Untangled Health

Consumers Unite To Drive The Changes We Need

Tag: Clinical Informatics

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

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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

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

Hello Darkness My Old Friend…

I am witnessing an illogical social rage emerge that “if we are not steadfast to our principles of tolerance and acceptance” could ignite into a civil crisis even greater than what I (we) witnessed in the 60s and early 70s.
The content displayed on the Internet is usually present for a single purpose: to sell an idea.
So now we have evidence of dishonesty and amoral behavior.
As I chase material down to its source I find frequently that the information is genuine but stretched beyond its context. Meaning: a video purporting to expose poor security architecture of a 10 year old vote tabulation computer is released from a blog that claims a vast conspiracy to undermine our election process. However, the machine tested was studied through “real scientific procedure” by Stanford years ago and found to be defective, thereby causing the vendor to lose its contracts with election management authority’s .
The video published within the last few days had a single intent: convince the public that we have a crisis in our voting apparatus and a probable conspiracy.
On the same blog the moderator claims our support of foreigners in need is far greater than our effort to support those of us on Social Security. ” How can our Government support thousands of Syrian refugees when it can not give a raise to Soc. Security recipients!”
These words are meant to do nothing but divide us.
On another blog I find the video of a silly man embarrassing himself by making petty comments regarding his power over women. The guy was 59 years old and behaving like an adolescent braggart. Ask me if I care. I think I am intelligent enough to not consider him suitable for public office through listening to his speech alone; let alone some silly dialog he had with a Hollywood “Child” .
Now Most of my friends and I are not content with our choices in this election cycle. However, we know we can survive another 4 years waiting for another leader to emerge if we vote for Sec. Clinton.
But the generation below me: the folks that didn’t experience the Cold War, Vietnam, Students being shot on campus, the pictures in Time of beautiful men hanging from trees by their neck throughout the South. The beginning of and final failure of the war on drugs, Project Apollo.
They can’ t seem to realize that corruption is everywhere but reflected by genuine love and collaborative effort in the very same moment.
The candidates in our election today are simply warning lights on our social dashboard : bringing our attention to our fear of powerlessness, loss of faith in humanity and capacity to understand how each of us is perfectly imperfect. From George Washington to Whoever wins this election ; all of our leaders , all of our heroes have nasty moments along their life-path; They were and are human also.
I think it is time to silence our voices, lay down our pens and video recording devices and sit down for a discussion. Perhaps a discussion that will illuminate our fears, doubts, insecurities, desires, hopes and dreams. Through this work we might once again find our commonalities and work together to re-form our nation.
We are broken…..I think, but not irreparable.

Enjoy

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.

NC General Assembly Run’s Amuck

Here is what you can plan on seeing frequently in NC Emergency Departments as people with diabetes lose contact with the guidance of their primary care medical homes.
Dying a piece at a time diabetic vascular disease

This letter is to my neighbors in North Carolina, all of you:

I am presently at the Patient Centered Primary Care Collaborative, a national forum of Fortune 500 companies such as IBM, Anthem WellPoint, United Healthcare; Aetna; and clinical groups such as The American Academy of Family Physicians and others. My point is: This is a non-partisan, multiple perspective group of America’s best thinkers in business and industry that convened in 2006 to identify what works with regard to delivery mechanisms, payment reform and consumer engagement.

I am a member of PCPCC and serve as a co-chair on their health information technology committee and adviser to the Patient-Family and Consumers group. Yesterday I was a panel member discussing both topics. Why, because of my experience with my healthcare (diabetes for 48 years) and work with the folks that founded the current system.
After this meeting I will be attending the Colorado Patient Centered Primary Care Collaborative meeting at 1:00 PM this afternoon.

I am interested in Colorado’s perspective since they adopted North Carolina’s successful program: North Carolina Community Care Network which tethers Medicaid Patients to a Medical Home. Our program in NC has been evolving for twenty years: Starting as a simple demonstration and ultimately proving its capacity to manage a diverse population of patients coming through different payers including Medicare, Medicaid and Health-Choice. After joining what has become a national movement to bring patients closer to their primary care physicians Colorado’s pilot initiative has demonstrated reduced-cost per enrollee and improvements in health outcomes. The return on investment is well north of 2:1.

