My Health Care Obsession

My interest in making sure we Americans solve the health care problem in the US isn't altruistic, its personal.

I was one of those "lucky" Americans.  I had employer sponsored health insurance.  I live in one of the health epicenters of the nation, the Raleigh Durham area, having access to some of the best doctors in the world.  I was well educated, generally ate well and yes, I could have exercised more, but had a very busy lifestyle.

Then I got sick.  Its been a real eye-opener into a system that while loaded with kind caring, well intentioned and educated people, is broken, broken, broken.

My first issue was diagnostic.  No one could figure out what was wrong with me.  I am hardly unique.  I watched missed and untimely diagnoses almost kill my brother (liver cancer) and mother(NMS, a non-infectious cousin of tuberculosis).  So three out of five of immediate family have fallen into the diagnostic abyss.

Here were my symptoms.  Overwhelming fatigue from a person that routinely led an up and at 'em lifestyle.  Back pain.  Shooting neck pain.  Numbness in limbs periodically, sometimes lasting for days.  Slow-rolling migraine headaches that would get triggered by something as trivial as an employee wearing aftershave, and take three days to peak with a blinding flash of pain that would make me so dizzy I had to lie down on the spot.  This would be followed by 24 hours of adrenalin style heart pumping.  Muscle aches everywhere--I felt like I had a fever.  Inability to sleep.  Weight loss followed by unexplained weight gain.  Stroke-like symptoms where I couldn't remember simple words, and what was in my head would come out differently when I spoke.

I went to my primary care physician, a lovely lady who tried very hard to figure out what was wrong with me.  She took my symptoms very seriously, as she knew I wasn't a complainer.  She did the basic tests, and other than slightly low white blood cell counts, they were normal.  So off I went to a series of specialists.  I saw an allergist, a gastroenterologist, an orthopedic doctor, a cardiologist, a neurologist, a neurosurgeon (I did have a herniated cervical disc, but my neurosurgeon was sure  that while painful,  the disc wasn't causing the overall issues) an opthomologist, and a rheumatologist.  Eight doctors in all, two whom are personal friends.  Wrote my medical information every time, by hand, on a sheet of paper attached to a clipboard.  Wrote down my medications, probably inconsistently.  New tests every time.  Litttle or no communications amongst the doctors, other than two who were my personal friends. Every form would ask who my primary care physician was.  She received reports from two of the seven. When the tests showed nothing, that was it.  "What should I do?"  I would beg tearfully.  No next steps, no suggestions, usually a prescription to try a different pain medication or anti-inflammatory.  I did get a prescription for physical therapy from the neurosurgeon, and that did prove to be important and helpful.  No accountability.

I don't mean to sound so dispassionate.  In addition to being exhausted, and in pain, wondering if I was losing my mind as well.  For the first time in my very successful work career, I couldn't keep up the pace of constant travel, long hours and global management, which was almost as scary as whatever was wrong with me.  My family life went down the tube, as I would lay on the couch after dinner, which I couldn't eat, and stare into space.   "Mom, what's wrong with you?  You are no fun anymore," complained my eleven year old.  She was right.

My primary care physician tried her best, she did.  Since every time I came back from a specialist empty handed, I would start over on the appointment trail.  She gave me medications to treat the symptoms, such as pain and sleep loss, which turned out to  by sanity savers.    As a new patient, it would take six to twelve weeks to get an appointment with the specialists.   Where possible, she would call the doctor's office and try and get me moved up. Nonetheless, it was a year by the time all the doctors had seen me.  I should add, as it is relevant to what's wrong in health in America, my primary care physician was ultimately asked to leave her practice by the new big company provider that now managed their practice.  After twenty five years in medicine, she wasn't seeing enough patients, and god-forbid, spending too much time with them!

I breathed a huge sigh or relief when the MS tests came up negative, because that had been my greatest private fear.  But now I was also ready to give up, though barely functioning, I resigned myself to living half-a-life.  Doctor number eight, the rheumatologist was different.  She didn't do any blood or urine tests, but she did give me a physical exam, and then asked, "So you mean, what's wrong with you other than your Fibromyalgia?"  Excuse me, could you back up a minute?  "You know you have Fibromylagia, don't you?"  Well, no, I didn't.  She packed me off with a pamphlet of some support groups, renewed my prescriptions (it turns our my primary care physician, in treating my symptoms, had prescribed the standard medications for fibromyalgia, seratonin inhibitors and anti-inflammatories).  In another blog, I'll let you know just how useless that was, but later.

You can't sum up a year of your life, your fears, aches and pains in a few paragraphs, but through it all, I was convinced, there has to be a better way.  Why can't these doctors read each others notes and see each others tests?  Why don't they actually do like we do in business, and schedule a conference call, or at least start a mail chain?  I didn't know it at the time, but in the midst of my frustration, Axial Project was born.

When Connecting Our Country's Health IT, Let's Take Our Own Hippocratic Oath to "Do No Harm"

Every day, meetings and hearings take place in Washington as lawmakers, insurers, vendors to the medical community, hospitals, and occasionally practicing doctors debate the best way to computerize and connect our HealthCare Economy. The stakes are gigantic, to be sure. At $2.6 trillion dollars a year and 15% of GDP, Health Care is our nation's biggest industry, and one of the least effective. Ranked 37th place in efficacy by the World Health Organization on simple measurements like lifespan and infant mortality, we are spending a lot and not getting much. We still have some of the best doctors, hospitals, research and treatment centers in the world, to be sure, but those are bright spots in an ineffective system.

