Untangled Health

Consumers Unite To Drive The Changes We Need

Jeff

Chronic Illness Mastery Surviving and Thriving in a system ranked 50/55 by the Bloomberg Health Efficiency Index. (2016) I am a thirty five year healthcare industry career professional with a notable leadership track-record in patient-centered, population-focused care. My mission at this stage of my life is to assist the chronically ill with the personal health management skills necessary to assure wellbeing and safe experiences when encountering both private and public healthcare systems.

A Patients Gripe with Donald Traumatizing the sick and suffering: How the President of the United States intentionally injured the health and well-being of the Chronically Ill.

Thanks Donald: As if the chronically ill don’t have enough to worry about, you have successfully created a barrier to our choice of health care plans.

Each year those of us who live with chronic illness spend weeks researching the plans made available to us through the Affordable Care (Obamacare) website Healthcare. Gov. We spend hours upon hours calculating our drug costs, assuring our primary care doctors are in a plan or specialty care networks that provide services such as retinal surgery, dialysis, exercise prescription, nutrition and counseling to persons with diabetes are available to the consumer. Many of us are in-line for Medicare within the next decade or so. For example, a person with diabetes or cardiovascular disease or in many cases BOTH is gainfully employed and adding value to society throughout his or her life. These folks –like myself-  live with a chronic progressive illness and spend much of their time managing their health to avert the need for urgent care services and maximize their well-being. Then… years into the illness, they find themselves taken leave of their full-time work due to the complications associated with the disease. For me, it was neuropathy at age 58 after nearly fifty years of successful self-management of diabetes. Once on the roles of Medicare our health care expense  (of interest to you I am sure) is directly related to the quality of the interdisciplinary care team that supports us in our daily self management. In the mid to late stages of chronic illness we have spent years cultivating our resources to maximize our health, functional status and quality of life. This occurs before Medicare and for many of us who went uninsured or under-insured prior to Obamacare we have had several years to bring these providers into our Care-Team and stabilize our decline in health status. As each enrollment period rolls-by we peruse the plans available to us and select those that support the providers we have selected or are intending to add to our network if certain problems arise (example, diabetic retinopathy).In case you didn’t know and I am sure you didn’t the chronically ill account for over 50% of the Medicare Budget yet represent only 10% or less of the population depending on whose statistics you are referencing.Here are some interesting statistics regarding the cost of care for Medicare Enrollees straight out of YOUR CMS Chartbook! So here we are, stressed out and trying to figure out where to get the time to select the health plan, we need to reduce the complications from the chronic illnesses we live with. All of this having direct relationship to the resources we will consume when we are transitioning to Medicare. Perhaps you will be long out of office by the time our cost hits the taxpayers back pocket and it isn’t an issue to you. Your political desire to be seen as a barrier to the ACA is more important. It can’t be a financial issue, Donald for any ten Medicare Patients with Chronic illness who experience significant progression of their illness as a result of choosing the wrong insurance plans during your presidency will far outspend any savings you introduced through cutting access to the Healthcare.Gov website. NPR article on Navigator Frustration

 

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?

 

Right Care Action Week Event

Untangledhealth.com conducted a Right Care Action Week Cafe for The Right Care Alliance on October 19th at Elder Path Raleigh; an MKP.org Men’s Group. We discussed, engaged, educated and empowered this group of elders to master their future health through selecting providers and institutions that offer  the highest quality, highest value services with proven integration of clinical services throughout the continuum of care.  I am excited to see this community of men step forward to model active consumerism in Health Care and dedication to teaching their peers the methods consumers can use to evaluate their regional resources. 

Topics covered included the Self Advocacy Process, Selection of High Quality Health Facilities and Providers, The Five Wishes, Transitional Care Hazard Avoidance, Medication Cost and many others. As always, UntangledHeath.com’s desire is to teach patients to advocate for themselves and their families.

We look forward to working with the Right Care Alliance in the future.

