One Thing...

In the Classic Billy Crystal Comedy, City Slickers, Billy Crystal asks Jack Palance, who plays Curly, the crusty cowboy, what his secret to a good life is. Curly answers, "The secret to a good life is one thing" and holds up an index finger...and then he dies. We never know the answer.

Similarly, in getting to better health in this country, I've been trying to figure out what the "one thing" is that this country should be doing. Figuring out this one thing is important, because we have information overload. There's too much detail, too many problems with complex inter-relations, and therefore no one can act. A 1000 page national health bill was passed, and no one but a few paid experts actually knows whats in it--though the general agreement is that it about providing more access to doctors through changing eligibility and payments; not about a healthier America.

I think I have my answer, and the one thing we should do something about is food. It keeps us alive, it gives us great comfort and enjoyment, creates common ground and cultural history, but can also make us obese, trigger all kinds of disease because of chemicals and nutritional imbalance. And obesity is the number one public health crises in America.

But back to one thing. Food is an extremely complex subject, as I learned when I was ill and actually had to research what made a truly healthy long term diet. I guarantee you the answer is neither simple, nor is what most of us do every day.

In school lunch programs, which could be a major tool in combatting obesity; there are many studies about what is wrong and how to change. But theSchool Nutrition Association, a 55,000 person professional organization whose mission is to advance good nutrition for all children, Tom Baranowski, Professor of Pediatrics Baylor College, gave the following report cards to the efforts across the nation to promote positive change.

Report Card For School Health Behavior Promotors -

IOM Committee on School Nutrition

January 28 2009

Why? Why do all the well intended, well research change efforts fail so miserably? The best answer I can come up with was provided to me in an excellent book called "Switch - How to Change When Change is Hard", by Chip and Dan Heath. Their point is that you need one thing, that motivates both your brain and your heart--and it must be simple. They cite a public health experiment in West Virginia, in one of the most obese towns in the country, to improve diet and nutrition. For years, the town has been told how to eat right, given access to community health professionals, and nothing happened. But then, two researchers found that if you wanted to cut out half the saturated fat in our country's diet, you would cut out whole milk. That's right. I suspect most of my blog readers don't drink whole milk, but most of the country does. In fact, they think its downright healthy.

So they tried an experiment in this town. They showed pictures at all the grocery stores of one glass of whole milk on the left, an equals sign, and five slices of bacon on the right. This was followed by the instructions to buy 1% or fat free milk. Guess what happened? There was a 37% increase in the purchase of lowfat/nonfat milk, that lasted beyond the experiment date. This is a huge needle move for any public policy experiment. What does this prove? According to the Heath brothers, it shows an important truth. Its not that people don't want to change, its that they don't know how; there are too many options.

So for our country, I believe the one thing is food. But we need to find our individual "one thing" that we can do for ourselves and our kids. It has to be simple and irrevocable. For me, its no processed sugar (sugar feeds my chronic fungal infection and sets off my fibromyalgia attacks). That's kind of a big one, so for your family it might be no bleached flour, or no refined oils. Eating less sugar is not a valid option--because it gives you too much wiggle room. Your one thing must be binary. I think you'll find this "one thing" goal setting does lead to change, and then you can find your next "one thing". Diets don't work because there are too many options--too much too choose, too much behavior to modify.

I would be happy if the country replicated West Virginia's experiment. Its a place to start. Curly was a very wise man....

Build It and They Will Come

It is rare in the economic history of the United States that the Federal and State Governments moves faster than the private sector. But that's what seems to be happening in the field of Health IT, especially with respect to interoperability. You may well be familiar with some of the incentive money, but probably not with what is happening at the State level--and this could affect every American's ability to access information. So read on if you want to make sure your state does the right thing.