As these programs expand they will be using organizational ideas that originated among the talented North Carolina physicians and allied health professionals in the between 1994 and the present-day. NC tax-payers and the private sector joined forces; offering financial commitment and support staff to ramp-up the rate of adoption of Medical Home processes. Their support of Community Care is due to their effectiveness. This work is now being replicated across the country and is thought to be pivotal to the reduction in cost and the much-needed improvement in National Healthcare Outcomes.

Unfortunately, my neighbors and I in NC will no longer receive the benefit of our State’s recognized excellence in primary care delivery as the NC General Assembly has elected to ignore the desire of the public and take the next step toward the ‘outsourcing’ of Medicaid to a national HMO. “Sorry folks we have been hijacked by gorilla corporate tactics to influence a 3 trillion-dollar industry.”

I must inform you of your success and the magnitude of abandonment.

Here are the facts as described above:

NC has demonstrated wonderful cost savings with their community designed care coordination and case management programs. You may hear them referred to as Community Care of North Carolina. They are composed of 14 different not-for profit organizations assigned the task of providing care while controlling inflation in Medicaid. I worked with the team on assembling programs that would provide unbiased expert evaluation on their health and cost outcomes, those that become national benchmarks.

Your communities responded to the call for participation in Medicaid reform. Now, all of us that thought we were included have been abandoned: And believe it or not: Our Governor is one of the good guys: After he put a great deal of effort into learning about what works and listening to the feedback of local healthcare experts he supported the implementation of Accountable Care Organizations and the continued use of Community Care of NC as the service providers.

How do I know this? I had coffee with Fortune 100 executives yesterday who have been trying to help the Governor and NC Physician networks. I cannot disclose anything other than this. The detail is disgusting and speaks to issues that most in our country worked through in the 1970s. Suffice it to say that your elected officials were able to locate an HMO plan outside of NC that is able to tell a wonderful story. Since the legislature (as members have directly admitted to me) do not understand healthcare data and population analysis they have hired consultants to assist. These consultants pale in comparison to the experts that have recently met with Governor McCrory in an attempt to save the State of the Art system currently in place.

All systems of care need improvement today. Clinics and providers are not all the same. That said, we have plenty of successful models in NC to draw from.

Regardless of the following truths your General Assembly has decided to dispose with advice from the recognized experts in the field.

The Nations’s  industrial leaders are adopting your healthcare services design because they are confident that it works.

• Our State is a respected leader across the USA through the success of its bilateral Medicaid Managed Care model that evolved through your feedback and the constant vigilance on regional measures of cost benefit and cost efficiency.
• You have been abandoned while distracted by a conservative argument for small Federal government. The influence from outside our State is present and sizable.
• Through the invocation of States rights, our GA turned down sufficient funding to care for an extra 400,000 poor people in this State. Our uninsured would be insured otherwise and hundreds of jobs would be created to perform the needed individual health assessments, identification of clinical disorders and implementation of a course of treatment.
• You are handing over the health management of the woman next door: You know the one who works two jobs to feed her family to an external, antiquated delivery concept that demonstrates only two things:
o Reduced cost
o Reduction in health and wellness with loss of access to primary and specialty care.

Since no-one could imagine our legislature retreating from previous commitments I thought it might be a good idea to take this year and advance the treatment of diabetics by concentrating on our well-known problems with untreated diabetic eye disease among the poor. I was counting on the Community Care Networks to take our patients, established a collaborating group of eye doctors and created the program outline for a Diabetes Eyesight Preservation Initiative.

Due to the changes in attitude and changes in latitude expressed by the GA last week a program to treat diabetics at high risk for becoming blind at a cost roughly 50% of local hospital charges is being placed on hold. I can not ask my ophthalmology friends to plan on Medicaid reimbursement with the knowledge that the payers could change overnight. Two bad I guess for several hundred people who have been unable to receive specialty eye care.

I hope my readers understand what I am saying. I have difficulty describing such a complex and corrupt industry to my friends and family. The General Assembly has knowingly ignored your desire and taken action that will –in the eyes of our nations most published professionals likely do harm to the poor.

Additional note one day later:

I have been informed by my endocrinologist that the practice will no longer accept NC Medicaid. This is due to the uncertainty of the GA final budget.

