Adam Bosworth’s Weblog

What the Republicans are doing now with regard to the health bill is a classic tactic used by scum everywhere through history. It is the big lie and the vicious lie. Hitler used this tactic over and over again in gaining power in the third Reich. And the real truth is beautifully described by NICHOLAS D. KRISTOF in the New York Times.

This is a personal issue to me and thus makes me particularly angry. When my poor mother finally turned the tide for the worse in her battle with Ovarian cancer, she was diagnosed at the Hutch in Seattle. I had to fight, almost physically, to get her out of a hospital 3,000 miles from her beloved apartment in NYC and back home to the apartment where she wanted to end her days. I almost had to medivac her before she recovered just enough to get her discharged and onto a wheelchair and thus onto a plane back to NYC. Once in NYC, I brought her into Sloan Kettering Memorial Hospital which had treated her well while treatment worked, but once it was clear that all options had ended and she only had a couple of months left, they and the current medical system left her and us terribly adrift. They basically sent an old lady away to die and confront fear and pain without any offer whatsoever of home help. They gave her a complicated regime for the painkillers and other meds that even the visiting nurses of NY (who were saints) couldn’t administer and Sloan offered no help in finding the “High Tech” nurses we required for my mothers care. We went through fear, pain and panic for the next couple of days trying to help her follow the meds regime they had given us on discharge which it turned out, even the visiting nurses of NY (saints!) couldn’t follow. I finally found some along with the help of an extraordinary friend of my mothers who had been an ICU nurse and we managed for the next 2 months until her last few days when she chose to go into a hospice. But the modern health care system tried hard to have her die in the hospital at a cost of 1,000’s of dollars a day when all she wanted was to be at home, pain-free, among friends. For that, not a penny. Her hospital never even called to see how she was doing.  And this is what the Republicans are trying to protect – this soulless cruel heartless vicious system. They should be ashamed. I am ashamed of them.

I was at the Aspen Health Forum last week listening to a really diverse crowd talk about health care in the US and doing a bit of talking of my own.  I was talking about the importance of giving us all the right to our health data online, a topic I’ve posted about with many others on healthdatarights.org and my talk fit right into the larger topic of how personalization can help to transform medicine which can be found if you scroll down to the “Big Idea – the body”.

The theme of the conference was a more holistic one and included a truly wonderful talk by Mehmet Oz about overall health and wellness as well sessions on play, food, and sex. People forget how much of illness is caused by stress and how important it is to find ways in your life to just enjoy the world you live in.  None of us can completely avoid stress, but all of us should strive to balance our drive to succeed with the need to stop and smell the roses. Of course the conference on all this started every day at 7:45 AM and finished at 10:00 PM and this was a weekend, but the intentions were good.

If you want to know what I said there and would prefer to read than listen, here is the text of the talk I gave at the Aspen Health Forum.

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There is a lot of talk about improving health care. And there is a lot to improve.

Inadequate Evidence: We don’t know enough about what works. We should require sharing of population statistics across practices and hospitals in order to better determine what works for whom. We should reward practices and hospitals that are delivering the best most cost-effective long-term outcomes and penalize those that deliver the worst.

Overtreated: Doctors often don’t know what the evidence suggests that they should do. Often even when they do they don’t do it not because of careful clinical thought but habit. The book Overtreated makes this painfully clear. We need to reward/encourage doctors based on long-term outcomes, not pills and procedures.

Flatlined: Payment is skewed away from the people who should be the coaches for consumers, the primary care physicians, because of a model that pays for the complexity of a procedure rather than for the cost-effectiveness of it. This model has encouraged countless unnecessary spinal fusions, stents, and other expensive procedures and discouraged any form of preventive medicine, patient jawboning or oversight. We need to reward/encourage doctors based on cost-effective long-term outcomes, not on difficultly of procedure. The book Flatlined makes this point incredibly clear.

No PCP <-> Patient time: Doctors can’t jawbone their patients anyway. In the old days, primary care physicians jaw-boned their patients. But that took time and energy, neither of which they have today when they have 30% increased patient loads. So they don’t. And people who should be healthy end up with joint replacements, depression, stress, heart disease, diabetes, gestational diabetes, and increased risks of cancer. And in so doing, the life-style related diseases cost us over $3 Billion a day.

Lifestyle: And the patients need jawboning badly. A key reason that our health care costs are out of control are consumer’s life styles and ignorance and lack of skin in the game. Patients literally do not know how to be healthy, have no sense of the implicit costs of being unhealthy, and have no incentives to be healthier short of chronic pain. up to 70% of our costs are due to life-style related diseases with obesity and inactivity and poor eating choices being key ones. 23 years ago, only 7 states had an obesity rate over 15%. Today only one state is under 20% and that majority are 25% or over. We have a wave of diabetics who don’t really take care of themselves leading to amputations, blindness, renal failure, heart disease, and other terrible consequences and costs.

