Untangled Health

Consumers Unite To Drive The Changes We Need

Tag: #PCPCC

Open-Access Guidelines for Patient-Centered Care (The tools we need are here!)

patient logo

How do I find the best treatment for me? Is it my doctors choice? Do I have anything to say about it? Is it possible that my doctor is unaware of best treatments?

Taken from the British Medical Journal. Click link to view the Aortic Valve Replacement Guideline.“The BMJ launched an innovative strategy to promote patient partnership in 2014. It took this step because it sees partnering with patients, their families, careers and support communities, and the public as an ethical imperative, which is essential to improving the quality, safety, value, and sustainability of health systems.”

 

My suggestions:

Make sure you read the educational material your clinic gives you at the end of the visit then compare it with what you are able to find independently. This is most important when you are diagnosed with a new condition or your doctor recommends a diagnostic or surgical or therapeutic procedure. By the way, new medicines are therapeutic procedures.

Since errors happen…what I choose to call Therapeutic Misadventures I like to check out the current best practices and research outcomes published in Europe, Japan and the USA.

Cool Tools are here!  Everyone knows that I am a big promoter of physician-patient partnership when it comes to researching treatment methodologies and selecting interventions for our personal care-plans. I received notice today on the MAGIC projects publication of guidelines in the British Medical Journal. This particular guideline is for Aortic Valve Replacement. BMJ provides an online experience for doctors and patients called Partnering with Patients. The  content provided on the site includes best practice guidelines for many medical procedures. One source of the guidelines is MAGIC project.

This is an international group, originating in Oslo, Norway operating as the MAGIC project. Magic is an acronym for “MAking GRADE the Irresistible Choice,” where GRADE is a system to develop high-quality guidelines that consider the whole body of evidence on a certain therapy in an objective way, and incorporate patient values and preferences, as well as other considerations.

For the consumer this implies the MAGIC team applies a scientific rigor to weighting the evidence supporting the effectiveness of medical and surgical interventions. The real bonus is that they also employ the patient’s perception of effectiveness which can often be missing in research studies. A common example I like to use is change in mortality rate. Example: If I have emphysema and experience failure of my respiratory system I will die. However, there is a variety of life sustaining interventions available to me in the USA. These include: Supplemental Oxygen, inhaled and oral medications and mechanical ventilation. Virtually all people with severe emphysema are faced with making a decision as to the technologies they will use to extend their life. Many choose all three: Then again, I have had many patients in the past elect to not receive mechanical ventilation as the notion of being connected to a ventilator for the remainder of their life is not acceptable.

When any of us with chronic illness take advantage of a therapy I would hazard a guess that we should always take the pre and post treatment morbidity and functional status into account. Questions we need to ask must include the published guidelines reported changes in health related quality of life after treatment.

I hope these projects become the foundation for a curated library of best practice and treatment outcomes in the near future. Of course my preference would be to make them free for patients which might level the playing-field for those with low incomes in societies with huge disparities in care and health between the wealthy and impoverished. That said, as I learn more about the availability of the guidelines and find those that are free and unbiased by funding resource or error in design I will publish them here.

Have fun and educate yourself prior to making any decisions on how to manage your health.

Warmth to all of my friends along the way.

Jeffrey 

Here are link to Magic

 

The Onslow Magic Project for clinical guidelines

 

 

What is at risk if Obamacare is Rescinded

Reconciling data in my six health portals

What is at risk for all subscriber to commercial insurance programs if Obamacare is Rescinded?

This analysis with specific allegorical references was posted by my friend Wendy today. I find it accurate and far beyond my skills to interpret and describe What is at risk for EVERY-BODY

Obama Care is. . . The ACA (Affordable Care Act)
Last night as his first order of business the new president signed an executive order to repeal the ACA. Here’s what this means… even if you are safely covered behind employer-provided insurance, the protections set forth in the ACA (Affordable Care Act), apply to you too. And if those protections are repealed along with the rest (or any part) of the program, you will also be affected.
That means you may be trapped in a job, because your pre-existing condition may mean you will not qualify for new insurance offered by another employer, and the cost of private insurance would be prohibitive. If your employer shuts down, lays you off, or even changes insurers, well, you are out of luck. The Senate GOP voted this week that they would not require an eventual ACA replacement to protect against discrimination for pre-existing conditions, which was the standard before the ACA.
It means that you (a young adult under the age of 26) or your adult children (over 18) may find yourselves without the protection of insurance, as the Senate GOP voted last night that an eventual ACA replacement will not be required to allow young people to remain on their parents’ insurance up to the age of 26.
It means that if you have a high-risk pregnancy, or life-threatening illness such as cancer, you may not be able to afford all the care you need, because you may hit lifetime or annual caps. If you have an infant born with any kind of severe medical condition, or premature, they may hit their lifetime insurance cap before they are old enough to walk. The Senate GOP voted last night that an eventual ACA replacement program would not be required to prohibit lifetime insurance caps.
It means that if you are a struggling parent who is uninsured or under-insured, you will no longer be able to count on at least your kids getting the routine medical and dental care they need under the Children’s Health Insurance Plan (CHIP). The Senate GOP voted that CHIP is not required to be protected by an eventual ACA replacement.
These provisions of the ACA affect everyone in this country, not just those without insurance through their employers.
If you are not okay with these changes, call your representatives and let them know what’s important to you. Nothing has been set in stone yet, but our legislators have shown us a map of what they plan to do if constituents don’t make their voices heard loud and clear.
Hold down here to copy, paste, and post (do not share) on your timeline, if you feel this information needs to be passed on.