The pictures below include slides from our discussion. I will be recording the entire presentation soon!

Thumbs UP and Thumbs DOWN, WAY DOWN
“Ah, to be one and twenty in the blush of my youth”: A high five to the anti ACA crowd. I hope, but doubt the American People will understand the impact of proposed “new service payment products” on their own health as they age and the health of those who become ill or have a chronic illness. You know; the impact of smaller populations managed under risk contracts dubbed “Health Plans” where: if you are not sick AND if you are not old AND if you do not smoke YOU get a policy for $150 per month!
I am a proponent of the health care collaborative when the governance of these entities assures continuing care at a mutually agreed on affordable price to all consumers in the collaborative regardless of “Health Status”.
Oh the trouble we weave into our future with short-sighted decisions. I call upon the American Diabetes Association, The American Cancer Society, The American Heart Association and others to stand up and describe the possibilities should these changes occur without assessment of the impact on access to care, cost of care and quality of care as it relates to those who actually consume health care services.
Perhaps this is an opportunity for a public and private sector offering. A Medicare for all and a private sector alternative. What that leaves us then is a taxpayer bail-out of the industry for catastrophe; In this case; it is a predictable catastrophe. However, such changes leave behind an opportunity for high profit in the privatized, low consumption, population health care financing product and a large burden to those paying for the 10% of our society that consumes 70% of the services. “Us”.

A Diabetic in Puerto Rico calls out for insulin : Shame on us…

Normal Retina                                                        Severe Diabetic Retinopathy

 


 

I am angry.

Listening to a diabetic in Puerto Rico plead for an insulin delivery this week brought back remembrance of the body pain, insatiable thirst and intractable nausea I experienced when I was broke in 1974 and had to borrow money for medication as I hitch hiked to California to live with my brother Bruce. Feeling helpless I received a $75.00 wire transfer in the nick of time. Fortunately I had a loving brother and Western Express. Thank G-d for a wonderful primary care Doc that taught me to reverse DKA on my own when I was only 13 years old. I can’t describe the misery of Diabetic ketoacidosis with sufficient magnitude. Imagine dying of thirst.

I do not understand where our Army is. It seems we have infinite resources to drop special forces into any part of the world where there is a threat to The American Way. Yet in the time of Trump, and in the Time if Bush I heard the call of The Great Oz.. “We are doing a fabulous job”  or  “Great job Brownie”. Here lies evidence of my claim that we are own our own in this great country: The Country that used to promise opportunity and someone to watch over us when we fall upon hard times. Go ahead, call me a snow-flake…Then walk a mike in my shoes and tell me again “to suck it up”.

Today I am ashamed of the indifferent , arrogant attitude of Donald J Trump and want our Global Friends to know that we know how to care for our own, we have the resources to care for our own and that the Real America is currently on the mat in a twelve round championship fight against Master Blaster. Let me be clear; Master Blaster doesn’t run this part of town!

The retinal photo above right is an actual photo of a person with diabetes who has not had access to primary care. She lived in a rural area of North Carolina, had no insurance and died one year after this photo was taken. She was in her thirties. Medication, a treatment plan and adequate nutrition go a long way.

Hey DJT, stop worrying about what people think of you and send some helicopters in with the supplies that are piled up a few miles of the shores of Puerto Rico.

Awe Nuts! I am really pissed.

Health Care Consumer Empowerment

 

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

 

 

 

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

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

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

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

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

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

Jeffrey

ONC Patient’s and Families 

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

patient logo

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

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

 

My suggestions:

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

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

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

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

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

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

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

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

Warmth to all of my friends along the way.

Jeffrey 

Here are link to Magic

 

The Onslow Magic Project for clinical guidelines

 

 

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

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

 

 

 

 

 

 

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

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

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

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

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

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

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

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

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

My Pops in his prime!

Teaching others to teach others

Missing Pop

 

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

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

Immigration and Crime: Assessing a Conflicted Issue

 

YIKES!