They need more than jawboning. They need tools.

I dream of a day when everyone has online access to their health and wellness plan – Not their sickness plan, but their health & wellness Care Plan, personalized and tailored to their specific health data, their needs, their goals and  their realities.
I dream of a day when we don’t publish books about how to stay healthy, we publish personalized health & wellness Care Plans written by the best in the business, experts in their fields, but augmented by the feedback and realities of online engagement with their customers as the authors and experts determine what works for whom.
I dream of a day when we truly know which Care Plans work for whom because we have been able to measure which do.
I dream of a day when consumers talk about their health score as today, they might talk about their handicap or FICO score and work with trainers to lower it as they do their handicap
I dream of a day when their doctors are partners in these Care Plans, not people patients visit when they are sick

We can and will fuel the engine and drive the innovation and payments that will slowly but surely reverse most of these problems.
This dream requires only one thing to make it a reality. One thing that can unblock this logjam. Here is the “big idea”.

HealthDataRights.Org

Why the Declaration of Health Data Rights
Shockingly most doctors don’t even have the patient’s data electronically. But the organizations at the source do. Labs and the pharmacies and insurers and the imaging labs do. We empower the consumers to get their health data electronically, rapidly and online. This is the fuel that will fire the engine of consumer health-care because it enables the rise of online tools to help consumers manage their health and work in a participatory manner with others best equipped to help them driven by data and expertise specific to their needs. As human beings, we all have this right. To deny it is to deny healthy living to all. We are in the business of increasing health and this is the tap that must be turned on.

What will this enable.

Revolution Deferred: Next we move the routine and the information out of the doctors hands and into the consumers through these online Care Plans, whether it is getting ready for a visit, discharge, or managing a chronic disease. The internet has profoundly revolutionized every other business moving all routine work into the consumers hands, but giving them choices, flexibility, and transparent information. Travel. Banking. Books. Movies. Eating. Only in health care is this revolution deferred. We must move health care out of the 19th century and into the 21st. Then we will harness the creative talents of tens of thousands all across the world. What’s more, it will enable us to measure what works for whom in a computable fashion. It is unacceptable that this hasn’t already happened.

Health Coaches anywhere: We allow people anywhere to provide expertise online to consumers. What sense does it make that only a cardiologist in NY state who may well be out of date and has no incentives to help someone go on a diet/exercise regime is the only one who can treat a patient in NY state? Why can’t anyone with expertise in heart disease, anywhere in the world, help that patient? They will become the online partners in these health plans.

Patient Engagement: The most important of these tools will be Care Plans. They will be the online tools consumers use to know what it means for them to be healthy and how to be healthy. People need the tools and training and support to know what to do, why they should do it, and the encouragement to do it. This is called patient engagement. This is called participatory medicine. Once people have online control over their health data, their medicines and their labs and their images, a myriad of online Care Plans will emerge to help them understand how to be healthy

Incentives: Lastly, we provide some incentives, even small ones, in the form of lower health care costs, to individuals who are managing their health well as measured/defined by these computable protocols. To anyone who has tried it, a reward of a few $100 / year has a dramatic effect on compliance. Let’s say that 70MM people aren’t managing their health well or the health of their children. At $300 / year in incentives (e.g. decreased premiums) that’s $21 Billion a year or less than 1% of our health care costs IF they in fact become as healthy as they can in which case they save far more than that. We spend that on avoidable life-style related health-care each week right now. The return on that investment would be almost 100:1. It’s effect will be vastly greater than putting the current behemoth EMR’s into doctor’s offices which will often be like giving giant combines to the suburbanite who wants to mow the lawn.  Giving physicians the wrong tool and the wrong incentives will still lead to the wrong result. Giving the consumers the right incentives will drive consumerism throughout the healthcare system and drive the right results, by definition.

All this stems from an incredibly simple idea.

Give consumers the right to a copy of their own health data, without impediment or delay, online in the place of their choice.
We will see the rise of online Health Plans targeted at helping consumers to understand their health and to learn how to be healthy or stay healthy.
We will see the rise of money flowing to consumers, doctors, nutritionists, fitness experts, and health coaches to support the consumers in their efforts.
We will see the system evolve from a sick care system to a health care system, driven by consumer demand.

Why will this work? Because it harnesses the power of the world’s intelligence, the world’s online delivery and the worlds innovators – you – and rewards you for doing the right thing.
It isn’t bottle-necked by how many people in medical school become PCP’s because the online tools massively leverage expertise and remove rote work from physician’s lives and transcend national borders.

It funnels the money and the talent to what works.

When we all support the declaration of Health Data Rights in deed, not in words, we will change health-care.