There are two big buckets of money in ARRA set aside for Health IT. The largest, by far ($36B gross, $19B net) is for hospitals and doctors to move from paper to electronic medical systems. These incentives come at the back-end of the Health Care provider's implementation project, in the form of multipliers to the reimbursement the practice receives from Medicare or Medicaid. Hospitals are gearing up to take advantage of these incentives, as it may mean somewhere between $2-$7M per hospital. However, the average doctor will receive $40,00-$60,000 over four years, not covering the cost of most implementations. Needless to say, the doctors are lukewarm to negative about this incentive package, and aren't rushing to the door to convert their practices.

There is a smaller bucket of ARRA money that doesn't get nearly as much press coverage, but may have a much bigger bang for the buck. That is money set aside for States to build Health Information Exchanges. These would be public "backbones" that will ultimately connect all the hospitals and physicians in each State. The announcement, made by Vice President Biden, and HHS Secretary Kathleen Sebelius on August 20th, set aside $564M for the States to build Health Information Exchanges. Because of the particulars of ARRA funding, States will have to respond and build quickly. The States submitted Letters of Intent on September 17th, and have to submit grant proposals by October 14th. Then, the Federal government will announce the grant recipients by December 1st. Having managed procurement for a major private institution, this is very fast turn-around indeed.

Here's the kicker. If the States want the Federal Government to pay their whole tab, then they must have their project completed within two years. After that time, State matching funds must apply to the project. Given the in-the-red status of most States, they will hurry, hurry, hurry.

That could be great, or it could be setting the table for failed implementations. A lot will depend on whether each state adopts four basic principles outlined below. If you want your state to provide a backbone for a health information exchange, feel free to cut and paste from this blog and send this to your State's Governor. Each state applying usually sets up some kind of Authority to manage the process (in my state, it is the NC Health and Wellness Trust Fund), but that Authority will be determined by the Governor.

1) Set up the State for easy Communication with the Federal Agencies at a low price


A state's Health Information Exchange's design should mirror the National Health Information Network’s open source CONNECT design. States should not recreate the wheel. Using the CONNECT design, the State will be able to seamlessly connect with Federal Agencies such as Medicare and Medicaid, the Department of Defense and the Veterans Administration. Additionally the flexible open source design keeps medical information resident in the existing systems within doctors and physicians’ practices and avoids the need for a statewide medical database--a fear for many citizens.


2) Keep Costs Low and Improve Interoperability by Mandating the Use of Data Standards by Companies involved with Health Care Information in the State


States should promote long-term sustainability by mandating that all companies doing business with the State, including laboratories, imaging centers, hospitals, and Physician offices make their results available in the ANSI-approved standards known as HL-7 (there are other relevant standards, as well). If a system is old or a vendor does not know how to do this, then they must put their interface technology in the public domain so that third parties can convert it to industry standards. We have learned from the 200 plus HIE's that were created and not sustained that the largest cost of both building and operating exchanges is due to proprietary, point-to-point non-standard connections between legacy hospital and lab systems.


3) Plan Personal Health Information to be the Centerpiece of the Exchange



A State should design its Exchange with the patient front and center. Currently, most HIEs are business-to-business, with only 2 HIEs making data available to the patient, though many have plans. We believe the key to getting long-term health care costs down is to educate patients. American consumers are very savvy, and they will learn what they need to in order to make good life decisions. They just need the information.

In addition to the broad principals, patient-centric records specifically will help patients with complex and chronic diseases make sure that all information is getting to every doctor and practitioner involved in their care. This is particularly useful for caretakers of sick children or aging parents.



4) Design For Public Health and Research Use By Building De-Identification Functionality into The Exchange


This same data can and should be repurposed for Public Policy Health Care, tracking of illness, and demographics. Often, Public Health Data comes from some other place or project that was financed independently of the Exchange (as most states have some kind of Public Health repository but may not have a Health Information Exchange). In addition to spotting key health rends like flus, the de-identification of data can be used to find clinical trial subjects, a costly and expensive proposition for Universities, Pharmaceutical companies, and Contract Research Organizations, ultimately bringing down the cost of getting new drugs and procedures to market.

Sometimes news that doesn't make headlines really matters. This is one of those times. You can make a difference in your state as well. If all 50 States followed these simple, logical design principles, we'd all be better off.

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.