Myths and Lies in Healthcare Debate

The British Medical Journal published a letter to Senator Kerry that was from more than 100 National Health Service (NHS) health service professionals and patients that addresses some of the criticism leveled at the UK's NHS service. Titled "Setting the Record Straight about the NHS" it is worth reading in its entirety. I'm not here to suggest that we need the NHS in the US but having experienced the service as both a provider and consumer I can attest to the high level of service and the feelings of security that arise from a true catch all service that does not require the production of your money for service.

My own personal experience, coming from the fortunate position of having health insurance and good personal health and a family with few medical problems is a fear of approaching any medical facility or health care provider. It remains a mystery, much like the single sock in my dresser that never finds its pair, what the charge will be I end up paying. The idea of health insurance, given the extraordinary amount of money deducted from my pay each month would be that accessing care would cost me little over and above what I already pay in premiums. But this is almost never the case. Following the billing process and managing Explanation of Benefit statements, insurance, medical savings accounts and all the other associated tasks is almost a full time activity and is always a fight. In the tax system you need to reach a minimum outgoing of 7.5% of your Adjusted Gross Income (AGI). That might seem like a lot but each year I am often close and frequently pass this hurdle to be able to deduct anything in excess of the 7.5% of my AGI. This by the way is over and above my insurance premiums. And I consider myself lucky. I wonder how my British friends and colleagues would perceive this state of affairs. At any point in time when I do dig into the details or end up chasing a payment that has not been made I have to organize conference calls to get the insurance agent and the providers billing office on one call to agree what is missing and who needs to fix it. The Providers office does not see it as their problem - hence every time you enter their office they demand you sign a document saying you are responsible for all the costs and as a courtesy they will attempt to bill insurance on your behalf. The insurers for their part fails to deal with the provider except with your forcing the issue and any payments go through their Delay Department that seems designed to make life as difficult for everyone involved as possible. Recently I made a tactical error and agreed to pay the whole cost up front to the provider to get a discount. Suddenly the billing office had no incentive to follow up the billing to get me my insurance payment and the insurance company would not accept any "bill" or claim form me - it had to come from the provider. Heaven forbid I had a serious condition or required extended treatment or clinical visits?

So is this system working for you - I doubt it. But maybe if you started in a system where this was the norm you might not sense that this is an additional unnecessary burden and stress. For all the faults and challenges in the NHS I never feared walking into a physician office for care, treatment or preventative healthcare and screening - never!

Health insurance i nothing more than a commercial operation designed to manage the flow of money with an extra set of mouths to feed adding what some estimates put at 10 - 30% of total cost of healthcare. Is this value for money. While we are at lets crush one misconception here - dental insurance is not insurance. It's does not provide even the most basic of coverage adn the out of pocket expenses are huge even for the most basic of dental care.

With that all said moving the existing healthcare system to a new format is not going to happen. The challenge of "Getting from There to Here" was eloquently detailed by Atul Gawande in his New Yorker piece. The NHS was established on July 5, 1948 but what is lost in the mists of time is the sequence of events to reach that point:

Instead, the N.H.S. was a pragmatic outgrowth of circumstances peculiar to Britain immediately after the Second World War. The single most important moment that determined what Britain’s health-care system would look like was not any policymaker’s meeting in 1945 but the country’s declaration of war on Germany, on September 3, 1939.

The sequence of events and war time necessity created "a national Emergency Medical Service to supplement the local services" which expanded to cover essential services necessary to the population remaining int he country and dispersed by the war time bombing of cities and the returning veterans injured in the line of duty. For many groups providing free care was a necessity of the "war effort" and engaging the private system to supplement the rapidly assembled government system was an obvious step. The system was expected to be temporary but status quo had been destroyed and not least of all because the population, despite the war, had seen an improvement in the health of the population.

The medical and social services had reduced infant and adult mortality rates. Even the dental care was better. By the end of 1944, when the wartime medical service began to demobilize, the country’s citizens did not want to see it go. The private hospitals didn’t, either; they had come to depend on those government payments.

So in 1945 the concept of the NHS was really nothing more than extension of what had been created through necessity of the war.

