Adam Bosworth’s Weblog

What is the future of health care? How will we actually lower the number of people who suffer or die needlessly?  How will we deliver care more effectively? Today, two ideas are competing for attention in this space:

1. Personalized Medicine
2. Personalized Wellness

Let’s talk first about Personalized Medicine. There is a lot of talk about the future of medicine being personalized medications. What is usually meant by this is that the blood and DNA of the patient is analyzed and then, using data gleaned from the EMR, a medicine precisely tailored to meet that patient’s need and their metabolism is prescribed. This is of course a wonderful vision—one that I would have loved to see realized a few years earlier. My mother was given several medicines for her recurrent ovarian cancer that were more or less ineffective.

Now it isn’t a pipe dream. There are blood and DNA tests run today for medicines like Warfarin or treatments for breast cancer. The best example is AIDS/HIV where DNA of the virus is used to determine which retrovirals will work. But in general, this is turning out to be very hard and very slow to do. It is hard just to figure out which medicines work for who based on their blood, DNA, and other phenotypic data. It works in some cases but fails in many. And even when a drug targeting a specific genetic profile is engineered, it is difficult and expensive to deliver to the right place in the body at the right time, in the right amount, and for the right duration. For example, we’ve known a lot about the genetics of cystic fibrosis —i.e., which proteins aren’t being generated properly in the lung cells due to mutations in a specific gene. Presently there are viruses that have been engineered that can generate the correct, functioning proteins, but the means to deploy an effective treatment has yet to be solved. Still there are clear examples of personalized therapies based on an individual’s DNA which help prolong life and have sufficient sales to warrant biotechnology/ pharmaceutical interest.  The clearest example of this is the drug from Genentech called trastuzumab (brand name Herceptin).  All in all, it is likely that it will be expensive and hard to change the DNA, but that the ability to produce solutions based on one’s DNA will be more viable.

Another issue is cost effectiveness in producing personalized medicines when such treatments serve a small market; the more specialized the medicine, the less likely it is to be developed. Thus, will we see a slew of highly personalized drugs targeting unique genomes or disease organisms? As was said in the movie “The Princess Bride,” when two magicians tried to bring the hero back to life and one magician asked another “think it will work?”, the reply was “it would take a miracle.” Of course in the movie he did come back to life, but life isn’t a movie.

Now let’s talk about Personalized Wellness. The leading causes of death relate to life style, lack of routine medical examination, and basic outages in care.  Put differently, it doesn’t require medical miracles to prevent far more disease and avoid far more suffering and deaths than all those caused by cancer (outside of lung cancer) each year. It requires personalized wellness and “good health incentives.” What is personalized wellness? It is personal advice to individuals about their health that takes into account their health data, their personalities, their goals, and their activities and what is the appropriate standard of care for them. It involves tracking their progress or lack thereof—what the Robert Wood Johnson Foundation has called ODLs or observations of daily living.

It’s possible for people who are at risk for diabetes or heart disease to avoid these diseases.  And for those who already suffer from them, it’s possible to cure them by clearing up their arteries or at least stop complications like blindness and renal failure. If they are living with asthma, get them the personalized help they need to minimize attacks and shorten episodes. If they are living with depression, give them support and tools like breathing calmly, meditation, regular exercise, and smart diets. This isn’t magic.  There is much scientific evidence about what works, and translations for healthy living are plentiful on the Web.  Think mint.com, a site that balances your budget, for health. The cost of building a site that empowers patients to manage their health is a tiny fraction of the cost of a single medicine being brought to market. Will DNA count in this space? