for the next entitled overachiever to pick apart and insult in their gross anatomy classes. 

 

Here we go again – something that links directly to doctor-patient communication, and doctors attitudes about their hard-to-diagnose patients impacts us in ways they never imagine. Perhaps the health community should rethink their approach to patients like us…and maybe then we won’t have the issues that this blog by Michelle of “Living With Bob” discusses.

If you have a chronic, but invisible illness, you may have noticed that there lacks (for most zebras) the rally and support experienced by those with more visible, well-known conditions.

Friends and family members makes passive-aggressive comments about your constant “issues.” Or, they stop including you in their lives, period.

Michelle, wrote an excellent post about this yesterday.
Please read it here

Regular readers of my blog will know this is something I’ve had to endure for several years now.

What baffles me is how ignorant the doctors are…you present with several bizarre, subjective (not objective!!) and tangible conditions, a history of hospitalizations, surgeries….yadda yadda yadda…and STILL they question you, almost implying you are imagining all the problems you have.
The day I can will my blood tests to be abnormal (as they are) is the day I’ll be Queen.

My support comes mostly from strangers I’ve only “met” through the interwebs – others just like me, with exactly the same conditions – or others that are wonderfully empathetic. But no one IRL.

So, what has your experience been?

Have you been abandoned by friend and family?
Do doctors constant question you about “really” being unable to work?

YMMV – I’d still love to hear your about experiences.

To keep up-to-date on the subject in the medical field in which I have an interest, personal or professional, I subscribe to Medscape updates. I strongly encourage every ePatient or person that advocates for themselves or another should do the same, IMHO. It’s free and very worthwhile.

A shocking topic came through today and I HAVE to share it with everyone I possibly can.

Anyone that has been dismissed, treated in a less than human manner or completely ignored by a doctor they are looking to for help may second-guess their initial feeling: “Why does that doc hate me so much?”

You discuss it with your spouse, your friends, your fellow “zebras.”

Most tell you, no, doctors don’t hate their patients-s/he must have been having a bad day…or..YOU are reading too much into the interaction.

Read the Medscape article  HERE:

It is titled, “Medscape Business of Medicine Top Complaints Posted on Doc-Rating Websites,” by Shelly Reese.

Then, please read the response from a doctor to the article, a Dr. Barbara Lawrence, copied this directly from the plethora of comments, about 25% of them similar in tone (OMG – these are the people we are trusting with  our LIVES…) below:

“This reminds me of a large, complex doctor evaluation done by the Feds on Medicare patients. After evaluating multiple categories it turned out what seniors valued most highly in selecting a doctor/practice was the number of parking spaces and the waiting room appearance.

I don’t mind patients being sensitive to my bedside manner, my staff’s courtesy or follow-up phone calls. But really , I’m not in the business of customer service because I’m a medical professional. I can’t guarantee that patients will be seen on time due to the unpredictability of what comes through the door.

I could care less if the patient thinks they were correctly diagnosed or treated because we aren’t peers in internal medicine. Just because Readers Digest says being tired is a sign of lupus doesn’t mean you have it.

Patients may want to be co-partners in their care but they suffer from the extreme disadvantages of being poorly informed/misinformed, anxiety-driven, making judgments based on anecdotal information or TV ads, and no long term clinical practice experience.

That’s not to say their ideas have never been right. Sometimes they are spot on. But most often they come in with fixed foolish ideas planted by Connie Chung or, God help us, the internet.

Such “customer service” surveys should confine themselves to the patients’ area of expertise, and not the esoteric and complex art/science of medicine. experience.

That’s not to say their ideas have never been right. Sometimes they are spot on. But most often they come in with fixed foolish ideas planted by Connie Chung or, God help us, the internet.

Such “customer service” surveys should confine themselves to the patients’ area of expertise, and not the esoteric and complex art/science of medicine.”

(Emphasis added)

So, how dies THAT make you feel??

Vindicated – you are not crazy, overreacting, etc….?

Mad as hell?

Disgusted?

Do you feel sad for her patients?

Do you wonder how many of them were misdiagnosed, ignored, or treated harshly by her in some way?