By 1945, when the National Health Service was proposed, it had become evident that a national system of health coverage was not only necessary but also largely already in place—with nationally run hospitals, salaried doctors, and free care for everyone. So, while the ideal of universal coverage was spurred by those horror stories, the particular system that emerged in Britain was not the product of socialist ideology or a deliberate policy process in which all the theoretical options were weighed. It was, instead, an almost conservative creation: a program that built on a tested, practical means of providing adequate health care for everyone, while protecting the existing services that people depended upon every day. No other major country has adopted the British system—not because it didn’t work but because other countries came to universalize health care under entirely different circumstances.

So whatever we end up with in the US it won't be an NHS. It might take some of the elements of the NHS and it will be based on our countries experience and system drivers. But within the discussion lets focus on facts rather than anecdotal stories and fears (as seen here in the Scientific American article on "Anecdotal Evidence undermining Scientific Results":

Thinking anecdotally comes naturally. Thinking Scientifically does not

So please start thinking scientifically and base discussion on science and facts and help move this reform forward.

More is Not Better

It is customary to believe that more is better. Higher availability and more access = better care...right? Wrong! A recent interaction at the pediatricians office amplified the point and the influence that the patient can have. In a case of extended week long general malaise some level of investigation and therapy was warranted and we agreed on some basic blood work. But in the conversation with the pediatrician she explained that many of her patients were insisting on "Lyme Titre's" based on local reporting of "huge increases in Lyme disease". Nationally the incidence runs around 0.04% and is considered "rare". I could have insisted but logically it made no sense - there had been no possible instance of exposure to risk factors (tick bites) so what would that test bring. But my choice was clearly not the norm.

It is this excess utilization driven by the system that is detailed in in Atul Gawande article penned a another insightful piece in the New Yorker that shreds the notion that we are getting better care just based on higher access. "The Cost Conundrum" is the talk of the town and rightly so.

In his tale of two cites - 800 miles apart in Texas the data available on healthcare costs and results shows that McAllen, Texas is spending approximately twice the cost (~ $15,000 per enrollee). Currently Medicare income per capita is $12,000....! In El Paso - some 800 miles away the costs are half as much running at around $7,504 per enrollee. Similar mix of demographics and public health statistics.

His discussions with local residents and providers was revealing in the wide variation of possible causes:

• McAllen is providing unusually good care (it's not)
• Better technology availability (it's not)
• More doctors (no difference)
• The service is better
• Malpractice is a bigger problem (not based on the recent Texas law capping malpractice claims)

In Fact on the quality metrics published by Medicare:

Nor does the care given in McAllen stand out for its quality. Medicare ranks hospitals on twenty-five metrics of care. On all but two of these, McAllen’s five largest hospitals performed worse, on average, than El Paso’s.

Not only is the cost troubling but the outcomes show that the population is not getting value for their expenditure. As is so often the case if you follow the money" the answer becomes evident. Our system incentivise use not results. As the cardiologists put it when asked about a hypothetical patient with chest pain that goes away and has no associated family history or other clinical indicators to suggest heart disease...

“Oh, she’s definitely getting a cath,” the internist said, laughing grimly.

And for many patients this would be a great outcome. They got the test they needed and ruled out heart disease. Not so for the sub group who are unfortunate to suffer complications some minor and transient and some major and permanent (you can get a good overview of the procedure and complications here):

The1-2% of people who get major complications from the procedure, the 0.08% who die from the procedure, the 0.03% who have a myocardial infarction precipitated by the procedure, the 0.06% who have a devastating stroke or the 0.62% or 0.06% depending on the approach Hospital Acquired Infection, the 1% who have an allergic reaction to one of the many agents used, the 1% who may go on to develop renal dysfunction....still feeling good about the investigation?

In McAllen the analysis of the Medicare data revealed some troubling variation compared to El Paso:

Between 2001 and 2005, critically ill Medicare patients received almost fifty per cent more specialist visits in McAllen than in El Paso, and were two-thirds more likely to see ten or more specialists in a six-month period. In 2005 and 2006, patients in McAllen received twenty per cent more abdominal ultrasounds, thirty per cent more bone-density studies, sixty per cent more stress tests with echocardiography, two hundred per cent more nerve-conduction studies to diagnose carpal-tunnel syndrome, and five hundred and fifty per cent more urine-flow studies to diagnose prostate troubles. They received one-fifth to two-thirds more gallbladder operations, knee replacements, breast biopsies, and bladder scopes. They also received two to three times as many pacemakers, implantable defibrillators, cardiac-bypass operations, carotid endarterectomies, and coronary-artery stents. And Medicare paid for five times as many home-nurse visits.

As Atul Gawande put it:

The primary cause of McAllen’s extreme costs was, very simply, the across-the-board overuse of medicine.

The good news is that just having the technology does not necessarily translate into over use. The Mayo clinic in Rochester has some of the highest levels of technological availability but one of the lower rates of Medicare spending (in the lowest 15% of the country at $6,688).

At the core of this story is data - the lack of insight and availability of data was troubling:

It was a depressing conversation—not because I thought the executives were being evasive but because they weren’t being evasive. The data on McAllen’s costs were clearly new to them. They were defending McAllen reflexively. But they really didn’t know the big picture of what was happening.

The most expensive piece of equipment in the hospital is a doctor's pen. But this tool has been heavily influenced by knowledge and availability of best practices. Where best practices are well defined there is close alignment in the clinical choices. Where the science is unclear the variations arise from high levels of investigation (in areas of low cost healthcare delivery) to low levels and conservative treatment (in areas of low cost healthcare delivery). Overall the intent is not to over charge or provide more care but the underlying drivers change behavior for clinicians who try to cope with a complex and overwhelming system that they have little training to deal with.

To borrow form the Six Sigma and Deming's "Plan-Do-Check-Act" Cycle Six Sigma attacks problems with DMAIC

• Define high-level project goals and the current process.
• Measure key aspects of the current process and collect relevant data.
• Analyze the data to verify cause-and-effect relationships. Determine what the relationships are, and attempt to ensure that all factors have been considered.
• Improve or optimize the process based upon data analysis using techniques like Design of experiments.
• Control to ensure that any deviations from target are corrected before they result in defects. Set up pilot runs to establish process capability, move on to production, set up control mechanisms and continuously monitor the process.

Rinse lather and repeat. Critical to this process is developing measures and collecting the data to measure. But healthcare has lived in a wilderness of data both clinical and financial. Everything about the current system is focused on increasing volume in part to offset the decreasing levels of reimbursement. Creating systems like the Mayo that deliver care where "the needs of the patient come first" is at the core of the changes necessary. What is interesting is that most here would love access to the Mayo care but in the political battlefield the concepts and ideas are tainted as rationing and limits to our supposedly great service.

Everyone likes to bash the NHS in the United Kingdom and roll out the legion of complainers who list the reasons why the system is not working while failing to acknowledge the integrated care and access helps deliver better care. While the NHS may not be the perfect system it does encompass elements that we should learn from. I know which care I'd prefer to receive - that of the Mayo style; balanced and high quality. I avoid the McAllen experience where possible recognizing that the "MD" at the end of my name can influence the clinical interaction positively or negatively. I can invariable force the investigation or test if I choose to but I elect to be far more conservative in my approach for me and my family. As I did with the Lyme Titre and do repeatedly - I remain conservative bucking the trend.

Do you? Would you have insisted on the Lyme Titre or just accepted it when it was mentioned simply because you had heard about Lyme disease, were worried and your physician had mentioned it? More is not always better. What's your experience?

Declare Your Rights to YOUR Health Data

A small group of individuals including Adam Bosworth, Jamie Heywood, David C. Kibbe, Gilles Frydman, Alan Greene, and Sarah Greene, began drafting the Declaration and reaching out to others for feedback and improvement. The refined Bill is available at this site and is summarized at the end of this posting A Declaration of Health Data Rights

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A Declaration of Health Data Rights

In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

1. Have the right to our own health data
   
   
2. Have the right to know the source of each health data element
   
   
3. Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
   
   
4. Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

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What a great concept founded on the same principles from a couple of hundred years ago as part of the formation history of this country. It is the end of the secret code and hidden meanings in patients notes (think GOMER, Turf, Bounce and many others). Something that was highlighted in the ground breaking book by Samuel Shem; "The House of God" that was released in 1978 and was one of the first to reveal some of the struggles in the medical field and coping mechanisms that included coded abbreviations describing patients in less than complimentary terms. But all of that is a good thing and the full sharing of notes and information with the rightful owner has some added value - things that are wrong can be corrected. e-PatinetDave generated a big swell of interest when he highlighted the junk that exists in your medical records as he started to review his own making the point that we must get our data, manage it and review it. In fact as I said before - we need to become our own Primary Care Physician. Dave deBronkhart needless to say is an early supporter and in his post on the declaration makes the point:

These rights are as inalienable as the right to life itself.
Whose life depends on the data's accuracy, its availability?
Whose data is it, anyway?

