Untangled Health

Consumers Unite To Drive The Changes We Need

Category: Medical Errors

A reason we all need someone to watch over us when hospitalized!

As discussed in several posts between December 2015 and today I call upon healthcare consumers to “Learn the System”. The Service Excellence, scores, JCAHO ratings and next door neighbor reviews of your hospital mean little if you are a statistic. Infection Control, Readmission Rates and other measures of quality are available at: Medicare. Gov | Hospital Compare! Please write me if you have questions. Feel free to ask about the numerous Therapeutic Misadventures I have witnessed that will never show on a quality report.
The Trump Administration is doing everything it can to cut the legs out from the transparency tools that were put in place under the direction of the Obama Administration. These tools are all you have to evaluate the quality and safety of your institutions and providers.
Consumers step up and demand the care you deserve – AND PAY FOR!

Medicare Penalizes Group Of 751 Hospitals For Patient Injuries

The federal government Thursday lowered a year’s worth of Medicare payments to 751 hospitals to penalize them for having the highest rates of patient injuries.

More than half also were punished last year through the penalty, which was created by the Affordable Care Act and began four years ago. The program is designed as a financial incentive for hospitals to avoid infections and other mishaps, such as blood clots and bedsores.

Get The Data: See All 751 Hospitals Penalized

Is Your Hospital On The List?

Get the dataHere are the 751 hospitals hit with safety penalties for 2018.

The penalties again fell heavily on teaching hospitals, although less than before. A third of them were punished this year, a Kaiser Health News analysis of the penalties found. Last year, the penalty was levied on nearly half of the nation’s teaching hospitals.

The 115 penalized academic medical centers this year include Denver Health Medical Center, Grady Memorial Hospital in Atlanta, The Mount Sinai Hospital in New York City, Northwestern Memorial Hospital in Chicago, Stanford Health Care hospitals in California and the University of California-San Francisco (UCSF) Medical Center, according to federal records.

“Academic medical centers serve patients with more-complex conditions who are at greater risk of hospital-acquired infections (HAIs) compared to community health care providers,” Stanford Health Care said in a written statement. “Hospitals with a high rate of immunocompromised patients will always seem to have higher HAIs.”

Hospitals that treat large proportions of low-income people also were fined more than hospitals with a more affluent patient base, the analysis found. About a third of those safety-net hospitals were penalized, roughly the same as last year.

Can you believe this one?

My Overstressed Physician (Prior Authorizations, Referrals, Stress, Prescription Assistance Programs, Electonic Health Records and More)

The following video covers just one aspect of my concerns regarding the infringement on Patient Centered Care by the “Business of Medicine”. I have reflected in the past about the cumbersome “Business Process Centered” components of health care delivery that prevent our providers (Doctor, Nurses, Technicians, Therapists ETC.) from focusing on the “Big Picture”. What I am referring to are the dimensions of health that require thorough assessment and attention to detail for the treating provider to accurately judge what is happening in our body, draft a treatment plan and execute the orders. Right Care to me is my team’s full understanding of my biology, culture, mental health and physical health needs, the social roles I play in my community and the support available in my community when it is necessary for me to stay healthy and productive.

During my visits to my doctor the processes’ of assessment, diagnosis, planning, intervention and monitoring are interlinked and any disruption will present a barrier and possibly introduce an error in treatment or missed opportunity to cure a silent condition. These missed opportunities to improve our health are often referred to as Co-missions or Omissions in care. Co-missions occur when our medications interact and cause an exacerbation of an existing illness or cause a new illness to occur. An example might be the treatment of a person with Diabetes who is taking insulin with a Beta-blocking drug such as Metoprolol. This might cause hypoglycemic Unawareness  and the patient will not be aware of a low blood sugar. An example of an Omission in Care  is when a patient is unable to continue taking a medication. The lack of evidence of prescription refills in the patient medical record might create and alert for the doctor to review, but one cannot assume that this is always the case. Beyond being aware of the missed refill the doctor or the clinics Care Coordinators should follow-up with the patient to determine the reason for non-compliance with the patients care-plan. In America financial reasons often prevent us from being able to adhere to our medication regimen and the answer to the dilemma can be as simple as contacting the drug manufacturer and applying for funds through a Prescription Assistance Program. The #partnership for Prescription Assistance is an organization that will help those with financial resource issues. So, what do you do if your doctor doesn’t have the time to spend educating you to look out for hypoglycemic unawareness, refer you to a Prescription Assistance Program or get transportation to the clinic each month for your periodic check of your blood clotting time? Should all of us be self-sufficient with these skills? I suppose in a perfect world this might be the case, but I certainly wouldn’t place this responsibility on the average lower to middle class patient today. We are far too busy just making ends meet and in many cases our health suffers.