I REALLY would love to hear your reactions!

My opinion:

A doctor-patient relationship should be one of mutual respect. If a doctor wants the respect and admiration of patients, treat them likewise. And for all concerned, they should stay abreast of the latest medical advances and studies in their specialty.

I wrote a lengthy reply to her nastiness , but I won’t include it here unless my readers ask. (I did say this in support of all us zebras: “It will confirm what all of us hard-to-diagnose patients have experienced- that docs with hatred towards us DO exist.

How sad.”

(Gee, I wonder how Connie Chung feels about being called out in this? Yikes.)

Comes from THIS article....

Graphic comes from THIS article...what a coincidence!

I had my genome sequenced primarily for health reasons in late 2013.
Not only did I get some great information that confirmed what I already knew and informed me of my relative risks for other health conditions, based on my own genetic ancestry, I learned that I am 44% Ashkenazi, an important category of people who are prone to medical oddities and have been studied in-depth for this reason. (This proves that you can’t believe everything Mom tells you sometimes..I was supposedly Italian and Scottish/English. Whoops.)

I chose to have my testing done by 23andme, primarily because of their reputation, their ongoing independent research into many genetic issues, and the fact that they will continue to update your results for ten (10) years based upon any research. There were many choices available and many levels of cost. It is very disheartening to have had the FDA suspend the medical genetic testing portion of their operation for what I personally believe to be political and capitalistic – they are not getting any money from the testing, nor is any income being generated for the FDA’s strongest lobbying groups. But, I do not wish to discuss the politics of the FDA here. Unaligned DNA sequences

Using my genetic raw data, I used several online services to re-analyze the results I had received from 23andme. Many of these databases address or define particular issues that 23andme chooses not to tell their customers. Perhaps this is due to space limitations, or the mere fact they don’t want to overwhelm lay persons with information that may not make much sense to them. I found that Promethease was the most comprehensive analysis tool available. (If you choose NOT to download the analysis tool, the reports (yes plural) will cost you $5. I downloaded the program so I did not have to pay for my information).

If you are a regular reader of my blog, you know that I have a lot of uncommon conditions, and that I have been misdiagnosed and/or dismissed by MANy physicians over the past 30 years. I have had all sorts of strange and “rarely reported” side effects to many medications. Now, thanks to 23andme and Promethease, and my subsequent research (jump-started by the links in the Promethease report), I now know WHY.

So, WHY?

My results show a multitude of genetic mutations in one of the genes known as the “multi-drug resistance”  (MDR) genes –  ABCB1 (“a gene that is the member of the superfamily of ATP-binding cassette (ABC) transporters. ABC proteins transport various molecules across extra- and intra-cellular membranes. ABC genes are divided into seven distinct subfamilies (ABC1, MDR/TAP, MRP, ALD, OABP, GCN20, White). This protein is a member of the MDR/TAP subfamily. Members of the MDR/TAP subfamily are involved in multi-drug resistance. The protein encoded by this gene is an ATP-dependent drug efflux pump for xenobiotic compounds with broad substrate specificity. It is responsible for decreased drug accumulation in multidrug-resistant cells and often mediates the development of resistance to anticancer drugs. This protein also functions as a transporter in the blood-brain barrier.”   http://ghr.nlm.nih.gov/gene/ABCB1.)

This information coincides with the strange side effects and non-response issues I have had for decades with certain drugs. It is welcome confirmation that something is DEFINITELY different about me…it is vindication….documentary evidence…and proof of my own hypothesis (bolstered by the occasional physician) that “something wasn’t right with me” since I was 12 yrs old.  Even better and more important – it is based on HARD science – using my own genome!!! Not just supposition based on some papers or articles I heard about on Dr. Oz or WebMD, or anecdotal ramblings I try to get my doctors to “hear.”