This is a comment from NORA on FaceBook
As a person with R.A. (pre-existing condition) Before ACA I was never able to purchase even basic insurance for under $1500 a month and thus went without insurance from the time I graduated University until I was 49 years old. It’s $2000 per visit to a Rheumatologist, so I only went once a year and could not afford medications. I lived with daily debilitating pain and exhaustion among other things. If you know somebody with RA you know is serious. ACA provided me with good affordable care at a price I can afford $359 a month. I responded very well to BASIC medications for RA that I could never afford before (but with ACA can) and am now able to live life normally and run my small business again. My great Doctors also noticed I had serious liver damage from years of taking OTC pain relievers like Tylenol and Aleve. They were able to fix that too. They said it may have killed me or become cancer without treatment, at the least led to early death. If I lose coverage for my Meds am already planning to go on SSD and Medicaid and close my business. True Story. #ACAWORKS PS Only deplorables don’t want people to have health insurance.
Like · Reply · 1 · 19 hrs · Edited
Wendy Lannon
Wendy Lannon I think of you Nora whenever I hear people say ACA doesn’t work. #ACAWORKS

SalesForce as a Patient-Centered Longitudinal Care Platform | I am one happy Diabetic!

The technology facilitating Patient Centered Care arrived over ten years ago. It was all a matter of configuration!

The technology facilitating Patient Centered Care arrived over ten years ago. It was all a matter of configuration!

I am pumped!
Years ago…1997 I believe; I had a job working for DocSite: the company founded by Physiatrist John Haughton MD that became one of the premier Registry products used as the EMR community was attempting to define itself. In the DocSite product we collected measures or “clinical indicators” that were compiled around the patient and associated with an infinity of conditions. Essentially the data design allowed physicians and grant recipients to have a single patient record yet extract, analyze and report on any constellation of outcome measures without having to spend money on redundant disease registry products. Example: Blood pressure is an important measurement for diabetes and heart failure. In diabetes the measure importance is 1) how often it is done and 2) the blood pressure value. In Heart failure the same measures of process (measurement frequency) and outcome (BP value) are required but they might be different depending on the cardiovascular guideline and contrasting diabetes guideline. In the DocSite system the blood pressure recording was simply a vital sign. The rules defining threshold for compliance with guideline were defined separately and associated with multiple conditions. When the doctor generated the data for PQRI and the Cardiovascular Excellence programs a single patient outcomes dataset was generated based on the programs associated with the patient. When the patient returned to any clinician using the Docsite system the Visit Encounter Sheet displayed the current measures due, the last values and trends for each measure and gave the physician or extender a place to generate an education note. Inexpensive, simple, multi-user, modifiable for EBG and data submission automated through clerical “generate and send PQRI data”. Now, I owned some stock in the company so I am biased but quite frankly I thought the system was elegant once it received data feeds from pharma and labs!

All of us at DocSite used a Client Relationship Management cloud application in our client services department. After using it for three years or so those of us that had worked in a previous company “the forerunner of DocSite” called Cognimed all thought that Sales Force had the proper design to create a community wide care coordination and patient centered care planning tool We had built one in the 1990s and sold it and moved on with our lives.
Today I see SalesForce has entered the arena. Knowing what I know about its capabilities I hope they capture the market by landslide. Please if you thinking about building a new care management platform…dont. As a patient, I would love to see this thing as an App. in all of my clinicians hands and on my IPhone please. Check out their demo. I am sure it all does not work as advertised but I can attest to the fact that they had the correct data model ten years ago!

Reconciling data in my six health portals

Reconciling data in my six health portals

From Obama to ObamaTrumpCare

someone-to-watch

Someone to watch over me…….
Dear Doctor, will you please make sure I receive the RIGHT CARE!
What do you know about me Doc?
Do you have time to spend with me today; perhaps discuss who I am in the world, what my goals are and what I think might help me feel better?
Are you interested in my Well-Being? Do you and your staff ever discuss Well-Being or is it all veiled in a pile of healthcare acronyms; where Well-Being is described by absence of symptoms and disease?
Do you have the opportunity to discuss my goals and interventions with my other doctors? Sometimes I am not sure you folks talk because my information: from religion and employment history to list of medicines varies between practices. I thought someone was fixing all of the electronic health record issues ten years ago?
I noticed that all of my personal physicians that I have chosen over the last fifteen years are selling their practice or merging into some sort of healthcare system that appears to be managed by the local hospital; is this a good thing? I am really not sure you see me because the person at the registration desk doesn’t recognize me and your Medical Assistant told me that you only had time for 10 a minute appointment today.
Actually, to be honest with you; I am concerned for your Well-Being Doc because you have dark circles below your eyes and tell me that you are up until 10:00 PM each night completing your records at home. I realize that the new electronic health records are cool but shouldn’t they increase your quality of life as opposed to drain any remaining discretionary time you have with your family?
Ya know Doc, I have learned allot about healthcare in my life: Yeah, some because of my training and work but mostly because I have these….”conditions”. The “conditions” have presented adequate challenge to require me to understand the “bits and pieces” that string this system together. I’ll bet you don’t learn much about being a patient in medical school. I am not sure how you could do it without adding another two years to your fourteen years of post-grad education.
Did you know that I have spent ten hours in the last month trying to get a prescription authorized? You know the prescription that makes living with RSD and diabetic neuropathy tolerable! It appears that someone didn’t install your e-prescribing system correctly; something to do with prescription received and filled acknowledgments? I don’t know Man; it seems like the fax machine and pharmacy calls worked better than this e-Rx stuff. The long and short of it is that between your practice, my insurance carrier, and my CVS pharmacy the most efficient transaction I can hope for when I am in pain is 48 hours. My “Well-Being” wasn’t so “Well” this month…..
BUT my A1c is 6.5, my blood pressure is 124/78, my immunizations and other measures of health process and management outcomes are all great. I am pleased to be one of the good data points on your quality report and certainly testify to CMS and Blue Cross that you deserve an extra 5% for your hard work. Might be nice though if I received a discount on my insulin copay for the snappy A1c that has kept my feet attached to my legs and my body out of the hospital these last 50 years.