Electronic Health Records were our great hope for unburdening the provider and the clinic staff from clerical activities that are required in the day-to-day management of a population of patients. The average primary care provider often has 2000 patients unless they are a concierge practice; which the average Joe or Jame cannot afford. Your referral to the laboratory for routine blood sampling frequently requires the doctor to link the appropriate diagnosis with the lab test or the chart will not close out after the visit and the order will not be communicated to the lab  performing your test. Today, I watched my doctor and his “documentation specialist” carefully navigate several screens in the EMR as the doctor ordered various labs and cross linked them to my problem list. These processes make a lot of sense when they relate to care quality. For example, you do not want a doctor to order tests that are not going to increase his or her knowledge of what’s ailing you.  However, in the cases I see today; and I see a lot since I am a person with multiple chronic illnesses: My doctor is dancing to the tune of the Insurance Company and looking over his back to make sure he isn’t over-utilizing or mis-utilizing his privilege to order expensive diagnostic procedures: When I see my doctor stressed out,  rushing through and missing pieces of his exam: I start to fret that he will leave his present employment and I will lose yet another good primary care physician (I have lost three in the last five years for these reasons).

So my doctor is overwhelmed with filling in the correct fields in a health record to avoid penalties from his administration. My quality of care is declining. The burden in my opinion is a caused by an over-complicated system created by folks interested in the possibilities of Big Data AND the residual business process requirements of a Managed Care Business Model that no longer is valid since our doctors today come well prepared to make high quality decisions based on the published  best practices emerging from the literature accompanied by embedded decision support in their information systems; or has someone been fibbing about what the technology does for us?

Are you willing to step up and work with your doctor to define and deliver the Right Care by the Right People, at the Right Time, in the Right Place?


Old, Broken and Pleading for Help

September 3,2016
Location: Large Urban Emergency Department
Advertising Claims: Patient-Centered Comprehensive Care
Source: Staff

Staff report: Hospital is rapidly expanding to form an integrated delivery network. Claims of under-staffing in ER. Claims that patient volume frequently exceeds capacity without placing hospital ER on diversion so patients are sent to other local facilities to receive more timely care. Non-clinical Patient Access Reps often find themselves advocating for patients and families when prolonged suffering is noted. Patient Access Reps are also required to collect co-pays from patients when discharged or admitted.

Case Report:
91 year-old woman, alert and oriented brought to ER by EMS. Resident in local “high-end” nursing home fell to ground from standing position landing on face and hands. Injury includes compound fracture of wrist and bruises to face.
Patient registered, insurance verified, triage nurse assessed and patient sent to X-ray without physician assessment, medication or other treatment. Patient complained of severe pain 8 over 10 level.
Three hours later the Patient Access Rep. was walking by patients room and overheard patient weeping and asking for help “please help it hurts !”
Patient Access Rep. returned to nursing station and brought situation to the attention of clinical staff. Staff responded “The patient was in radiology, was returned an hour ago and it is not your place as non-clinical staff to audit our processes. Patient Access Rep. responded:”As a patient-centered organization I thought we were all accountable for patient and family experience. This patient clams she is in excruciating pain will someone please help.
The staff of several doctors and nurses returned a blank stare and talked among themselves for 15 minutes prior to attending to the patients needs.

Unfortunately this is a common experience for patients as their direct care givers are stretched thinner and thinner while hospitals expand through the acquisition of physician practices; health information technology and higher profit diagnostic and elective surgical purposes.

God bless the over-worked direct care staff.

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.

