Wednesday, January 28, 2009

American Healthcare "Works great as long as you are not sick"

January 29, 2009

Okay, five days and counting: Today’s topic medication safety and other rants
Tomorrow is pre-op testing, I was called by the hospital and told to arrive early and be sure to bring a medication list with dosage information.
I asked the representative if the hospital had a web registration and personal health record in which I could upload data. I was told “we are not quite that state of the art yet”. Oh-well, I suppose my paws can scribble a few hundred more lines of redundant information that exists in at least ten electronic medical record and registration systems across Raleigh NC. I have been experimenting with Microsoft’s Health Vault but find that, where it is an excellent technology, the market is not ready with interfaces to the myriad of systems that exist in a single ‘system of care’. This could be addressed with a Federal or State based system which serves as a public utility for personal health information. Unfortunately the market drivers are not in place and various privacy regulations get in the way. Funny how HIPAA, which was designed to standardize information transfer, increase transparency of data for patient safety and enforce security has now created such costly social barriers. We can thank our litigious society, advertisers of legal services seen every three minutes on nightly television and the use of personal information to screen for pre-existing illnesses for the barrier. Too bad, our species has such a history of poor integrity. HAVE YOU BEEN EXPOSED TO ASBESTOS, TAKEN ARTHRITIS MEDICATION, BURNED YOURSELF WITH HOT COFFEE? CALL THE OFFICES OF JOHN SUESTHEMALL FOR A FREE CONSULTATION YOU POOR VICTIM OF AMERICAN BUSINESS CULTURE!
So here are some issues with personal health information that are threatening our safety. I will use myself as an example. Go ahead deny me medical coverage or employment. I’ll just call Attorney Suesthemall.
I have diabetes, chronic hepatitis c (what do you expect I grew up in the 60s and 70s) and post traumatic stress disorder. No big deal, with the advent of modern medicine and personal investment in my health I have done remarkably well! That said, I am on eight maintenance medications which influence a wide variety of biochemical systems. I can guarantee that without constant vigilance on my part, my five physicians would have no reconciliation of my medication data: For a primer on patient safety check out The Institute for Healthcare Improvement. This organization is on the forefront of protecting US PATIENTS and improving our healthcare system.
So, tomorrow I will re-write my medications onto a paper form for the fifth time since I started down this treatment path. Each time I have hand-written my meds, someone has transcribed my data into a medical record and verified (to varying levels of reproducibility) with the patient (ME). When I have provided typed lists, my providers have still required that I complete their paperwork (I imagine the legal system has something to do with this).
By the way, SureScripts-RxHub RxHub has a great solution for medication transparency; I just hope it is affordable to the institutions and providers who need the data at the point of care. They have records on over one hundred million of us that could save our lives. The last time I looked they charged $1.00 per medication history report to an admitting hospital, not sure if it is still the same price.
To keep my records straight I have a few choices as a patient:
Have an incredible memory like all baby-boomers
Make sure one of my relatives has an incredible memory (doubtful)
Keep a reliable notebook and remember where I put it: Best suggestion for folks with chronic disease who prefer pencil and parchment.
Keep a record on my computer with reliable back-ups and pointers to back-up files on my hard-drives, CDs and Flash Media.
Choose one of four personal health records that have been provided by my constantly changing healthcare business environment. For example: I have a record with two payers, one pharmacy benefits group and one beta software that I have been testing for a friend.
On to creating my advanced directive in-case I forget “not to take the drug prescribed by my PCP that is suspended in an aspirin compound”.
I am going to be fine folks, but this is freaking hysterical since I can point to systems in other nations that are more effective at reducing variance in medical outcomes.

On with the crapshoot with carefully loaded dice in the morning…….


January 28, 2998

As they used to say on Hill Street Blues "Be careful out there".

This year, I find myself disabled with degenerative spinal disease and am awaiting surgery on Tuesday February 3rd. Since I have little else to do, I thought I would archive my experiences on this blog and also post some videos of the adventure.

As I write this stuff, keep in mind that I have spent numerous years working for my cause: universal coverage for all Americans and the deployment of a universal personal health record to prevent errors in clinical judgment and facilitate a smooth transition for all patients between systems of care.

