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.
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.