Self-Interest as the cornerstone of failure in Americas Healthcare System

I fear we will lose  the opportunity to re-think the legislative changes required to assure the success of the Affordable Care Act. Instead it might simply die. My reasoning is clear. The original work lost all structural integrity in terms of economic sustainability. This was the outcome of supporters of the legislation sacrificing so many critical features to corporate interests.

I am exhausted and have few words left.  Why do we cling to fears, doubts and insecurities that were issues of the  Cold War.  “Oh we can’t consider universal coverage as this is a Socialist construct.

If we look round us, all civilized nations figured out a long time ago that universal coverage is mandatory for the economics of health-care to be self-sustaining.  Here is my response to a recent petition. I hope my readers will take it seriously.

Sue, I have decided to discontinue any business that UntangledHealth.com has with Staples. Then again, I only purchase two computers per year and will not make a dent in their bottom line. At the same time it is important for all to understand that this has less to do with the legality of the situation than the moral standards we choose to live by in America.We have a wonderful opportunity through a free enterprise system to create huge personal wealth. Personal, now translates to corporations as individuals. Self-Interest stimulates wonderful innovation yet unless closely monitored for “intent” will consume a society in short order.



Plenty of historical examples: eg: other empires. For those active in the E-Patient Movement or Patient, Family, Community Centered  Medical Home Movement or E-Health Movement you have a responsibility to weigh-in on the economic issues in health-care. Please add your wisdom, we need you.   JFH

Mostashari, policy committee take critical look at CommonWell | Healthcare IT News

Please read my comments. This material is important for consumers to reflect upon. Basically, the lack of partnership between healthcare IT vendors on the creation of information exchange and data protection standards places you at risk. 1) for leaking protected personal information and possible identity theft and 2) having wasted your tax dollar on the promises of a data exchange technologythat would decrease the likelihood of your suffering the effects of a therapeutic mistake.

As it stands now Oligopolies are forming which will make your data inaccessible unless it exists in the hands of big corporate America. Beyond that, it appears data are already leaking into commercial mailing lists.

Mostashari, policy committee take critical look at CommonWell | Healthcare IT News.

Duke Medicine offers to ‘show interest in my life-goals’ for $1500.00 per year!


My medical stuff for a 3 day trip!

My medical stuff for a 3 day trip!

February 2013

Last month my father called and complained of being ‘dumped by his primary care physician of 25 years unless he was able to pay an additional $2000.00 per year for concierge services. He said: “Jeff, Dr. Xxx’s nurse called and said that this new program would assure 30 minute follow-up appointments and 60 minute annual evaluations along with a 24 hour, 7 day per week personal communication with the primary care physicians in the practice. I told dad to pay the fee since he could afford it. With disgust, my 84 year-old father and former career NASA aerospace engineer told his Dr. to stick it where the sun doesn’t shine.

Then; on a personal level: I started visiting the Duke Integrative Primary Care program. They have made wonderful changes to my treatment after uncovering several unknown nutritional and biochemical deficiencies. Unfortunately, they tell me today that they will be pleased to accept my commercial insurance but no Medicaid and no Medicare. They also now require that I pay $1500 per year in addition as a membership to the practice as they are limiting the practice size to 600 patients. The administrative RN tells me that this is the only way I can get the services one would expect from a ‘medical home’ such as appointments of sufficient length to “ADDRESS MY LIFE GOALS”. With a smile, the RN says: “Well, with your background Jeff, you know that it is impossible to do without additional funding”. My response was to illuminate (with colorful words) the purpose and methodology of practice re-design when implementing Medical Homes. I find it hysterical that Duke itself claims to be a leader in their own primary care system in the evolution of Medical Home concepts and adherence to Meaningful Use Criteria. I find it disgusting that their ‘offering’ of this concierge service is really nothing more than what over 3000 physicians have been providing through NC Medicaid’s Community Care of North Carolina contract for a decade. I find it nauseating that we are continuing to squeeze profit from a dwindling consumer base and refusing services which are noted to be ‘best practice’ to the poor. People are people I suppose…and subject to greed.
I am writing this as I leave the Duke Integrative Primary Care clinic today, probably for the last time. These folks diagnosed my metabolic issues and low testosterone: I feel better. If I did not ask for the appointment with my “10 minute visit primary care doctor” she would have never referred me to the clinic. I will now return to her and when I am able to afford it I will return for further investigation and treatment of the many factors that decrease my health related quality of life.