The industry and our politicians are working on this dream, but the issues are complex and numerous so I pray we see it in time for our children’s generation. Many -who have something to gain e.g. politically or financially will tell you that what we need is only a few years away. Where this might be technically feasible; I challenge such enthusiasm with the very real social issues of: alignment of financial incentives between providers and payers and patients and employers, the revision of laws which prohibit access to critical health information e.g. mental health diagnosis. The reluctance of people to adopt new workflows. The current population of burned out primary healthcare providers and their lack of collaborative relationship with insurance companies.

We have a long way to go folks so let’s get started with my 'case' and try to find some humor in the message!

Within the last few weeks I became disabled from neck pain, had and MRI done and found out that I have severe degenerative disease with compression of my spinal cord. I am scheduled for surgery (three level cervical fusion) on Tuesday AM at Rex.

To say I am not frightened would be an outright lie; I know way to much about medical misadventures. That said, I am having a humorous time chronicling my experience and attempts to make sure that 1) no-one kills me due to misinformation and 2) no-one overcharges me due to misinformation. Do you see a theme emerging?

Let’s see

I am in excruciating pain so…
I go to an orthopedist who schedules me for PT and MRI

I go to a see a clinician friend who suggests three neurosurgeons

I struggle to determine if one of the neurosurgeons suggested is in my new health plan.

After research I settle on a doc by searching Pub-Med for clinical outcome info and looking around the country for published quality indicators.

I AM SURPRISED BY the variance in success rates between physicians and facilities

The neurosurgeon I select is one of the best in the area (1500 cases, 97% success, .001% infection)

The neurosurgeon will be working on the part of my anatomy that connects brain to the rest of body (seems like a big deal to me)

The neurosurgeon soothes me with his ego and data (He clearly states that he is one of the best)

The neurosurgeon seems to only consider my neck anatomy when establishing his patients identity (guess this is neck centered vs. patient centered)

The neurosurgeon asked me to make sure I received clearance for cardiovascular risks and my insulin pump (diabetes). I thought they did this but I guess this is a reflection of the new ‘consumer directed and patient centered healthcare system’.

I wonder what folks do that don’t understand the definition of cardiovascular risk?

The surgeons office called for a $1000 deposit even though I have no deductible, co-pay or co-insurance.

I was called by the endocrinologist’s office who I need to clear me for surgery and they gave me 24 hours to come up with insurance info or they were canceling my appointment because “they had a long waiting list”

I called endocrinologist office manager and give her insurance info. While I am at it I ask if they do means testing and adjust fees for self-pay. She states that patients receive a flat 20% discount. I ask if they see Medicaid patients (huge diabetes prevalence rate) and am politely told “NO”. I find myself wondering how people of lesser means get their diabetes care and what happens if they need an endocrinology clearance for surgery? Then I realize that my surgeon probably won’t treat people of lesser means since he already asked me for a down-payment on a procedure for which he is contracted 100% to payer.

My primary care doctor is worried about someone following me closely in the hospital as I have diabetes and other chronic conditions so she writes a stern letter to the surgical team inspiring confidence in this patient.

I ask my primary care doctor to prescribe an aspirin free narcotic since I can’t take aspirin due to potential bleeding complications (I read this is a handout given to me by neurosurgeon and wonder what folks do if they can't read).

I go to CVS to get some codeine and the pharmacist blankly stares and tells me “we don’t have that”. I ask where to get it and she continues to stare at me with a flat affect. I am concerned that she might be having a seizure but take care of myself by suggesting she call another pharmacy which she politely does.

I drive across town to get the codeine, an extremely inexpensive light-duty narcotic that seems to be quite rare since the invention of stronger, more-costly agents that have created a population of new patients for the rehab and detox centers (oxycontin etc).

Tonight I am assembling a living will
I have also arranged for a friend (RN) to monitor me during the hospital stay.

And on it goes……….six days and counting………


Robert said...

This is an amazing undertaking, man! I'm so glad you decided to share your experiences and insights with the world.

Halbstein said...

Thanks Robert!

Anonymous said...

Jeff...I love you for putting your heart right out there. Your dry wit sucked the air out of the room here :-)

You've likely seen this: and while the NHS in the UK is far from perfect it saved my mothers life, and at no cost and with no struggle of "what value a life" that I sense in our country here..

gcameron said...

Hey bro, I was so glad to get the call that the surgery went well. I've intentionally not called so as to allow you and Carol some healing time, but I have you in my thoughts and prayers.
Thank you for posting this and allowing the world to share in your journey.
I love you and miss you both.