Untangled Health

Consumers Unite To Drive The Changes We Need

Category: Health Economics and Policy

Health Care Consumer Empowerment

 

When interviewed by a friend (a conservative talk show host with wonderful insight into the finance industry) I was almost cut short as I discussed universal health care. Shifting focus to consumer empowerment I was allowed to offer insight into the tools, providing consumers with knowledge regarding quality and price between facilities and providers.

 

 

 

21st Century Cures Act Trusted Exchange Framework and Common Agreement Kick-Off Meeting

Listening to a Webinar produced by the ONC (Office of National Coordinator for HIT) today I was content to hear about the progress of SHIEC (Strategic Health Information Exchange Collaborative) and NATE  (National Association for Trusted Exchange) during the morning review of National Trust Frameworks and Network-to-Network Connectivity.

It is clear that consumer need is receiving attention: We are far behind the curve wherein we have vocalized our frustration with barriers to accessing our  personal health information  and the industry is listening.

Keep in mind that you are the “master of your destiny”  and “captain of your ship” when it comes to assuring you receive the Right Care, from the Right People in the Right Place at the Right Time. Self-knowledge and System-Knowledge are your keys to success.

Best summarized by Cynthia Fisher the founding angel of ViaCord at the end of the morning session: “Patients are bound to institutions that have the keys to their data and are expected to write a blank check for services with no visibility of cost”. Passionately reflecting on the plentiful gaps in the information used to make critical health care decisions during our encounters with providers throughout the healthcare system, she said; “Healthcare Data is like a Liquid Asset; it needs to flow!”

Keep your eye on the target friends: The day when you are trusted to exercise your right to control both ownership and flow of the information that your life depends on!

Jeffrey

ONC Patient’s and Families 

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

 

 

Waking to Trump: Healthcare is the least of our problems.

 Untangled Health was created to illustrate confusion in US health policy and give myself a place to vent my frustrations as just one more American caught in the routine of “Stay, Stay, Stay, Staying Alive”. The last eleven days have reordered my priorities. Since 1979 I have been fixed-on-fixing the vulnerable people using your health care system then as I was having my morning coffee today I saw a note from a LinkedIn Friend Maria K Todd MHA PhD. She was describing her inability to create words of sufficient magnitude to describe how she was feeling since the change of administrations. I  looked inside and emotions spilled-forth with the following imagery of life, family and purpose.

 

 

 

 

 

 

Waking to Trump (click here for trip to the Cheshire Cat’s den)

I wake:Breathless, exhausted,fearful,powerless; lost: A stranger in a strange land: Who are these men? My hackles are up and I can’t remember the dream: Something about a red-haired, bright bulbous nose dude with the stink of vodka on his breath screaming “WRONG”!

Waking each morning to the same reality. Memories of 50 years attending to diabetes; age ten; being told I might be blind and lose my feet if I didn’t care for myself. Memories of what it “took” to take CARE of myself; sometimes feeling ashamed to borrow money for insulin . Experiencing life on track Zero then again on Track number Ten. Attaching myself to groups of “loving-others”: finding the barriers to “well-being” and removing them; one-person-at-a-time.

Signs of my disease pointing to the Fall of my life: then Seizing 2008 with an army of friends and moving NC to the Blue as we were “tailed by skinheads” and protected by the FBI. Wondering if this is what my father felt as he was beaten up by classmates calling him “Stinky Saul the Jew Boy”; When his name changed from Halbstein to Harris so his family could keep their business. Choosing to put life on the line in WWII, he went on to live a life of patriotism he died an honorable man. One recognized for his contributions in our Space Race; Father of the Titan II Rocket.

Staring at his penciled drawing of the completed rocket, complete with team signatures : I hear his voice; shouting loudly to reject any form of bigotry. I miss his presence and the smell of his after-shave that day in July 1969 when he rescued me from the “Darker Side of America”; bar-fly’s and deviates and bourbon breath…the Department of Social Services and my fantastic Pop chased them away. There are reasons to keep the children in focus for what they inherit is their ability to thrive in the safe-space we leave behind.

I miss you “Saul Halbstein” remembering you in your prime; the Saturn V booster rockets on their test stands “shaking the windows from our home” ; hand on my shoulder, “have no fear Jeff; were going to the moon”. 

If you are out their Pop, the joke is on you. Not a believer; you now gaze down at a country you could barely recognize: Save the memories of your childhood, the War and the 1960s.

Now I know why you were still angry when you died. When you own best friend accused you of being another “New York Jew” ; broke your heart and left your side. Those last weeks of your life in December 2015 you kept reminding me of the forthcoming debate; you seemed to believe it was extremely important; you spoke of the “transparent man” who was in the next hospital room. You called him “Mr. Deal” and warning me about his ties to the bad guys. Were you by chance having a premonition?

I asked you today if I should publish this. Then the mailman came delivering an empathy card for your death:  One-Year-Late

My Pops in his prime!

Teaching others to teach others

Missing Pop

 

Why it is impossible to measure the relative risk of immigration associated crime.