I am retired today and have no reason to distort the truth. I am fortunate to have wonderful people in my life outside of NC who validate or challenge my conclusions. Without my friends I would question my sanity and think I was caught in the twilight zone.
\I am willing to work with others toward a system that is faithful to its original design requirement: Provide room for the poor and middle class (now the same, check your retirement account) to succeed in a country of opportunity. Have we lost it?

If anyone would like to publish detail, simple facts to expose the reality do not hesitate to contact me. I have data and information regarding this topic that will stand in court and my family has no fear to work with others in an attempt to expose the material prior to the 2014 election.

New Bumper Sticker Idea: NC General Assembly : Perfecting Legal Genocide

 

 

Allscripts abandons physicians in North Carolina

I read an article today published in the News and Observer Raleigh NC: “Docs feel a little sting over records” was written by John Murawski on Sunday November 4, 2012! Two days before our presidential election he passively critiques the Obama administration for ‘forcing doctors to purchase electronic health record systems. Little is mentioned regarding the history of the legislation or improvements we will all experience through the adoption of interoperable health records. The most important comment comes later in the article where Mr. Murawski informs the reader that the well-known Allscripts EMR vendor is abandoning a product sold to numerous physicians in our State; forcing them to replace and re-deploy with another vendor. The product they are abandoning is only a few years old and the tragedy of the increased costs and inefficiencies will be felt by our physicians and us patients.

 

I retired this year after a 32 year career in America’s healthcare system. My work took me through an amazing series of learning experiences as a technologist, therapist and program manager for people suffering with chronic disease and health informatics specialist these last fifteen years. My work in healthcare was stimulated by my experience as a person with diabetes since the age of ten. As a patient I wanted to work in the system which had nurtured me into a place of independence as a young child.

With the advent of prospective payment and HMOs in 1980 I remember borrowing money to purchase glucose monitoring strips from physician friends. These were not covered at the time but the evidence had been published regarding the importance of blood sugar control. Through generous friends I was able to purchase one of the first insulin pumps in 1984. With a salary of $22,000 I would never have been able to select an advanced therapy. The outcome…well after all these years I have had some problems and have just now become  disabled but I had a wonderful, productive career and look forward to many more as a community ‘helper’.

My concern is that articles focusing on the negative experiences of advances in healthcare policy (taken out of context) are easily used to strengthen political and economic arguments to steer the uninformed citizen. I would like to clarify some facts regarding electronic health records for the readers. I am qualified to offer these as I entered this field in 1997 along with a rehabilitation physician to design a community wide record with clinical decision support to offer better care and safety for the elderly.

We patented the web-native technology in 2001, sold the company and I moved to North Carolina to assist the State with the design and deployment of a single system used to coordinate the care for the entire Medicaid population. Through the collaborative efforts of fourteen networks –now known as Community Care, they began using this system in 2002. As patients migrated or changed providers their care managers were able efficiently share care plans, save the State millions of dollars through prevention of duplicative testing, reductions in pharmaceutical expense and hospitalization or emergency room costs. The most important thing to remember about this experiment is the fact that it was collaborative and placed patient safety and quality of care first. The financial achievements were a natural extension of well over 3000 physicians working together to re-engineer the management of healthcare for less fortunate individuals. Today, the Community Care Physicians use a modernized version of the system to evaluate patient and system outcomes. North Carolina should be very proud to have led the way with the use of health information technology and community re-engineering to improve the health of its citizens.

Herein lays the rub. Now that I am out I can make observations and judgments about the industry that can be verified with my-own collection of source data, e-mails, and project-notes. I can attest to the fact that the commercial industry is now flooding the gates with products that were engineered with loose standards if any at all and are quickly revising these products or integrating them now that the source of payment is guaranteed. When my physician friend, the lead architect from Lotus Development and myself worked on the first Care-System health record in 1997 we hoped to make a fortune like any red-blooded American Entrepreneur. The difference is that our primary purpose in the beginning was entirely clinical wherein we were attempting to repair a system that was broken by industrial fragmentation and loss of communication between professional care providers, patients, families, insurance companies and employers. We borrowed family money and at times paid our salaries with our credit cards. When we needed ‘big capital’ we went to the Venture Capital world and sold our knowledge and three years’ work to the highest bidder. In the end, the company was acquired for $2.5M. I received $25K, the founders a few bucks more and the loans were repaid  The acquiring company integrated the knowledge and technology of several small acquisitions and sold their entire operation to a large insurance interest for $465M.  The sale was obviously an internal ‘good buddy deal’ as the valuation was grossly inflated over the projected sales of $40M in product. Anyone caring to research M&A from 2000-2003 will find the transaction. These deals have served to multiply the true cost of healthcare in the USA and the only benefit in my opinion was to the venture capitalists and top-tier management. Everyone has their own definition of success and justification for behavior I suppose… but I wish they would keep it isolated to discretionary purchases of unessential products and services.