Join me in making Health Data Rights a reality, not a dream

Mark Leavitt has written an angry post in the Health Care Blog about some concerns David Kibbe has with the current administration health plans. (Full disclosure – David Kibbe is an adviser to Keas and a friend).  I understand Dr. Leavitt’s annoyance, but what is really happening here is a result of a deep fear among many of us that the new ARRA health bill will miss out on an incredible opportunity to actually make a difference in how health care is practiced. This fear can be paraphrased as a fear that only the incumbents will be allowed to be “certified EHR’s” and arguably the incumbents haven’t really made as big a difference in how health care is practiced as one would hope.

Let me explain.

The simplest way to describe what the administration seems to want is to be able to insure more people (a LOT more) at a lower cost (since otherwise the total costs go up a lot). Many of us have a strong belief that we can only lower costs and/or improve health-care if we make the consumer part of the solution, what is often called “patient engagement”. At the end of the day, episodic care treating people only when they get seriously sick, enough to go to their doctor or the ER isn’t ideal. What we believe is ideal is teaching people to keep a constant eye on their health and keep them out of the doctor’s office and especially out of the ER.  One might think that the forthcoming funding for Electronic Health Records (EHR’s) would support systems that deliver this sort of patient engagement and long-term patient wellness and thus help lead to better support for patient engagement. But in fact, many of the  traditional EHR’s have not focused on this at all, hence our fear about giving them a de-facto monopoly.Secondly, most small practices can’t really afford to use big iron EHR’s. Even if it is free, they can’t really afford to do it because it will still require training, more time per patient potentially, and so on. Lastly, more EHR’s don’t work with other EHR’s so that coordinated care across practices isn’t supported and most people who are elderly or who have serious illnesses have more than one physician treating them.

The way around this is to build systems that don’t just duplicate what physicians do today during their face to face meetings with their patients, but rather provide new capabilities that will help with continuous and coordinated care and can generate additive revenues for physicians and then evolve by adding those features that automate the current physician activities as demanded by the physicians. What would such systems support? They would support having a way to chat with or exchange messages with a patient for a fee so that unnecessary office visits can be removed and the patient is more likely to reach out for help. Think eVisit-lite. They would support a simple way to monitor the health of a patient who either has a chronic disease or is on path to developing one again for a fee so that physicians are actually getting paid for keeping their patients healthier as opposed to being punished for it since, ideally, it will result in fewer visits/procedures over time. In short these systems will support physicians  managing an ongoing paid relationship with the patient rather than an episodic one measured only by in-office visits.  What should be done about helping physicians who are afraid of losing time to retraining? These systems should be as easy to use as a Southwest airlines reservation page. These systems should have a cost is so low that physicians don’t care. Most of these points aren’t typical of most of the big EHR’s currently being sold. Again, hence our fear that a de-facto monopoly of the incumbents will lose this opportunity to let 100 disruptive innovations flower.

It is my opinion that the bar for “meaningful use” and a “certified EHR” should be limited to the following:

• Easy way to share electronically computable data about medicines and labs with the patient’s URL’s of choice. These URL’s would point to the services that are helping/advising/monitoring the patient in a patient controlled way. This alone should be enough to declare a tool certified because it empowers consumers to take charge of their own health. This is also the backbone of cooperative care since then multiple physicians, regardless of vendor or practice, can exchange and share computable health data about a patient.
• Easy standardized way to support an inbox both between physicians using different EHR’s (think email today) and between patients and their physician/nurse/physician’s assistant. This should be optional, but Medicare and insurers should be encouraged to pay for such support. Kaiser has found that the burden isn’t high and it cuts in-office visits significantly. This should certainly be sufficient for meaningful use because this, in conjunction with the first point ensures that physicians can coordinate care for a patient. It also frees up the patient to pick the best other doctors who provide the best care, regardless of practice because the collaboration can occur across practices.
• Support for ePrescribing, largely, to be honest, so that the prescription information can flow to the patient.
• Easy way to put patients on ongoing fee-based computable care programs and monitor how they are doing sending alerts to the physician where necessary so that physicians know when their patients are trending in the wrong direction. Something as simple as monitoring blood pressure and weight and ankle swelling can prevent repeat heart attacks. Something as simple as monitoring total steps taken a day and blood sugar and meals can prevent serious diabetic complications. But physicians aren’t paid to put patients on such plans or for the time to monitor them. Instead we wait for catastrophe and pay for that.

Not one of these except for ePrescribe duplicates existing physician work flow . These are new services that should generate new revenues for physicians all focused on continuous and coordinated care. Most people don’t get these services from their doctors (Kaiser is always a notable exception precisely because, I believe,  they are actually paid to keep people well).  And these are the services that will truly drive patient engagement with their health and with their physicians. Ultimately, it is my premise that patient engagement with their physician is the key to unlocking our health system, driving true innovation and converting it from a sick care system to a true health care system. There is an excellent post by David Brailer, the former National Health Information Technology Coordinator, supporting the urgent need for innovation and patient engagement in health care.