March 2013

Note: I returned to my PCP yesterday March 15th, 2013:

She was angry that I had been placed on testosterone since she had worked me up last year for prostatitis. Had she read the notes in the wonderful e-HR that inter-operates with only duke physicians she would have noted that prostatitis is now ruled out, neurogenic bladder is the new dx and that Dukes own specialty physicians had started testosterone replacement with the intention of having primary care pick up the prescription writing responsibility.

She stated she would not write the prescription.

My next move was to walk her through the notes of the physicians she had referred my case to. I then told her that the Duke Integrative Medical practice would charge me $1500 per year if I needed to return to them for the prescription and that I would leave Duke and her primary care practice if she couldn’t address this with the other doctors on my health team.
My doctor says: “Well why would you leave, what is it that you expect?”
I followed with: “Dr. XXX; I would expect that you would have read the consulting notes prior to entering the exam room so we would not wind up in this tense situation where you are asking me to run all over the locality to describe your directions to my specialists as far as who prescribes what” ”Beyond that, I find your employer ‘Duke Primary Care’ attempting to drive my SSDI money as a private payment to their concierge doctors by not allowing the consulting physician to prescribe medications. In other words, he finds the chronic disease which is treatable with integrative techniques and then refers the patient to the front desk to get them enrolled with the two new primary care physicians in the concierge program.” “Furthermore, not only has this new system of care created a barrier to me getting the medications I need but it has done this by not addressing the educational issues that are clearly needed among their own medical staff.” “Oh yeah, one more thing I realize this is not your fault with the exception that you neglected to read the consult results. I believe this is due to the fact that you carry a case load of 2500 patients and become overwhelmed at times.” “Actually Duke has insulted both you and I. You call me whenever I need you and that is why I choose to be treated by your practice. In my view you have a nice start with your Medical Home right here. But your employer is selling a package wherein they differentiate the offering by noting that the concierge physicians are 1) more available and 2) interested in my ‘life goals’. I realize nothing will happen as a result of this discussion today because it relates to Duke Politics. However, if you think about it we have just touched on: Cost of Care, Quality of Care, Patient Satisfaction, Provider Satisfaction and reputation.”

She nodded, said nothing else; spent ten minutes reading my chart and looked up at me with a sad expression. She apologized for “not getting it right”: I responded with “You did not have enough information, you were not educated as to the changes in program marketing and none of this is your fault.” “I promise you that I will only take medications that are prescribed by you for chronic conditions once I return from the specialty consults. I count on you to interact with my other doctors and resolve conflicts on my medication list; but I need to trust the system of care.”
Dr. XXX of Duke and me are still together, we have agreed to how we will relate in the future and how we will survive in a patient-primary care relationship within the context of the Duke System. I think that what transpired over this last month models patient participation in medical decision making, cost control and providing feedback. I hope that my doctor stays with Duke, it seems their turn-over is quite high. Perhaps they should look at those data!

Dear Brother and Sister Patients,

You will find many physicians not agreeing with me when I state that all should have access to 100% of my health record, care plans and prescriptions. They might further disagree (for legal issues) with owning the responsibility of taking into consideration 100% of available information so may be less supportive of data exchange between electronic medical records. 

Please understand: We, that is you and I paid for a seamless ‘inter-operative healths record through ARRA-HITECH funding. Our purpose in asking for this feature was to make sure we did not fall victim to therapeutic misadventure e.g. a physician prescribing a medication that could interfere with your ‘well-being’. YOU NEED THIS as it is one issue, which we call poly-pharmacy that is responsible for well over 100,000 errors in medical practice per year. 

When your doctor gives you your visit summary which should include a problem list and medication list make sure that it correlates with other doctors in your treating team. You might just save your own life!

Trouble Across the Pond. Once again, no one to blame but everyone. Look at the entire system for your answers.