I recently had a serious adverse drug event that could have been prevented had I known about my ABCB1 mutations before I started the medication. When I informed my doctor, the response I received was a copy of a 3 yr old opinion paper written by a “for doctors-only” research service dismissing most genetic testing by commercial entities as inaccurate and unreliable – despite the fact that these companies use the EXACT SAME proprietary, science-industry-produced tools and assays as any hospital, medical lab or university researcher would use. The article referred to genetic testing initiated by patients as part of the “personalized medicine” fad and gave strong advice to their target audience NOT to rely on any of the results. (Unfortunately, I do not have access to the service that publishes the article, therefore I cannot give you a link to it. However, if you contact me, I can provide you with a PDF.)

While I agree that testing in the PAST was if-fy, based on which lab was utilized, I vehemently disagree with this article’s continued dissemination to physicians based simply on the harm that it could cause to patients.

MDR mutations have HUGE implications in drug metabolism. If drugs that do not cross tissue barriers due to the lack of proteins in a person’s body that are supposed to carry drugs across membranes which they need to cross to work, they can accumulate in organs and body tissues and cause problems. I’ve had that happen.

Since I received the 2011 article from my doctor putting-down of “personalized testing platforms” such as 23andme, I have done some research and found MANY online resources that re-analyze the results of the 23andme testing (or DNA raw data from anywhere) are now available on the internet. I imagine this was in response to the persistent questioning of results by healthcare professionals.

Also, it should be noted that as inferred in the anti- personalized medicine article, 23andme doesn’t use their own geneotyping materials, but in fact uses commercially available arrays – just like the “real doctors” use! They state this clearly in their response to the FDA’s accusations about a month ago. I count at no less, 25 commercially available microarray cards that are manufactured for the purpose of determine multi-drug resistance available (just an example from ONE company), then it must be a lot more standardized than the author of the article is aware.

So, why did I mention DOGS in the title of his post?

Check out the link from this pic!

Check out the link for this pic! You can’t escape the uses of DNA!!

Turns out that MDR testing for purebreds is a common thing, as is evidenced by the multitude of tests available  – this is one company offers MANY. Just Google “canine ABCB1 testing” for a plethora of research articles on canine testing, and companies that specialize in such testing. (Perhaps I should go see a vet….)

I now fear seeing any more specialists here in Boston, where microspecialites seem to be norm at these training hospitals. I fear seeing a “personalized medicine” hater, or someone who despises people like me – ePatients that have the knowledge and ability to research issues on our own, similar to a certain specialist I saw last year that was agitated that I had possession of my test reports and medical information. Gee, if he know I had my genome sequenced and had all this information about my DNA – he would blow a gasket!!

So, why don’t I see a geneticist, you may be wondering…My insurance company will not pay for me to see a general geneticist – a cancer geneticist – yes – in fact, “strongly recommended” for people with my breast cancer family history; or, a cardiac geneticist – sure, no problem! The insurance company’s policy conveys that it doesn’t think that any other genetic abnormalities are important enough to explore to improve or save their patients’ lives, or even save them money in finding a treatment for their disorders.

A multitude of papers address this topic (not “personalized medicine” – but ABCB1 and other P-gp mutations) – in detail – be it for cancer drugs or antidepressants. Most often, it is applied in cancer cases, as certain cancers show affinity/resistance for one drug or another, based on P-gp status.

The man who wrote the most cited paper regarding the specific SNPs responsible for genetic-based responsiveness to several different antidepressants is Manfred Ur, MD at the Max Planck Institute of Psychiatry. He has been researching and documenting these polymorphisms in well-respected peer-reviewed journals since 2000. His webpage is a great place to start your research.

Here are a few of the most informative research papers I have found on the topic of ABCB1 mutations. Don’t forget to check out the references at the end of the article – they are a treasure-trove of additional information, and may lead you to exactly what you are looking for, if the referencing paper didn’t hit home for you.