I could not agree more and am reminded of a discussion I had three times prior to the birth of each of my children. I had the privilege of delivering my kids but took no clinical responsibility. The hurdle and message I had to get through to the obstetrician (OBGYN here) and midwife was that there was possibly only one other person in the room with bigger vested interest in the successful outcome - that would be my wife. So they had to know and believe that I would not get in the way or hinder their ability to deliver care in the event that medical intervention was required. Fortunately in all three cases we had normal and successful deliveries but had that not been the case I was ready to step aside at a moments notice. The same principle applies to my medical record - I want it to be correct and am more likely to have the time and knowledge to review and correct any mistakes.

There is of course a fly in the ointment here - one of knowledge of terminology (something that technology and support infrastructure may help along with review in conjunction with experienced clinical professionals). BTW - I see an emerging role for a patient supporter who has additional knowledge and training to help with this. Interestingly the Medical Editor has much of the knowledge necessary to help process and understand this data and this might well become one of the future roles of these knowledge workers. But there is also the issue of pre-existing medical condition coverage and the general mess that exists in the US related to patients inability to get coverage when they have a conditions - and in some cases being "turfed" out of the insurance plan after they are diagnosed with a condition. This creates an incentive to lie about conditions and conceal diagnostic information. The answer here of course is to fix the insurance problem and create an all encompassing affordable insurance system that spreads risk across the whole population not just the healthy. There is no incentive in the United Kingdom's NHS system to conceal clinical data for fear of lack of coverage since the system treats all.

As someone put it on the site - you can bet that Steve Jobs insisted on getting his Medical Records in Digital form and in a form that he could review and transfer to other doctors. I bet he got it too. But this is about everyone else's rights and our need for easy access to our information.

Go endorse these rights here or add a tweet with the HashTag #myHealthData and become a fan of the FaceBook Page that is here

Secretary Daschle First Steps

Senator Tom Daschle formally launched into his new role (to be confirmed but seems likely) as the Secretary of Health and Human Services yesterday at the Committee on Health, Education, Labor and Pensions - presided over by Senator Edward Kennedy.

His passion was clear and he was articulate and knowledgeable talking of personal stories of bankruptcy and lack of insurance coverage that he had witnessed. You have to like his agility in dealing with his colleagues from both sides of the floor and certainly his rhetoric resonated with me.

The problems are large and the challenges great but facing up to the issue of uninsured, catastrophic health bankruptcy (covered here in the US vs UK nightmare experience) is a great place to start. He referred back to the health care reform from 1994 which I personally remember well as an observer from the other side of the pond when many thought the two systems from the UK and the US were moving towards each other but unlikely to meet in the middle. The prevailing view then was the US system was moving to a UK style model and the UK was moving towards a pay for service US style..... neither materialized.

On first blush there is much to commend and like about his style, understanding and intent. The system is broken - I think most would agree on that and needs fixing. The process must include all the stake holders involved but requires government involvement with great leadership.

As a note on a colleagues board says - "if you think you are leading and no one is following you then you are just taking a walk".... I'm following for now and watch this with renewed optimism

Maternity Care Makes up 25% of Admissions in the US

Obstetric care makes up ~ 1 in 4 discharges from hospital. The Agency for Healthcare Research and Quality reports that admission for childbirth outnumber admissions for pneumonia, cancer and heart failure. Unfortunately for many their view of childbirth is summarized by this quote:

"A lot of people think pregnant women are an accident waiting to happen"

Yikes! Mothers have been having babies for many years - this kind of attitude is reminiscent of the "State of Fear" that is detailed in Michael Crichton's book of the same name. There are some trying to combat this and Rita Rubin's article in USA Today this week: Maternity-care failings can be remedied with cost-saving fixes features some good examples including Valerie King of the Oregon Health & Sciences University who makes an excellent point

"Fortunately, maternity care is a place where good care and good economics come together."