I ask Dr Leavitt and CCHIT to help ensure that the funds unlocked by ARRA be used to support these capabilities in as open and easy a way as possible and to avoid, at all costs, a de-facto monopoly in the physicians’ offices by the current EHR vendors by defining meaningful use of certified EHR’s to meet only the few and simple requirements listed above.

Best two books I’ve read on health in the US this year were:

Flatlined and Overtreated

Both make it so clear that we have to fix the system that you wonder how some Senators can continue to blithly insist that there is no problem and that we have a “pretty good system”.  We have good doctors and technology. The system itself, as these books make clear, isn’t good at all.

When I was running Google Health I would constantly hear how it was impossible to download health data because of the doctors notes and conditions and lots of fancy stuff that wouldn’t be interoperable. And I agreed. I focused entirely on getting labs and meds to be generally available because these seemed to be the only two things that were computable and not dependent on the vagueries of the hospitals and EHR’s. There is a wonderful post up on on ePatients.net by e-Patient Dave detailing what happens when you try to get more and actually get less. The post is a constant reminder to start small and make sure that what you’re doing works. It is also a reminder that the big systems because they aren’t paid for by the consumers or reviewed by the consumers or ever see the light of day are a terrible mess. Like everything else hidden in the dark, health data is crawling with mistakes. Let’s let the light in!!

The New York Times has a dire warning that the $19 Billion that ARRA calls to spend on electronic health records (EHR’s) could be wasted.  They bring up two valid concerns. The first is that physicians will not use EHR’s to improve the quality of healthcare, but primarily just for record keeping. The second is that the government will not require simple open standards that all comers can easily use to drive innovation and new cheaper solutions.”

It is certainly a risk and some of the answers aren’t intuitive. The ARRA act calls for meaningful use of the EHR’s and the NY Times article assumes that meaningful use is determined by improving care and curbing costs. This is of course the goal and if the EHR does a good job of real-time clinical decision support, it will undoubtedly improve care.

But it is an error to conflate physicians using EHR’s with curbing costs. To curb costs it is essential to create more ways and more choices for patients to own their computable health data thus enabling patients to use their data to get help and advice. This is usually called Data Liquidity and it empowers patients by adding choice into the equation. Put simply, EHR’s should, at the patient’s request, send the patient’s data (and it is the patient’s data after all) to their PHR (personal health record) of choice. Then, instead of being reliant on a single overworked physician to understand and interpret their data, they can have access to many tools and many people to help them stay healthy and on their own dime. History has shown that choice and competition lead to far better and more cost-effective results.

Some object to this model of patient controlled PHR’s. In the current issue of NEJM there is an article by Drs Paul  Tang and Thomas Lees suggesting that the best PHR is one tethered to the EHR. They argue that only this way can there be a shared patient record and only this way is the patient’s security and privacy be assured thanks to HIPAA. The article further contrasts the untethered PHR to the one run/managed by the doctor by suggesting that only the latter will help the patient to easily manage and understand their blood pressure and glucometer readings with intelligent doctor oversight.,This is very much a false dichotomy.

First, HIPAA does not give patients the ability to control who can see what of their data. It simply makes sure that only a doctor treating them can have access to it. But the patient has no fine grained control. Microsoft’s HealthVault, by contrast, does provide such protection. Clearly no one would use a PHR that leaked their health data so the business imperative for PHR’s to be secure is actually far greater than provider imperative.

Secondly, as the article points out, many patients see many doctors. The odds that all one’s doctors work for the same institution with the same EMR are both slim and presuppose, again, a lack of choice for the patient.

There is a much simpler solution. First, require the newly “certified” EHR’s that ARRA will pay for to share the patients Labs and Med’s and Conditions in a standard computable way with the patient’s PHR on patient request. Many countries  have long since figured out how to do this using SNOMED codes. Surely we can do the same using standard encoding’s for the Meds, Conditions, and Labs and standard XML formats like CCR and CCD to describe the patient data. Indeed many health organizations have have already done just this with Google Health such as Beth Israel Deaconess, Cleveland Clinic, Quest Diagnostics, CVS and Walgreens.

Second, provide extra rewards to EHR’s that support interoperable secure messaging using a standard way to exchange messages. Then patients can own their data, have a wide range of choices and still have an efficient way to communicate with their doctors. And a huge side benefit will be that doctors can now see the bigger picture of what is happening with their patients outside of their own practice.

All this will lead to truly collaborative medicine with a payoff that can only come from informed decision making and feedom of choice by the patients.