Just need to cite some data that are objective. Many are telling me the nice family next door that 1) “don’t speak english” and 2) “are probably illegal aliens” are threatening my safety!

Immigration and Crime: Assessing a Conflicted Issue

 

YIKES!

 

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

Time to pull the sheet out from underneath healthcare in America. In one step. Eliminate Insurance, Medicare, Government Programs, and see what we come up with. Please leave a note on my grave as to the outcome.

someone-to-watch

Thank you friends from LinkedIn today. Those discussing our frustration and describing a need to sit down and discuss the disaster that was and the disaster that will be.

Without action that-is!

Rephrased: My friend states our Medical system is far to complicated and polluted with bad ideas to resolve through a bunch of silo business meetings of silo organizations who define for us consumers exactly what health is, what we need to consume to maintain it and how much we should pay!

My point was to provoke: Strictly because I have similar judgments. I recently have seminar to senior men on functional decline over life for avg American male. Then overlay of possible interventions and services through death. Then described business layer and regulatory layer.
Your point Bruce Pisetzner is precisely why we need to define the pain for all stakeholders. When I say “stakeholder” I include consumers from all socio-economic classes as well as the professionals who treat them and the “business opportunities” created between 1965 and today that supposedly state a clear value added to the system of care.
Spent my career sketching iterations of your shell games. It seems to me: and I hold a straw-man judgment; that 1) as a country we have no agreement on what “health”is e.g. functional status, emotional status, absence of disease, bio-psychosocial well being etc. Far too much room to allow a free-market enterprise to explode without revisiting what is necessary to achieve healthy population goals.
Then of course we have the employer – employee entanglement.
Then of course the Government – Defined Benefit issue.
As patient with chronic disease, provider – admin acute care for 8, provider-admin post acute for 10, HIT product architect for 10 and community healthcare integration consultant for 10; predictive analyst for 8: I have watched the money flow. Oh how I have watched the money flow. Some even into my pocket. $25K a year out to stay alive and well with diabetes.
Perhaps it is time we all tell the truth. Insurance company, Large Employers, Small Employers, Provider Types, Patient Types and so on.

I created this blog post on the fly but thought it important to get out here now!

cropped-stcroix-jeff.pngsevere retinopathy

An advocate gets busy while every politician and “talking head” takes credit for healthcare model ideas published long ago.

Reconciling data in my six health portals

Reconciling data in my six health portals

I watched Barbara Starfield again last night. She passed away in 2011 but it seamed as though she was sitting in my living room telling me everything will be alright but many of us will never get our way. Barbara spent several decades studying the characteristics of health systems all over the world. Her final conclusions were simple and easy to implement as long as social agreements were made between consumers of healthcare services and their providers. The contract (sort of) is that my primary care doctor will be available when needed if I promise to contact his or her office before going to the ER for an earache or other non-emergent condition; my doctor also agrees to follow my care as I transition through life stages and address all mental and physical health conditions as they arise by assuring I connect with the correct specialist if required. The specialists in return are in constant contact with my primary care doctor so the primary care clinic is coordinating continuous and comprehensive care and reviewing all interactions between myself and other medical environments. Like I said earlier this week. Someone to watch over me. I first learned of Dr. Starfield in 2001 and followed her publications. Funny, she was never accepted to sit on any best-practice boards but the scientific community considered her work to be spectacular in terms of statistical approach and quality. In other words, she looked for the null hypothesis also.

Again…concerns over repeal and replace.

Some more diatribe with hope at sarcastic humor is written for you below. Please follow through to the end as I pasted a really cool graphic pointing you to a new society of consumers and professionals that might fix the system over the long run.

The conversation doesn’t stop at my dinner table, on my phone, through IM or Facebook. It seems as though my popularity index took a healthy bump after November 8th, 2016. I wish I could be happy about the reasons for the traffic.
“Jeff, you are on Medicare are you concerned?”