And given the numbers this is a great place to focus. The latest numbers show a big increase in costs with a jump from $79 Billion in 2005 to a $86 Billion in 2006. Of this, estimates are that $2.5 Billion of that cost is associated with unnecessary care (mostly intervention with Cesarean Sections). The latest report published by the Childbirth connection on Evidence-Based Maternity Care focuses on the unnecessary care being delivered and the over use of intervention which is best demonstrated by the Cesarean Section rate in the US which stands at 30% (in the UK the rate is 24% which is also higher that expected)

Key to dealing with this is clinical data so there is no need to repeat unnecessary tests and investigations and making this information readily available will help the clinical staff and making the capture of this information as facile as possible.

You can read more about this at my "Navigating Healthcare Blog" - here which talks about the UK experience and covers some personal guidelines for mothers and parents to consider as they look at care in this area.

A Facebook Medical Record

What are we trying achieve with medical records....? Asides from the obligatory proof that the care was delivered (billing) and determining how much should be paid for the delivery of that care medical records are about sharing information between care givers. It has always been that way. Years back the number of care givers was lower and specialization less so the number of people needing accessing to the this information was lower. Now with the tsunami of medical information it is impossible for single care givers to deliver all the possible ranges of care and it takes a village team to deliver care.

And the latest explosion on online activity - one who's traffic can exceed that of Google and you tube is Facebook, which according to their own description

...is a social utility that connects people with friends and others who work, study and live around them. People use Facebook to keep up with friends, upload an unlimited number of photos, share links and videos, and learn more about the people they meet.

Now take this concept and adjust the wording.....

FaceBookHealthRecord is a social utility that connects patients with their care givers and others who provide diagnostic services, imaging, laboratory tests, results and pay for that care. Patients and clinical care givers use FaceBookHealthRecord to keep up with the status of their healthcare, their wellness and long term disease outlook as well as communicate quickly and effectively with specialists. All images, diagnostic study videos and diagnostic testing information can be uploaded and shared withe the clinical team allowing everyone to learn more about he care of that patient.

The interaction concept has been tested and reported on - Bob Wachter wrote an article just recently on this very concept "Creating a Facebook-like medical record" where he slams home the point on interoperability

In fact, today’s medical record virtually guarantees the silo-ization of care. Few physicians ever read nurses’ notes, even though all of us depend on the nurses to be our eyes and ears. And the situation iteratively worsens every day. Why would a nurse, realizing that no doctor ever reads her notes, even try to write them to be useful to physicians? And visa versa, obviously. Over the years, this divergence has been codified into ritual, calcified by templates, and hard wired through regulations whose original rationale no one can remember

Interestingly he points out that the spooks have gotten in on the concept with FaceBook-007 aka A-Space (I am guessing short for Analytical Space...?). Launch is set for Sep 22, 2008. UCSF back in 2003 launched a concept very much in line with the sharing of information amongst all the related parties (notably not the patient in this case) called Synopsis

As with all folklore associated with good concepts it was an rapid victim of its own success receiving requests for access, being copied and installed at other locations by users and even covered on a Web based M&M rounding on the Agency for Healthcare Research and Quality (AHRQ) site

There is work on these concepts underway and even some launches - if you live in New York you can sign up with HelloHealth from MyCA Health group who liked the approach taken by Jay Parkinson (the Hipster-MD from New York- pdf) who launched his own home made system with a similar ideal of sharing information digitally and providing easy, affordable access to patients some months ago. The NHS in the UK is getting in on the act with the "Individual Health Record" and covered in a recent article "Personal Healthcare Management" (subscription required) in my regular column in the British Journal of Healthcare Management.

There is even a Facebook application - MedCommons available today for a subscription plus monthly storage charges. Unfortunately much of what will be transferred in is likely to be scanned images and print outs. The introductory video even shows your physician office receiving access to your medical data and printing it out.....sigh! This will change but for now we are stuck with the legacy information

No doubt there will be detractors and there are bound to be issues and problems but overall you have to like the idea of sharing data on the quickly and effectively with the full clinical team. And there lies a key point.... the information must be be clinical data and should be tagged to a controlled medical vocabulary to make this information valuable for automatic machine processing. But lets not burden the clinicians with entering data in online forms but provide tools that capitalize on clinical documentation and the natural expressivity of language while still creating the structured data that can be used by these connected applications.