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.

The Third Rail

I'm glad I'm not a politician, so I can speak the facts without getting booted out of my job. President Obama has rightly focused the country on Health Care, but the issues under debate are not the ones that will cure our woes. My problem with Mr. Obama's plan is that it doesn't touch the real issues. Getting people insured is a relatively safe political issue. Getting an industry up to modern communication standards and information sharing is a relatively safe issue. So I'd like to touch the third rail--managing Health Care costs and who pays for them.

Sure, it would be much better if we were all insured at a fair price. Believe me, I know how difficult that is. When I left Corporate America to start this company, and tried to get insurance, I was flatly turned down by three major carriers because of pre-existing conditions. Through months of perseverance, I was able to find some high-risk pools (even though my issues are not terminal nor do they involve hospitalization). For my family of four, we would have to pay $1800/month with a $12,000 deductible. That's $32,000 a year before any insurance kicks in. Its a pretty clear example of why many people are uninsured, or can't afford to give their employees health insurance.

And yes, our ability to take care of ourselves and the ones we love will improve dramatically with access to our own health information, and improved communication with providers. That's why we started Axial.

So fair insurance and health connectivity are important issues, but they are the tip of the iceberg. Here is the real problem.

A picture's worth a thousand words, so here it is:

This is the cost of our health care year by year, according to the Department of Health and Human Services in their 2007 report.

This data, is two years old, so now our costs are well over $2 trillion dollars per annum. The slope of the curve is pretty scary, isn't it? Especially when you consider that we rank 37th in Health Care effectiveness in the world, according to the World Health Organization.

And while having all people insured is important, it won't significantly drive the costs down. It is true the Emergency Room Visits are the most expensive types of visits, and what uninsured tend to use, but sending not emergency cases to Urgent Care facilities will still not dent this curve.

So what needs to be done?

First, we need to recognize the mathematical facts. Medicare in its current form for everyone over age 65 cannot be supported by our tax base. On average, a Medicare patient has 3.3 times as many medical expenses as a non-Medicare patient. Why? Simply because they are older, and more things go wrong as you age. 80% of your lifetime health care expenses happen the last two years of your life, and in this country on average, that means around 80 years old. So for fifteen years for each citizen, the tax base is paying for more of a patient's likely health care costs than that person had in the whole first 65 years of their life. Unless our working tax base grows at a rate we've never seen in all of US history, we will add to the deficit at an ever increasing rate.

We live longer, but with more disease, but have never changed the age at which people are eligible for Medicare. We need to increase the eligibility age to the point where there is a reasonable divide between benefits start and life expectancy. When Social Security started under FDR, benefits kicked in at age 65. Guess what the average life expectancy was? 64.

Secondly, while Medicare should provide a good floor for basic health care, it cannot possibly cover all expenses. If a 91 year old man or woman wants a hip replacement instead of a walker or wheelchair, should the taxpayers pay for it? Of course not, you may say--until its your parents and you see their misery. Multiply that scenario millions of times, and then you see the problem.

We need to start a system much like 401-Ks for Health Care savings. Medicare should provide the safety net, not full service care. We should all expect, as we do for retirement, that our medical costs should go up, and we can choose to receive baseline care or that for which we have saved.

The current cost controls squeeze the doctors--the ones providing the care. The reimbursement rates for Medicaid are so low that most doctors will not accept Medicaid. The same is starting to be true for Medicare. Well, you might ask, why can't the doctor take their Medicare, and bill them for the difference of their charges? Great question! But by law, the doctors cannot bill any additional amount. Why not?

Price transparency coupled with the doctors being able to set their own rates and collect the differences between insurance reimbursement and their bills would go a long way to settling supply and demand. Let's take two doctors. One is John Hopkins trained and has an impeccable surgical record as a neurosurgeon, with high survival rates, short hospital stays, and low post-care costs. The other doctor is a mediocre surgeon, with longer hospital stays, and an uneven recovery rate. Would you pay more for one of these surgeons than the other? You bet! But Medicare would pay the same.

Lest you think doctors are getting rich, you should know that most doctors are on a downwardly mobile path, unless they do cosmetic surgery or some other process not covered by insurance. The general reimbursement rate for a primary care physician or pediatrician is $30 a visit in the Research Triangle, and pretty similar in other major metropolitan areas. That's before they pay their staff, rent, or medical malpractice. Pediatricians have to see 30 patients a day to break even! 40 patients a day will earn them about $100,000, not exactly the bonuses in question at Citicorp.

Think its better for surgeons? Well, it depends on whether the see Medicare and Medicaid patients. At the time of this writing, a highly skilled neurosurgeon, gets reimbursed $600 to remove a brain tumor by Medicaid-- a 4-6 hour process for which he had to train 14 years post college. I just paid more than that to get new brake rotors and pads in my car. That will not even cover his cost of renting the operating room. For Medicare, that number is closer to $1000, but still slightly above break-even.

We need to empower our primary care system, which is decimated, by reimbursing more, not less. Right now, at best they are a triage team, because in eight minutes, the average time they can spend with a patient, what can you really find out about a patient? Unless you've got the flu or measles, they will need to send you to a specialist. Make time for the doctors to discuss all the issues, so less specialist care is needed. Make time to establish the fundamentals of good health, including diet and exercise. Reimburse Physicians assistants and nurses to discuss these preventative issues with patients.

People do get sick, very sick, and deserve compassionate and appropriate medical attention. But right now, we citizens get penalized very little if we lead an unhealthy lifestyle-overweight and lack of exercise. Your insurance premiums go up if you smoke, but that's it.

The slope of this curve will never change unless we take some drastic actions. Start benefits at a later age. Medicare should provide a floor, not total coverage for patients health. Citizens should have incentives to save, like 401-Ks to supplement Health Savings. Let free pricing prevail--along with price transparency and doctor's records. Focus on good health, not treating symptoms.

If I were a politician, I would be electrocuted by now; but if things are going to change, we all need to know the facts and be brutally honest about what needs to change.

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