The good news is that no one disputes the system is broken. It doesn't work for anyone. Doctors, nurses, hospitals, insurers, employers and patients are all unhappy with the status quo. But why did it get this way? And what can we do to change it?

The first part of the Obama plan to fix the health economy revolves around Health IT. The American Recovery Act of 2009 has set aside $36B ($20B net) to compensate doctors who show "meaningful use" of electronic health records from "certified" systems. The sooner practitioners comply (2011 is the earliest date), the more of an incentive a doctor is eligible for -- somewhere in the range of $40k-$60k. Those words in bold have created a flurry of lobbying, testimony and opinions that cover a range of possibilities from the grandiose (every doctor will have a fully implemented system that checks everything in the patient's record, and comments as to its appropriateness) to the very simple -- the ability to keep an electronic file on a patient and submit prescriptions -- electronically.

There's even a website http://www.meaningfuluse.org/, courtesy of the Association of Medical Directors of Information Systems (not sure who they are), where vendor after vendor keeps praising and posting on "meaningful use". Ironically, despite the impassioned posts, the poll on the professional's website asks the following question

Peer Insight Poll

ARRA is most likely to result in: Spending $20B without significant benefit Transform healthcare to be higher quality and cost effective

Guess what! Two-thirds of the IT professionals polled answered "A"...they believe the government will spend $20B without significant benefit. The very people that will likely benefit from the money don't think it will have significant impact on healthcare.

So, being America, I'd like to get my opinion in here as well. It's not too late to make this money a down payment on a system that works. So for those of you setting policy on this subject, be it Capitol Hill, HITSP, the Department of Health and Human Services, please all vow to take your own Hippocratic Oath and "do no harm". The reality is that somewhere between 5-9% of American doctors have adopted some form of clinical electronic health systems, meaning a whopping 91% haven't. So we need to get real about what is possible, and focus on a standard that most doctors can comply with and benefits the doctor /patient relationship in the process.

1) First, we need to focus on finishing and clarifying the standards needed to code and deploy these systems. While huge movements have been made, especially in the last three years through a variety of organizations, there are still too many standards and definitions, and inconsistencies between them. Whittle down the list that matters, focusing on the basics, the Continuity of Care Document and those elements like lab reports, images, and medicines that populate the documents. Networks work so well because the standards are simple, but exacting. The same can't be said for Health IT standards.

2) Second - take all "non-essential" requirements off the certification list for the time being. The hardest part about technology use is adoption, and feature bloat will make it nearly impossible for doctors and their staffs to adopt some of the more ambitious ideas. Right now, the average doctor in America sees a patient for 8 minutes. And if they are typing into a keyboard, speaking notes into a mike, or doing anything else, they are not paying attention to you! How many of you can type or do data input of any sort while really paying attention to someone else? If any of you have doctors that use tablets today, you know they don't look you in the eye, and are paying attention to the keyboard. The already too short patient-doctor interaction will be less effective, thus breaking the "do no harm" rule.

3) Interoperability is what really matters, so make sure the systems talk to each other (see standards, above). Can the labs results get to the doctors in a timely fashion with notification? Can the patient be sent to a specialist with their complete profile and tests included? Can the pharmacy get a legible prescription? Can the patient look up their own information? These connections will help deliver quality care with lower error rates and less redundancy.

4) Privacy and Security should be restored to the system. Just as importantly as having their own information, can a patient see who has looked at their information? Can they grant requests and deny requests to share health information? Right now, the first thing we all do when we go to the doctor is sign away our privacy, when we agree to let the doctor and the health insurer get information as necessary to pay the claim. We have no idea where the information goes. Insurer collect information to calibrate rate (read-raise) and employers, who self-insure have the ability to find out who is driving their cost up when someone has a premature baby, or a spouse with cancer. I have heard horror stories where parents have had their prescription medicine usage used against them in custody cases (against the law, yes, but the penalties are so weak, it happens)

5) Knowledge is power, so share it appropriately. Since the average American has to work until the end of March to pay their insurance and health care costs, they do want to take care of themselves. Doctors don't like patients cruising the internet, since there is a lot of misleading information out there. So suggest good information, links and organizations where a patient can educate themselves. Let them know the likely costs of their treatment, and if costs can be lowered through better diet, exercise and sticking to their medical regime.

6) Improve the quality of the time with the doctor by prior check-in. One of the simplest things you can do with the computer is let the patients fill out their clipboard information at home before the appointment. How many of you can't remember the dosage you are taking of your medications when you are sitting in the doctor's office? Or how often do you forget a symptom or an issue due to lack of time or proper organization? This not only gives the patient a chance to make sure they are presenting all their information, but a chance for the doctor to skim the information and know your issues so the time together can be spent discussing them.

Health IT interoperability is a baseline on which a better healthcare system can be built. But make sure the foundation is strong before too much weight is added on.

Joanne Rohde