Well yes; you see, as we become older the likelihood of needing assistance from case managers, specialists, short stays in skilled nursing or rehabilitation facilities increases. Same with home health services which is always the preferred place to recover from the self-inflicted fractured hip that occurred while my masculine ego informed me of my capacity to clean out my gutters.
One of the most important changes to the clinical language coming from Obamacare is the right for all patients cared for by primary care doctors with Medicare contracts to receive “Coordinated, Comprehensive Care”. Lately you might have heard the terms: “Patient Centered Care” or “Medical Home”. You probably heard President Elect Trump mention “Patient Centered” or a new commercial by Humana presented by a handsome young doctor stating that Humana’s system of Patient Centered Care is superior because of their capacity to coordinate your care within their “medical community”. Then you will watch a local conservative pundit state: “those stupid narrow networks tried through Obamacare didn’t work: here is a toast to repeal and replace.
This stuff cracks me up for the same proponents of patient centered care realize that closely collaborating narrow networks can provide you with clinical personnel that understand your needs better than anyone else! In fact, they have the same attributes of a Patient Centered Care Team using a single medical record and plan of care to increase safety and minimize mistakes. Yet you will hear no one (perhaps save me and a few of us that are tired of scraping the poop off our boots) tell you that the words Patient Centered, Narrow Network, Accountable Outcomes, Value Added Payment, Medical Homes, and all other terms implying a tightly coordinated, error free clinical team surrounding all patients are not original concepts. In fact, they are in place in many of our successful neighbor nations who provide universal enrollment and have always demonstrated lower reliance on emergency room services for basic medicine, better health outcomes and no difference in treatment effectiveness for cancer, diabetes, cardiovascular disease and other leading causes of premature mortality. Our own CMS (The Centers for Medicare and Medicaid Services) have published the policy here July 2016:
So all of a sudden the administration of 2017 will be using terminology invented by others to describe care models that work after years of academic surveillance by healthcare policy analysists and already written into The Patient Protection Affordable Care Act or what the opponents call “Obama-Care”.
My prediction is we will keep the new payment systems for coordinated care and chronic disease care management. However, the credit for the success will fall under a new Trump label. My fears is that the same three insurance companies comprising the oligopoly of payers for American Healthcare will recoup their lost profits of mandated care without premium inflation for the chronically ill by shifting the premiums higher for those with pre-existing conditions. So here is another question from the week:
“Jeff, what will I do now I couldn’t get covered because of my history of cancer before the ACA?” “What if “Trump-care” requires coverage for pre-existing illnesses but allows insurance companies to include the illness in the premium pricing model? “ My response to this question was “not sure, my cost in the NC High Risk Insurance Pool for my diabetes prior to Obamacare was $1200.00 per month not including co-pays. Today it is $350.00.
More on Patient Centered Care AKA Medical Homes AKA Integrated Care AKA Chronic Illness Care.
I discussed the integrated care model and its payment adjustments to my Men’s group on Thursday night as they requested a primer on planning for their last ten years of life. Their hope was that our system of care had evolved and they would not have to lose their homes to cover the long-term care charges. Many of the guys in my group neglected to buy long term care insurance when they were young and healthy, had since suffered a chronic disease diagnosis and episode of treatment and no longer qualified for long term care insurance. They could however place $10 K per month into an account to pre-pay up to one year of long term care. This is what my father did: In 2006 he entered into a contract with a transitional care organization. He paid them $350,000 for full access to assisted living and long term care until his death. They also allowed him to live in the attached apartment complex for independent seniors for an additional rent of $3200 per month including one meal per day. Not a bad deal eh? Oh yeah…one more oversight: My friends ; all retired upper middle class professionals had no idea that Medicare didn’t pay for long term custodial care either in home or inpatient facility.
Now, like I said the other day, I am a bit tired of shouting the truth to those who were unfortunate enough to buy into the following promise: “Oh we will have the most wonderful healthcare system in the world” and “We promise to repeal the expensive policies and replace with something better.
We were on our way folks: The biggest mistake, President Obama’s team was denied the necessary Medicaid expansion for ALL not SOME States by our supreme courts. If you don’t understand the math I will be pleased to describe it in another column. Basically when the folks that would have had access to Medicaid don’t receive the insurance they still consume services. The loss of revenue winds up on the balance sheets of hospitals and providers and they respond by increasing their cost per service. The insurance companies pay more and your premiums increase. So… my neighbors policy (55 year old male) in NC costs $11,000 per year. The very same policy in New Hampshire where they expanded Medicaid costs $5,500 per year. As Mr. Obama leaves keep in mind that the rate of increase in health costs since the inception of Obama Care is the lowest it has been in 40 years.
Somehow, someway; we need to cover everybody. If we do not we cannot cover the losses incurred in the private sector without the Magical Thinking that has been sold you for so many decade. Hide the losses, get others to pay for the losses through modest increases in cost of living and blame the doctors, and hospitals who give away more free care than you could ever imagine.
What would happen if our incredible consumer driven internet harnessed the decision support technology that we use daily on Amazon and instantly brings the right service to you when needed should you or a loved one become ill? What if we harnessed IBM Watson to make the diagnosis thereby reducing error rates and reducing unnecessary utilization of expensive diagnostic procedures?
What if we didn’t need insurance companies any more to assess population risk and perform preauthorization services while we waited for our new medication?
Since we have all of the data connecting lifestyle, culture, nutrition, infection and the human genome can anyone appreciate where we are headed with our capacity to discover the cause of disease and effect of treatment? This is not decades from now my friends; it is within the reach of our children’s lifetime. I have wonderful friends with incredible scientific minds that are creating open source technologies to accomplish human collaboration like humankind has never witnessed. The only barrier to their success is a loss of priority to cure disease, increase well-being and expand the functional-years of human life.
Or…we can keep these technologies secret, forget those we have developed through the natural sequestration of competing private enterprise and traditional silo thinking. If this is where we are headed then the best investment to assure a painless end of life if you are not surrounded by humanitarian friends is my undying support for the second amendment. If you catch my drift.

Check out Right Care Folks!

Right Care Now

Right Care Now

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