So what is Right Care? How do we know if we get it? Is it through the Diabetes DM report? Is it through the patient satisfaction survey that I take at each and every service provider I see? They all are very similar, I wonder if anyone has ever considered a “whole system measure”; at least something better than the Service Excellence Survey that reminds me of the material sent to me by American Airlines after every business trip. By the way, I always give my providers 5 stars with the exception of the conglomerate that bought up the primary care practices; their employees seem miserable. I find it amusing that their employees all where buttons that say “Ask me about the “Name of Healthcare Institutions” WAY. I guess they all have some kind of culture that is supposed to make my experience less painful as a consumer? Perhaps more like Disney Land I suppose.
What I really long for is my diabetes pediatrician from 1965. Dr. Lipmann. He always asked me to discuss how I was feeling about school, whether I had enough to eat at home, did I have any dreams and whether or not my diabetes would prevent me from achieving my dreams. Heck, he called me on Sunday night to as how I was feeling when my urine sugars were running 4 plus. When I left his care at the age of thirteen he had illuminated an interest in human biology that has carried me through my life. On a darker side of my childhood life he also notified “Children’s Protective Services” when he discovered I was living in an alcoholic flop-house!
My friend Tony is from another country. His mom had a CVA last year. She was transported to the ER, hospitalized, transferred to a facility with real rehabilitation specialists and doctors on staff daily, discharged home with visiting nurses and therapists and returned to society as a healthy 75 year old woman who is now completely independent. Her cost? Well there was no cost to her and the average cost per person for health services in her country is 1/2 of what it is in the USA.
In meeting with my insurance adviser the other day I was informed that my healthcare cost will be more than $500,000 between now and my death; with my diabetes, RSD, neuropathy etc. I wonder how we will cover the services. I really don’t want to be one of those patients that I cared for early on in my career. You know….like the old man and WWII B17 Aviator that looked up at me shortly before he died and said “Ya know Jeff; I used to be somebody once”.
The end of his life was no different than my fathers. Dad died last year from pneumonia at the age of 87. We had just celebrated Memorial Day. He called me complaining of a chest cold and 48 hours later I found myself sitting at his bedside with new onset dementia, consolidated breath sounds, a temperature of 101 degrees and abdominal cramps. I asked the Nursing Assistant to get him a bed pan and she informed me that he “just got off the pan”. A few minutes later I overheard her complaining to her supervisor that she had no intention of getting my Pop out of bed because he was a difficult transfer due to his combativeness. Pop was angry for sure but not combative. Then I witnessed the IV nurse insert a 18 gauge catheter into my pops wrist. She never registered IV access and proceeded to deliver 500 cc of solution into the sub-cutaneous space. This was the only vein he had left since they had made the same error the night before in the opposite hand. By 6PM his hand was as large as a soft-ball and this was hours after I complained about her technique.
So the following day Pop got a PICC line. PICC lines are infection risks!

Three days later I took him to the SNF with his PICC line and met with the therapists. Dad was becoming more lucid but I had concerns. I met with the Charge Nurse and facility director to assure his good care. I was concerned about the additional risk for infection from his new PICC line. You see, this facility was part of his life-long $450,000 investment in a continuing care environment; supposedly the best available in Huntsville Alabama. I used to direct clinical services departments in these facilities earlier in my career and was aware of their financial strain as they attempted to deliver hospital level care for 1/3 the cost.
I saw Pop the next day while he was cycling on the recumbent bicycle in the rehabilitation department. He had 20 minutes of therapy to go but as soon as I showed up to watch his work-out the therapist terminated the session and quickly wheeled Pop to his room so we could chat. Dad looked horribly sad, I knelt down to say good-bye kissing him on the forehead I said “I love you Dad!”; he looked up and said “And I love you Jeff”. These were our last words.
Three days later I received a call at 3AM from a person who could not speak English. He mentioned my father’s name and I asked for someone who could speak more clearly. The second person I spoke with also could not speak English. Finally a paramedic picked up the phone…”Mr. Harris, your father is unresponsive and we are taking him to the hospital”.
After a quick dialog I was able to determine that Pop had explosive diarrhea several hours earlier and simply lost consciousness. I called ahead to the Emergency Department to inform them of my father’s forthcoming arrival and that I was worried he might be septic. I told the doctor that Pop was a DNR patient and he should call me when he arrived. When Pop was evaluated the ER Doctor called me with his lab results and it was quite evident that he was dying and most certainly had been allowed to dehydrate while at the Rehabilitation Hospital OOPS I mean Skilled Nursing Facility OOPS I am not sure what I mean. God did I weep as the ER doctor and I discussed his DNR.
I wrestle with the fact that I might have been able to save Pop if I had pushed for re-hydration, antibiotics and other therapy but I couldn’t help think about Pops state of well-being. You see my brother and I had spent years shuffling him around between neurosurgery in Birmingham and other clinical facilities. At one point I had imitated a physician to keep my father from being discharged prematurely after his brain tumor operation. He had been in the hospital for a week. The Medicare Prospective Payment was going to pay for eight days and the hospital was pushing him out to a skilled nursing facility. I watched my Pop eating and realized he had an aspiration problem. Fearful of aspiration pneumonia I asked to have him discharged to the rehabilitation beds at the University Medical Center. I wanted him to receive a speech language therapy evaluation for aspiration risk and rehabilitation services. To get the transfer to rehabilitation where a doctor and therapists would be available; I had to retrieve every clinical skill I had when meeting with the staff to justify his case. When they assumed I was a doctor, I let it ride. Feeling shame the next day I convinced myself that I would do whatever I needed to protect my father.
You know, to make sure he would receive the
Right Care.