ABCB1 – Genetics Home Reference

Great Tutorials about Pharamcogenomics

Polymorphisms in the Drug Transporter Gene Predicts Antidepressant Response

The ABCB1 Gene and Antidepressant Response

Ethnicity-related Polymorphisms and the ABCB1 Gene

Pharmacogenetics of Antidepressant Response – An Update

Remember the saying, “an ounce of prevention is worth a pound of cure.?” Well, I’ve recently discovered that an “ounce of prevention” doesn’t exist anymore. Must be inflation. You must wait until you need the “pound of cure.” Like loaves of bread for $1.00 and gas for less than $2.00/gallon, it’s a thing of the past. (I will offer a qualifying statement – perhaps that is just what the experience is here in big-city teaching hospitals, where doctors wear multiple hats and patient care is often not a priority but a minimal portion of their daily responsibilities – or that’s what I was told by a doc that works at one of these big teaching hospitals in Boston.) Even if this is true, the text below describes with much disdain my current experiences.

I’ve been absent from the blog world for a while. Why? I’ve had several bad experiences recently with the medical community. These have made me take pause to re-evaluate if all this blogging is really worth the effort I put into it.  And I am mad as hell about what I’ve ben put through these past couple of months. There is no “hope” and “rainbows” and “support systems” to fix these problems – and please – don’t dare mention anything about unicorns – there are NO unicorns in medicine. Only zebras.

What I have learned?:

– Doctor-patient communication is NOT the major problem we all think it is. It is DOCTOR-DOCTOR communication. Most docs make a respectable attempts to communicate with their patients during the office visit. It’s AFTER the visit that everything goes down the tubes. For example, one would expect the specialist that a PCP sent a patient to see to at the very minimum, to follow-up with that PCP in some manner. So far, I’m 0-4 in that category. Even phone calls from my PCP’s office are ignored. Pathetic. So, I’ve spent money and time and received nothing in return.  That’s $35 per visit x 4. Plus mileage, train fares, parking costs, time off from work that my husband had to take to bring me to these appointments. And we get – BUPKUS.

Hey – all of you exalted specialists in those fancy teaching hospitals – please remember that patients can’t get an appointment to see you on their own –  their PCP has to refer a patient to see YOU. Don’t you think they are there for a real REASON?

Image

– Major teaching hospitals are touted as “the place” to see specialists because they “work together” and “do research” on unique cases. Well, I’m proof that unique cases get kicked to the curb and get ignored.

Image

– Doctors within the same practice groups don’t communicate or read what is in the charts on the patient they are seeing. I was degraded by a “new” doctor that quite obviously didn’t take the time to talk to my primary treating physician at this particular clinic, and did not even peek at my SIXTEEN years of history of my condition in their computer system. The 6 surgeries and 5 pages of every type of modality that I have tried over the past 16 years was simply ignored. Just more waste of time and money and mileage. Of course, no resolution, or offer of any solution was presented, other than – get this – “have you tried “healing touch?”

– I was told point-blank that my “disease process” was not active enough to be considered treatable. This is in spite of all kinds of abnormal test results, objective physical symptoms (and I take pictures to document them) and bringing my husband as a witness to my appointments to basically say ‘ “do something – she needs help!” So, I’ll come back when my disease process is so advanced, I’m close enough to death – perhaps then I’ll be interesting.

Image

– Not one single doctor has taken the initiative to look at all my symptoms and noticed that they ALL fit neatly into a neat package. They are all related in some way. Yet, each is so concerned with treating just the right pinky finger or the left side of the pituitary gland, I am left to get worse and worse and worse. – Thanks to Obamacare‘s EMR mandate – every single hospital I go to has completely different medical history on me. And, there is NO POSSIBLE WAY to get this corrected. I have tried. Why?  Because the brilliant author of the ACA forgot to require reciprocity among hospitals’ EMRs…and completely closed up the ability for patients to correct mistakes they find in their health records. I got this info direct from the legal department of a VERY large hospital here in Massachusetts. Please don’t argue with me on this one – argue with them. I’ve been through hell and back with three different hospitals on this one. One of them has banned me from talking directly to the doctor I saw – I have to go through “Legal” – as THEY made an (honest to goodness) Federal case out of the fact that an incompetent tech they have employed at their hospital entered all of my meds, medical history and allergies incorrectly into their computer system, and silly me, I tried to have it corrected.  Bad Lori!! I just should let the hospital believe I’m on meds I’ve never been prescribed, not let them know I have some severe allergies to certain meds, and that I have some serious chronic health issues. How stupid of me. Thanks, Obama, for not letting patients be allowed to correct the mistakes that incompetent employees at hospitals make in their own medical records – and for making sure that was in your 2700 page book of rules, most of which have nothing to do with health care.