A good day

Once again my friends, any system which places organizational success in the media, executive bonus, or ridiculous ‘service excellence’ survey results over clear-cut measures of process, and medical outcomes first will lead to suffering. Suffering of patients, families…our identity?
Recently, in Raleigh NC a large hospital system has been cited for Medicare fraud (Wake Medical). As the story unfolds the CEO stated that a single mid-level manager from Patient Services changed physician’s orders to charge Medicare for multiple episodes of care as opposed to observation days only. I find the sacrifice of lower level employees horrific. I also know this to be a common behavior in the US.

These problems are systemic and global. They specifically speak to a decline in the humanity of ‘human services’.

There is a lesson in this video from across the pond.
Pay attention to the proposed Standards and compare to what we have or do not have at home.
Consumers of services (yes us patients):

Please do not accept lip service as transparent publications on safety and quality and cost are promised under the new health-reform act. Scream out for standard reporting, standard methods of measurement and reliable statistics.

Step-up and submit your ideas to the private sector : Healthcare Information Technology Optimizes Hospital Experience

Information Quest has created a $100,000 competition which solicits ideas which will optimize the in-patient experience. So…all of you e-patients, patient advocates; geek-patients; participating patients: We have opportunities to actually influence product design. If you have ideas, your submissions could be the most valuable in the market for the creation of products you actually want to use!


Comments on health information exchanges and Personal Health Records

Living with chronic disease is a lot of work! Clinical Program Manager; Enthusiastic HIT Promoter, 40+ year Diabetic, Patient Rights Activist

As you know, I have written past article regarding the value of clinical information exchange and other what are now called Health Information Technologies that are part of health care reform. Ultimately, the goal is to come up to speed with other developed nations e.g. Taiwan, Germany, The Netherlands, Great Britain (take me a few years to complete the list). Why do we want to come up to speed?

Lets see: physicians have always counted on your memory as to the medications you take daily. If you see more than one physician they do not share the data. My primary care doctor (from Duke Medicine)  recently connected to a common resource called RxHub a part of the Sure Scripts empire. When I attended my appointment yesterday she suddenly had an additional ten medications which brought much concern to her face. We immediately reconciled what I was taking and what I was not. She took me off of one medication that was contraindicated thereby decreasing my risk for a drug to drug interaction.

So you see: The technology decreases my risk of suffering a cardiac arrhythmia (funky heart beat) and decreased my cost as well as my insurance plans! I said to Dr. Seo: ” My colleagues and I dreamed of these systems fifteen years ago it’s about time! Then a tear fell from my eye…….we can be so back-words for such an advanced nation!

Here are some screen shots of my data that I have connected to a free service provided by Microsoft:  Properly titled Health Vault

Here is the Website Image

Microsoft Health Vault a great place to store and share your data based on your decisions


When you set up an account you will be able to decide who you want to share your record with so YOU CONTROL THE SECURITY.

HealthVault connects to many electronic health records being used by your doctors and hospitals

It also connects to large laboratory companies like Quest

And of course to your pharmacy records in CVS, Walgreen etc.





 Here is my file

Notice I can use various tools like diabetes management software from other vendors

Notice I select who to share my data with

Notice I create my contact list thereby creating a virtual care team.



Here is the main “patient at a glance view:


Note, any care-provider or family member I give permission to will have access to:

My conditions

Measures I am following such as A1c or Blood Pressure

Files I have uploaded or downloaded

Medication lists (more on this later in terms of value e.g. Medications and Medications filled: Think about how someone would use this info to see if you have enough money to fill your prescriptions and take them as prescribed)


Here are some sample data on myself:



These are all of the conditions that I have

You can imaging how many physicians I see!




Here are prescription data fed directly to the system from CVS


So imagine you are in a car accident and have a HealthVault emergency sign in account in your wallet. As you lose consciousness from an obvious head injury the last thing you see before waking up in the ICU is your physician and ER staff entering the data into their computer, connecting to the WEB and getting an accurate picture of your conditions, medications, procedures and contacts to call.


Or I guess you could keep trying to fit it all on a 4X4 scrap of paper in the smallest font you can create.

So that is enough for tonight. I hope it whets your appetite and gets you on the track of storing your data in the cloud. We will be doing many more pieces on this in the future.


Think I will do more on economics and politics next week.

See ya

Jeff Harris