As the ACA (Obamacare) was implemented I began to have hope. You see, this year 2017 is the beginning of Medicare’s observation of how well inpatient hospitals and post-acute care facilities integrate. One important measure they are watching is the frequency of readmission to acute care for the same diagnosis. This combined measure of how well institutions, nursing homes, home health networks and primary care communicate regarding a patient’s process as they are handed off between facilities is to prevent patients from becoming ill and requiring re-hospitalization. Trust me folks, it used to be horrible: I can remember turning patients around as they arrived at our rehabilitation hospital and sending them straight back to the Medical Center that had just discharged them. You see, some were still in heart failure and semi-conscious; not only could they not participate in rehabilitation; to attempt rehabilitation might have killed them. But you see, the hospitals were not linked to the rehabilitation and skilled nursing facilities through a common therapeutic goal and reimbursement mechanism. The hospital in Boston just wanted to discharge the patient prior to exceeding their Medicare reimbursement allotment. We however had marketing nurses out in the field accepting any warm body with a heartbeat that just might survive a 21 day Medicare stay in a Skilled Nursing Environment.
My friends had no idea why I never lost my job by reversing the trajectory of these patients. What they did not know was that I had a compassionate family owned corporation employing me who trusted my clinical intuition.
Alas… as of today….Obamacare is being repealed and we have yet to be informed about “TrumpCare”. My guess us that we will return to the past with the exception of mandatory care for persons with pre-existing conditions. Then we will see just how much our policies cost and what our end of year out of pocket expense will be.
For my wife and I,
We are searching once more for our peeps. This week I have looked at my well-being through the end of my life if we ex-patriate to Canada. My cost will be $0.00 for healthcare. My waiting time for a CAT scan will double but Canada’s outcomes for Cancer and Cardiovascular Disease and diabetes are slightly better than in the USA. So what do we have to lose? In fact, Canada doesn’t amputate many diabetic limbs. You know why? Because all of their diabetics have access to care!

Fondly thinking of you fellow patients and consumers;
Jeffrey Halbstein-Harris
• An advocate for those who feel lost
• Always watching
• Harnessing the compassion that surrounds you in a time of crisis
• Connecting you with the best science available
• Minding your pocketbook
• Working to return you home safely

Wait, Wait, Don’t Kill Me; I have my data and you don’t! A Chronic Disease Patients Point of View Part 1

 

A 33 year veteran worker from the US HealthCare Industry who was diagnosed with type 1 diabetes in 1966 describes his  realization that health care efficiency solutions must first address social and business barriers prior to implementing technology and hope for the future.

Reconciling data in my six health portals

Reconciling data in my six health portals

Keeping our eye on the ball: Let us not forget why we showed up over these last few years and started shouting out!

A small sample of issues that we learned about in the last fifteen years:

  • Disproportionate Growth in Healthcare Costs (greater than GDP and growing as a multiple of consumer price index) with poorer health outcomes
  • Disparities in care and care outcomes directly related to personal income. (as family income falls so does family health)
  • Lack 0f availability of critical, decision influencing data when and where we are treated (The Patient Information Gap) arising from lack of governance of data exchange between industry segments, physicians and payers at local, State and Federal levels, (often hidden behind well intentioned efforts to secure the privacy of patients).
  • Reliance on antique point of care exam model: Patient and family as historian.
  • Poor price transparency due to confusing and always changing industry syntax such as: Facility charge, Allowed amount, Deductible, Co-Pay, Co-insurance, Patients responsibility, Cost Sharing, Plan Type, Episode of care; Discharging to next lower level of care;  Medical Savings Account appeared to us as a shell game where we would always find our total cost out of pocket living under a different shell!
  • Certification processes: JCAHO Ambulatory, JCAHO Hospital, NCQA, URAC, CARF, Insurance Company’s Center of Excellence! What does it all mean! 
  • Questionable ethics of pharmaceutical industry: Tiers level 1,2,3,4. When our doctors told us they prefered a brand drug because of evidence that the drug was more effective but the insurance company required we pay 4X cost of their PBMs generic who do we trust! Will I die because I spent $200 less per month on my medication than my Dr.Recommended?
  • Numerous Business to Business relationships that supposedly have value for payers but only decrease the size of the consumers wallet. What is a PBM anyway? A Pharmacy Benefits Manager! You mean my medical insurance company needs another company to manage the medications!!!!
  • Disease Management Companies: Nurse calls me monthly who works for Depression Institute LLC who evidently subcontracts (like the pharmacy benefit manager) to my insurance company or my employer. She asks me if I am” downhearted and blue.” I say “yes” and she sends me some uplifting books and websites to look into. Meanwhile I would like to see a therapist because I am loosing function at work due to diabetes and am very sad and can not concentrate. My primary care provider sees 10 patients per hour and is empathetic but can only refer me to a psychiatrist associated with his institution. The institution psychiatrist places me on multiple medications to address my depression and the nurse from the DM company calls me monthly. I feel no better. Months later I begin having heart palpitations which turn out to be a side effect of the antidepressants. I am now afraid to work out.

Then we approved the HITECH ACT, ARRA and ACA all of which contain system enhancing improvements that are to address our concerns and help us feel safer, have better health outcomes and have better consumer capacity to analyze the state of our own health, determine our care needs. plan for our care needs and finance our care. Because as we all know: We are all temporarily able-bodied individuals; that is unless we are delusional.

My mission with these next series of posts, articles and perhaps a self-care book is to frame America’s Healthcare System as it evolves in front of you. How is it that I can do this when others can not? Well many, more qualified people can. Most will not due to the shackles of our industry and survival instinct. Ezekiel Emanuel will lay it all out for you if you listening to a compassionate physician who gets the big picture. For now: I am no longer dependent on this industry to support me. I have no fear of exposing the truth including those elements of my past that cause me to carry shame, anger, fear and a substantial amount of JOY. The truth is; all of the commentary I have heard at cocktail parties attended by physicians, employers, patient rights groups, hospital administrators, nurses, mixtures of all levels of worker-bees is beautiful material and quite humorous. If you are a healthcare worker and are reading this than you know this material is true. If you are recently graduated from your professional training venue whether it be nursing. medical school or other and you find my words a bit offensive then please forgive me and disengage 

So for now: Let’s get started, I welcome all feedback as this material comes belching forth from my repressed memory and will try to frame my words with ego disengaged.

 

My first experience with accidental death bordering on murder:
In 1982 I experienced one of three medical errors in my career that culminated in a person’s death. I was 26 years old so I took it less seriously than I do now: but it was the start of a change in consciousness regarding my thoughts on communication breakdown within the care delivery system. Ultimately this one focus would become my life’s pursuit.
Setting: A beautiful, crisp fall day in New Hampshire, My duties that day were respiratory therapist ‘on call’ for code blue (resuscitation events): A man of about fifty walked into our emergency room noticeably distraught. “I can’t catch my breath he said, it feels like my heart is coming out of my chest”. We took him immediately to our trauma room where all of the equipment would be available should we need to perform complex procedures (temporary pacemakers etc). Laying him down on the gurney the EKG technician hooked him up to the monitor and I reached up to turn it on. My job was to assist the team if the patient arrested and then intubate and ventilate him upon order of the physician. What I saw on the EKG appeared to be a life threatening rhythm yet the physician ran into the room and announced the rhythm to be less threatening  which requires a completely different treatment approach: So I figured “well he is the doc and knows much more than little old me”. This was back in the days when a patient’s personal physician could deliver direct care in the ER as opposed to a board certified emergency room physician. This Navy Dr. was quite sure of himself and demanded respect. At the time the Dr’s diagnosis called for electrical cardioversion with a defibrillator to establish a normal rhythm so I began preparing the defibrillator. However, this was 1982 and we had a new cardiologist on staff so the Dr. in charge thought it best to ask the cardiologist if there was a less traumatic way to correct the patient’s rhythm. He yelled out Hey Dr. XXXX; what is the standard for cardioversion for intraventricular tachycardia? Now keep in mind that the nurse and I were concerned that this was a missed diagnosis and that the patient was in-fact having a heart attack.  We spoke up at this point but were dismissed due to our lower level of credentials RCP and RN vs. MD. The cardiologist said “there is a great new class of drugs that have been used for years in Europe they are Calcium Inlet Channel Blocking agents. Give your patient 4 mg of Verapamil! So our esteemed leader –without running the EKG to show it to the cardiologist pulled up 10 mg of verapamil –not 4 into a 3cc syringe and handed it to the nurse. “You will be okay in a minute Mr. Smith said his doctor, we will take your shortness of breath away shortly by giving you this drug”. The poor man was terrified and his horror made worse when my nurse friend refused to push the drugs into the patient’s IV. Dr. (Navy Save the Day) said “Fine I will do it”; injected the medicine, looked at the patient and then up at the EKG monitor. Mr. Smith sat straight up in bed, grabbed his chest and fell unconscious. As we looked at the monitor we could see that there was a clear EKG rhythm but the patient had no blood pressure nor could we feel a pulse. He had stopped breathing and his eyes were wide open with pupils dilatesd.We worked on the poor man for almost an hour. I intubated him and started ventilating while the nurse began chest compressions. The cardiologist had come into the room to take over the resuscitation effort. As soon as he looked at Mr. Smith’s first EKG he knew that he and the other doctor had made a terrible mistake. Had he looked at the EKG before recommending verapamil he would have labeled the rhythm as acute myocardial infarction with ventricular tachycardia and suggested defibrillation immediately.  What confused the patients doctor who had little clinical experience in cardiology was the fact that his patient was walking and talking.One is taught in school that a person usually loses consciousness when in “V-Tach” however, those of us who spent hours our lives reading 24 hour EKG recordings knew that many patients with good strong heart muscle can be in this rhythm while having coffee with a friend and simply complain of some shortness of breath. So this was an old-school clinical decision support error: the wrong diagnosis (bad data) given to the cardiologist (software decision support engine) caused the report (feedback loop) to the patient’s doctor to recommend the wrong therapy. Taking the advice the physician administered verapamil caused the patient’s cardiac muscle to stop contracting due to the lack of exchange of calcium across the cell membrane.

The patient’s wife arrived 30 minutes later to be informed that her partner had died from a heart attack. It’s hard to forget the screams of agony one hears throughout a career in the hospital ER. There was no incident report or mortality round on this case. The nurse and I were dumbfounded as the patient’s physician took off his gloves, through them on the patient’s chest and said “that’s the last time I ever take advice from a cardiologist”!

What I have just illustrated is a failure to communicate and validate; even in the presence of communication technology. Years later we would have computerized EKG interpretation algorithms that were often ignored due to as lack of trust in the computer. After a decade or so the interpretation algorithms became spot on and many stopped arguing with the machine.

I always wondered after this event “would this happen to me?”

Our time has come: In my opinion we have some brilliant people speaking to the topic of healthcare reform and its multiple components today. The same personalities have formed organizations that bring patients into the fold of healthcare transformation such as the Society for Participatory Medicine and its Sister E-Patients.net.

Furthermore research has confirmed that some basic tenants of care are major correlates of lower cost and higher health outcomes. These are ease of access to a primary care physician, assurance that the primary care physician treats the patient with comprehensive techniques; assurance that the primary care physicians practice coordinates the patient’s care as he or she develops new conditions and problems and requires interventions from other providers or facilities such as hospitals. Furthermore there is evidence that if the primary care database is queried on a regular basis to identify patients with chronic disease that have not been seen or are experiencing a deterioration in health status that populations can be identified and engaged well before they show up in the local emergency room. This type of procedure is titled Population Medicine.

So here we are with all this knowledge and interest. On top of that we approved a National program for the expansion of electronic medical record technology under the Bush administration. This HITECH bill was primarily a jobs creation bill but it was to create something of immeasurable value for us patients, doctors and our loved ones. A single record or location on the internet called a portal where any one clinician that might have an interest in caring for us would be presented with a thorough historical record of our problems, diseases, interventions, therapeutic outcomes, medicines etc. This alone was worth the billions spent since it could make our safe at a time in history when the institute of medicine was quoting over 100,000 deaths per year due to therapeutic misadventure. I call this permanent record “the life-long plan of care”

This engineering feat was not rocket science: it required technology that we had in place and a social infrastructure that we did not. By social infrastructure I mean an agreement among industry providers, provider specialities, hospital organizations, employers and insurance companies to settle on a standard clinical and business syntax defined by the context of the workflow or data flow and not interfere with the transfer of information between organizations holding information and their competitors since patients are transient. Metaphorically speaking it is similar to my exchanging the service records on my car between competing car dealerships and then downloading a copy for myself at home. In fact here is evidence that it is not happening while the private eHR companies selling their wares are owned by CEOs worth billions! Doctors challenged by data exchange

Crap! We still don’t have it! I am reading about campaigns “give me my data!” #gmmdd because evidently patients are having trouble accessing their records, test result etc.

My friends all tell me that they have been told by their providers and doctors that they have their own portal access their records, talk with their docs and download records. In fact they do. Here in the RTP area of NC I can count seven clinical portals that a patient’s clinical information may reside in. I have tested them all and have no problem downloading my personal or a friend’s personal information from each portal. This leaves me wondering if the campaign should be labeled Give Me My Data or “Wait Wait Don’t Kill Me” ,#WWDKM “I have data and you do not.” This is a much more succinct description of the problem in my world anyway. (credit to NPR for paraphrasing their wonderful show “Wait Wait Don’t Tell Me”)

What scares me is that I understand the cost of sharing information and it is not just some random charge made up by vendors. You see the vendors were given three guidelines to meet for interoperable data. However, during implementation it is possible to modify the system templates thereby creating artifacts as data cross the street from hospital A where Blood Pressure means Blood Pressure and Hospital B where Blood Pressure means Respiratory Rate. These are the CCDA documents that your physicians patient portal allows you to download either in the form of a pdf document or .xml document adhering to CCDA guidelines. So where you and I can download our information, good luck uploading it into another facilities records. So, once again…I am doing what I did in 1981 and hand carrying my test results and visit summaries to each specialist and each hospital that performs surgery. From the surgery perspective it is important because I am diabetic and have a family history of hyperpyrexia; a condition where in reaction to an anaesthetic agent your body heats up to 105 degrees and starts to melt on the OR table.

So as we riot against the machine because we are afraid for our very own lives remember who the villains are: No body! The manufacturers have certified their ability to interoperate. The ONC did not consider a standard where it is suggested that you document your capacity to exchange data in all contexts: Administrative, Financial, Result Observation, Continuing Care Document Architecture Record between every known vendor of eHR software that has received the same level of accreditation. This is an oversight or someone was paid off I am not sure. All I know is that the Epic enterprise EHR is deployed in three hospital systems that I use including their partnering physicians and I am unable to transfer my data between systems without a download and manual entry of results which never make it to my medical record because patient entered data are considered unreliable. Such arrogance! Don’t you think?

Below I illustrate and describe my current processes which include the use of MS Healthvault for data consolidation. This will be part 1 of a series that I construct with the objective of embarrassing an industry that has been playing a shell game for three decades with our private and taxpayer dollars. In the end you will hopefully have more clarity on why it has never worked, why it won’t work without a change in societal attitude toward health care as a right vs commodity and how we might change the future by getting clear with our healthcare business leaders and policy wonks now about our understanding of their special interest controlled industry.

I have been reading the same complaints for three decades; I have worked in provider industries and taken advantage of others in accordance with corporate doctrine, I have struggled to get my long-term needs met as well as those of friends, neighbors and family members. I have seen us come around now through three complete cycles of “novel idea that will fix medicine” followed by “new opportunity for new industries to form and to get wealthy on the suffering of patients and the majority of the workers who provide the most nurturing experience while they earn $15.00 per hour. I have had 45-year-old physician friends throw up their hands and walk out the clinic door with tears in their eyes as they dropped their career while still paying their student loans. It goes on and on but I do not. So now, with neuropathy advancing, fingers aching from arthritis as I type I say to you: I might need to rest and bleed for a while but I ask that you carry me to the next gathering to continue the fight.

Patient commits suicide faulting pharmaceutical prior authorization rules as the cause.

Many untold stories

 

Patient commits suicide claiming prior authorization pharmaceutical rules as the cause.

Melt down, do you ever have them?

Well I will share mine with the world in this very moment.

I have carried hepatitis c for thirty-eight years now. That is until two days ago when my blood work returned the result of no detectable virus.

My family’s cheer is magnificent as everyone had considered this diagnosis to be the reason for my premature demise.

The medication I am taking (Harvoni) was approved for 90 days by the Federal Blue Cross program and I am now completing the second month of therapy. The protocol calls for 12 weeks of therapy due to a history of viral re-emergence using an 8 week protocol. We were lucky to get the medication as one course of therapy is $100,000! That is in the USA of course. In Egypt it is $1000.

CVS Care Mark was denied my refill as the date of the prior authorization expiration is tomorrow. That’s right TOMORROW!!!

It turns out that the Blue Cross administered program has a 24 hour lead time required for refills. Their internal processes begin flagging patients for cancellation one day before the actual term date!

So here I sit, just another patient with a life threatening illness who was given the hope of cure one week ago and now is pedaling as fast as he can to get help from his physician to extend the authorization of a medicine that is –on paper- still authorized!

They tell us patients with chronic disease that we are subject to depression. Feelings of hopelessness, loss of energy, inability to concentrate, suicidal ideation: Well I have all of them now. After 48 years of chronic disease, a 33 year career in healthcare where I operated at executive levels high enough to find out some ‘very ugly truths’ regarding this sector of the free market I feel ready to throw in the towel.

So for the next generation of patients: know this…you are on your own. This means it is up to you to find the best team of physicians, nurses, employers, insurance companies and friends to respond to your needs. It will be up to you to command them. It is time to stop being a passenger in the system.

I am the captain of my vessel. I have a wonderful team who is trying their hardest to get me the final dose of medication needed to save my life. I have just been wounded brother and sister so I will lay here for a while and bleed. Then –with your help; I will stand-up and continue telling my truth.

The truth that spills forth in the form of factual events involving actual people making life and death decisions has been held back until this point. I still try to earn a few dollars in the industry and do not want to become one of the untouchables. Perhaps it is time to execute my right to free speech.

When I am done I will rest and figure out another strategy for supplemental income in retirement.  It might be time to close this chapter and dance.

An expression of gratitude for my first $28,000 bottle of Harvoni!

Can believe NC?

Can believe NC?

Last week I published my offer to not accept resuscitation services in exchange for a full course of treatment with Harvoni, the new Direct Acting Antiviral from Gilead that has demonstrated a 95% cure rate in Hepatitis C patients with genotype 1.

In most cases insurance companies, Medicaid and Medicare is not paying for the medication unless the patient has end stage cirrhosis and is queued for transplant. The reason is easy to understand from an economic perspective yet certainly Draconian when it comes to well over 2 million people in the US who suffer with this debilitating illness. Furthermore the price discrepancy between countries is 94 X when comparing egypt and the USA for example. 

In the US a 1 month supply of Harvoni is $30,000; in Egypt it is $320.00

For more, please see my slide presentation below. For now, I want to thank Federal Employee Blue Cross for covering this medication as well as my much needed continuous ambulatory blood sugar equipment which makes this diabetic completely able bodied when away from home and alone.

 

 

I do not know how or why I was approved. Neither does my hepatology doctor. Both he and I were in tears when the fax came in through his prior approval desk. I am now in my third day of therapy. 

All I did was write a story on my blog and link it to facebook, linkedin, twitter etc. Within 24 hours my friends at Humana had retweeted my message and called me to see if they could help. They were not even my insurance company but this is a great example of how some payers are monitoring the internet for clients in need. 

Human did not get back to me but within two more days we had the approval from Federal Employee Blue Cross (my wifes health insurance). Since they are acting as secondary to my Ordinary Medicare the authorization was up to them. 

So whoever you are at Blue Cross, this is one lucky American who thanks you for the generosity to step outside most payers protocol and save my life. 

What a Christmas Present. 

 

THE POST FROM LAST WEEK

I will happily select a DNR status if you pay for my Hep C Treatment 

Hopeful

Hopeful

An economic model for exchange of value between patient and payer.

 Dear America,

I have been notified by both Medicare and Blue Cross that the technology I use for tracking my blood sugar trends will no longer be covered.

I have been notified by both Medicare and Blue Cross that the antiviral medication which has come on the market to cure my Hepatitis C will not be covered.

I would like to negotiate for coverage of these technologies using my history as a patient and known economic data regarding the cost of care at the end of life as a proposed value exchange. 

I understand that the insurance industry AND public sector should grind their teeth when presented with the $1000 per pill cost of the new therapy’s. I also imagine payers are stratifying patients needing transplant for first access to care since the drugs work on damaged livers. What I do not understand is the 287/1 disparity in cost between America and Egypt?

 

A Chronic Disease Patient Reports On e-HR and p-HR utility

 

Reconciling data in my six health portals

Reconciling data in my six health portals

I will be attending the PCPCC annual conference next week and moderating a session on Do It Yourself Primary Care Medical Homes.

Most of my time of late has been attending to my ‘case’ as the demands of self-management are now more complex with the advent of new tools which were to lighten our load. Nowadays I spend at lease two hours each week keeping my 4 p-HRs up to date across four specialty physicians.

Why you ask? Well it appears that someone forgot to turn on the ‘interoperability switch’. I am sure it is here somewhere, I just can’t find it. I know the standards were written for certification purposes, I even have a copy of them. For some reason, here in metropolitan RTP North Carolina: Duke, Wake Med and UNC have all established contracts with Epic. The physicians that I use are independent and they have all chosen AllSCRIPTS and this is my patient experience.

NOTHING CONNECTS

I HAVE AN EPIC MY CHART PORTAL AT UNC

I HAVE ANOTHER EPIC MYCHART PORTAL AT DUKE

I HAVE AN ALLSCRIPTS-MEDFUSION PORTAl AT GARNER INTERNAL MEDICINE

I HAVE AN ALLSCRIPTS MEDFUSION PORTAL AT SOUTHERN DERMATOLOGY

I HAVE AN ALLSCRIPTS PORTAL WITH NO MED FUSION AT NC CARDIOLOGY

I HAVE AN ALLSCRIPTS PORTAL WITH NO MED FUSION AT MY ENDOCRINOLOGIST

I HAVE A HEALTHVAULT PORTAL ATTACHED TO LABCORP AND SURESCRIPTS

 I AM UNABLE TO TRANSFER CCR S BETWEEN RECORDS

THE FACILITIES ARE NOT TRANSFERRING THE RECORDS

OUR TAXPAYERS SUPPOSEDLY BUILT THE NCHIE TO CONNECT TO ALL PROVIDERS

I started out on this journey to reduce errors in medicine in 1997. Why are we still here? Please don’t blame it on Obama, Bush, Clinton; well you get the picture.

Here is my ‘secure message’ to my Medical Home

My recent note to my PCMH

My recent note to my PCMH

 

Physicians retreat from accepting NC Medicaid Patients

cemetary at dusk

I suppose the NC Legislature will eventually accomplish their objective of reducing Medicaid expenditures for the chronically ill. Either individuals like myself who have diabetes and are unable to afford a $500.00 insurance premium through our two payer exchange will either die or move.

Please note: Within the last month, Raleigh Endocrine Associates the one and only local provider of diabetes specialty services in the region will no longer accept Medicaid patients. For now, the primary care doctors (of which there is a shortage and no plan to adopt new reimbursement strategies for high quality disease management outcomes ) will have to take on the Medicaid diabetics alone.

I spoke with a young man this morning. At 26 he was discovered to have type II diabetes when receiving  his admission exam for the local community college. It has been weeks since he was able to purchase his insulin. I just happened to meet his uncle on the plane two weeks ago and called the fellow today with information on methods to access medicines for the treatment of chronic illness. Seems like the least our legislature could do is provide adequate resources for maintenance medications: Even if only to keep ED visits down.

More on the land of Oz (North Carolina)

Heck! With health insurance we can afford a cup of coffee!

Heck! With health insurance we can afford a cup of coffee!

It is so unfortunate that the Senate has demonstrated such ignorance of the systems in NC that have provided frequently cited information on the cost benefit associated with Medical Homes.

I came here in 2001 to work with Community Care of NC following the sale of my company to Aetna Health. The technology we sold allowed Medicare Advantage Programs to identify, target and engage at-risk seniors through referral to primary care case management. It was clear at that time that the lessons learned from the world of HMO managed care had reached the end of their useful life as physicians had learned about the concepts of cost control through limiting redundant procedures and using evidence based guidelines in the 1980’s. The 1990’s brought us minimal returns in Disease Management which was the initial model deployed by Carolina Access’s efforts in Asthma and Diabetes population management activities. Those in the US that were on the cusp of ‘the next big thing’ were organizing for Primary Care Case Management through regional networks. I had spent 1999-2001 making presentations to the likes of Aetna, United Health Care, PACE and Empire Blue Cross to sell our intellectual property. If the commercial insurance industry understood the value of the marriage of technology with Medical Homes in 2001 it was a sure bet that our entire delivery system was on the verge of major payment reform.

Having had these successes in the private sector, my wife and I moved to NC after learning about the evolving Medicaid program which ultimately was titled Community Care of NC. We had a sincere desire to see a replication of a successful private industry venture through the public systems of care.

Since I was from the ‘evil private sector ‘I often heard ridicule from folks working in public programs here in NC. However; the willingness of these people to adopt information technologies that would increase their understanding of the Medicaid population and facilitate the design of delivery systems to tackle specific risks for the State of NC and separate regionally-managed community centered action plans for twelve regional networks was undoubtedly supported by the experts and General Assembly alike. Since that time it has become clear to all who work in the field of population health and disease management that the involvement of local providers, patients, payers and institutions in the creation of these programs is critical to the success in terms of both return on investment and quality of care.

So here we are: Those of us fortunate enough to work with these teams learned many lessons. When I left CCNC in 2006 I worked nationally, implementing similar programs across multiple states. I frequently heard how impressed various leaders in healthcare were with North Carolina’s success at improving the health of persons with diabetes and asthma as well as making a significant dent in the inflation rate in NC Medicaid when compared with other States.

So why would the Senate disband a working solution. I witnessed the reports from various budget experts at the public forums held last spring and noted a general lack of proper methodology when reporting cost data. For example: There was no evidence of proper control group selection and illness burden adjustment. When I stated to a former Senate member who happened to be a surgeon the errors in the reports used by the committee to compare cost benefit he agreed with me and stated “We really are not sure what questions to ask”: Yet the citizens of NC place their trust in this group to reform Medicaid.

Of course, when the public was asked for input, the decision was made to keep the existing program. Obviously many became clearer on the benefits. Then, out of left field comes enough controversy and distrust to once again, throw out the baby with the bath water.

Now that I am retired the muzzle of political correctness is no longer relevant. So here is some more feedback that is based on actual happenings in my life since working in NC.

I returned two weeks ago from the Patient Centered Primary Care Collaborative, a 10 year old group spawned from the private sector in response to the escalating costs of care in this country along with the fact that we are rated far down the line in healthcare outcomes when compared with at least seven other industrialized nations; few of whom conform to what we like to think of as traditional socialist thinking. I hold a co-chair position with this group and have gratitude for hearing the current thinking of the ‘best and brightest’   a club of economists and CEOs which I certainly do not qualify for membership.

During the conference a lead executive in a fortune 100 company along with several others from other organizations respected by all who read the Wall Street Journal told me that he had been asked to consult with the Governor’s office after the GA changed its mind about Medicaid outsourcing. He asked me what I thought and I gave him feedback on my personal observations of the successes achieved by Community Care of NC and told him a story about a similar plan assembled in Chicago in 2007 where I had a consulting contract. The Chicago plan failed since the commercial HMO and technology vendor had not developed succinct written requirements. I recall the meetings as if they were yesterday: Especially the frustration I exhibited in public when I found out that the HMO had not connected with the Medicaid primary care providers in Chicago prior to submitting their proposal. So here I had evidence of a public –private partnership success story in NC and private failure in Chicago.

My business friends that had reviewed the politics and business cases in NC for our Governor had all recommended that the State keep CCNC and the Accountable Care Organization models that had been promised only two months ago. Unfortunately their actual comment to me was: “Sorry Jeff, we do not understand the logic, the drivers appear to be something other than cost and quality. Perhaps it is time for you to leave.

What more can I say. The Senate’s budget is counter-intuitive yet those who are emotionally trapped by their opinions concerning the ACA seem unwilling to discuss the details as to why it makes no sense.

Does the GA realize that the Triad had a huge problem with mothers using the emergency room when their children became dehydrated from GI influenza and that the local CCNC network assembled a clinic to educate mothers to master the task of orally rehydrating their kids when they were sick which brought down the ER visit rate to almost nil?  How do they think an HMO will be able to address local needs with such specific detail and provide educational resources?

I have had diabetes for 48 years. I remember when Blue Cross sent my refrigerator magnets to remind me to have tests performed and monitor my blood-sugar. I have no idea how much my employer paid for that Disease Management Service but I do know that I had to argue for my insulin pump in 1984: The one tool that I attribute my lifespan to today.

I will close with this:

For the last six months I have been working with some private practice ophthalmologists who are willing to treat Medicaid diabetics. Many specialists will not treat Medicaid patients due to the lower reimbursement but these folks are a dream team. I assembled a program description and took it to the NC Medicaid Medical Home leadership to get their feedback. They were very pleased to see local people getting involved with creating specialty networks that would treat their patients. Why? Well we have a problem with diabetics becoming blind if they are on Medicaid due to inadequate access to specialty care. So here I was offering a bundled service at ½ the commercial rate charged by the hospital next door.

Unfortunately, I have had to place the project on hold. One of our major criteria for inclusion in the retina service for diabetics is that they are tethered to a Medical Home. As of a few weeks ago I can no longer assume we will have a relationship with a Medical Home enterprise.