Image

So, what the heck is going on????

In my not-so-humble opinion???

The #1 problem: Doctors are NOT interested in communicating with EACH OTHER.

– They are willing to “play nice” with their patients during office visits (most do) – but beyond that, the paternalistic God complex still exists. (male or female docs can be afflicted with this – it is a term of art referring to the attitude that they think they are immensely better than others that did not attend medical school.)

– The strong belief that women are simply “attention-seeking” as they go from specialist to specialist looking for answers is a prevalent as ever.  Please, see my previous post, “Does Your Doctor Believe You?” for studies that evidence these pervasive and disgusting practices that continue to disparage patient after patient, causing more harm to each of them at every visit.

Will I continue to blog?

Is it worth it?

Does anyone care what is REALLY going on?

Your thoughts – I’d be interested to hear what others have experienced.

This will be a short blog entry.

Promise.

I just discovered two MAJOR hospitals – one of which I’m having an operation at in less than a month, has incredibly incorrect medical information about me in their computer system. How did I learn this? Open Notes. Now you know which major hospital i’m referring to. Incorrect history, medications listed I’ve never taken, incomplete medication allergy lists…
I m scared.
It’s not for lack of trying.
Everyone knows about my multi-page info printouts that contain all this info that I bring to visits. The same ones numerous docs have told me they think are “great” tell me I’m a “god patient” and “wish more patients would take such an active role in knowing their health history, medications and diagnoses.”
But what good does it do if this info never makes it into the EMRs?

The second hospital is in Worcester. A major teaching hospital – I gave my printout to the person takes with entering this info (according to the doctor) and not only couldn’t she read Englush, she dint know what”PRN” meant, nor what basic medications were. In the nail today, I received a summary if the “medical record” this huge and well-regarded center has on file about me.
I was sickened and infuriated. How many times do these people have to be handed computer-printed, legible information – and how difficult is it to scan/transfer this info into their systems? My PCPs network seems to have this down to a science (www.OneMedical.com, for those interested in a competent organization).

This so-called “Personal Medical Record” listed meds I’ve never taken, incorrectly spelled meds, meds that were the incorrect formulation or the wrong dosages…and, my medication allergies: INCOMPLETE – with the most important ones I list first on my printout – the ones that cause anaphylaxis – not even on the sheet. I guess they don’t care if I suddenly die from anaphylaxis on their watch.

I promptly wrote letters to the Patient Affairs offices of both hospitals. I enclosed the poor excuse for a “record” that the Worcester Hospital sent me, highlighted, noting all the errors and omissions.
I also quoted statistics from the IOM: 70% if medical errors are cased by improper treatment. 90% of those are preventable (a 2008 statistic). Also, medical errors are the 7th leading cause of death in the U.S. (Another IOM statistic from 2013. (The Worcester hospital refuses to accept email – ill dry to flag down a carrier pigeon tomorrow….come on, get with the 21st century like the rest of the medical community!!)

What a warm and comforting feeling that gives me when I have surgery planned at one if these hospitals in a less month. Perhaps, If I had a death wish, it would.

This oddly follows in sync with an article published by Medscape recently (Oct 24, 2013) that asked doctors what they thought the top ten barriers were to the practice of medicine today. Guess what several referenced – technology. One doctor ( Henry R. Black, MD of NYU Langone) specifically mentioned the incongruence of EMRs – systems that were supposed to simplify and streamline patient care, allowing all doctors access to a patients test results and specialists’ reports. The problem? No practice or hospital uses the same EMRS, or EMRs that can interface!! What are we paying for?

This has become the number one problem in healthcare, hands down.
How can you even worry about doctor-patient communication when the doctor isn’t even looking at The correct information.

Discuss this with your doctors and quietly freak out…and PLEASE check your EMRs for accuracy! If mine are incorrect in 2 of the 5 major healthcare systems I deal with – I fear what may or may not exist in the other three.