 

I find myself discouraged at the end of my career. I have now worked in both commercial and public sectors and have come to the conclusion that the very nature of the free-market; where each individual acts in his or her self-interest; simply does not fit in medicine. The following two experiences in the insurance sector and a local county health department along the coast of NC summarize it all:

 

  • From a vice president of a company insuring 20M lives in NYC in 2007 during a closed meeting: 
    •  “We do not use combined quality of care indicators like the Dartmouth Atlas, we care about return on share-holder equity only”.
  • From a public health, county education supervisor in 2012:
    • “I think you are asking me to evaluate my program…this is above my pay-grade”.
  • Heck, I will throw in another from the director of marketing in one of the many electronic health record company’s prior to a presentation to a potential customer.
    • “Tell me what smoke and mirror story I should use, heck I can sell anything” 

 

 

 

 

 

 

The public should know that the legislation mandating electronic health records started with the Bush Administration. In fact…if we trace the health reform language back to the 1940s we will find attempts to adopt universal coverage from the Truman and Nixon administrations. We have never allowed this to occur since we unleashed the natural instinct for self-preservation into our code of ethics regarding how Americans get health treatment in 1910. It is naïve to assume that the IT product manufacturers  will consider the needs of the sick: As a species we simply have not evolved to that point. I have only witnessed compassionate behavior in this business sector two times in my career.

So now, we have good intention: A reform act which provides economic stimulus to adopt technology that improves clinical outcomes reduces cost and increases patient safety. We even developed and continue to revise standards which force mechanisms for data exchange between competitors. Yet, since the industry waited over a decade to solve the problems that would arise from security issues, technical complexity and a complete lack of matched financial incentives we are burdened with the cost of replacing systems purchased by physicians and clinics within the last five years. Ask me about the 6000 clinical records lost in 2009 from a poorly led electronic medical record system implementation when an understaffed Federally Qualified Health Center was abandoned by an unethical vendor.

 

The article in the News and Observer points to a well-known vendor of physician medical records. Allscripts is a dominant force in our State and they have now abandoned one of their acquired products forcing physicians to replace it. Shame on them…

 

I hope we can see this as a human problem as opposed to political incompatibility. We are the folks that engineered and enjoy the fruits of the free market.  Along with the fruits come the problems of greed and poor planning to return quick reward to the investors. In the end, we as consumers pay a hefty price yet we do not hold the correct people accountable. Here is a novel idea let’s work together to figure out a solution as the consumers of medical services: Please do not think that the healthcare industry, schools of public health, government or industrial think-tanks will solve this for your children. This is probably the best opportunity for self-examination as a society that will emerge in the next fifty years.

Consumers… step up to the plate and state your needs; also please visit and join the “Society for Participatory Medicine” on the web!

 

With respect for all, Jeffrey Harris Raleigh, NC.

 

 

 

A National Message: Your Physician is Waiting To Help You Untangle Your Own Healthcare

 

The prevalence of incorrect information in healthcare records becomes frighteningly clear when a new doctor asks you how long you have had the brain-tumor that you didn’t know about! (Personal experience last year, luckily I was able to inform her of the fact that I did not have a brain tumor)

This presentation clearly illustrates the importance of patient and family familiarity with their physician’s medical record notes.

For those of us who have difficulty remembering numerous encounters with the medical profession, the names of our medications and the procedures we have required; we now have an opportunity to both improve our care and prevent hazardous errors.

I anticipate the maturation of secure communication and documentation technology across the web over the last decade will significantly reduce morbidity and mortality once consumers weave the electronic health record process into their lives to the degree they now engage social media services. I encourage all of the patients I work with to become part of the solution through self-advocacy and engaging with on-line organizations such as #The Society for Participatory Medicine.

Please enjoy the video below and this new Forbes post: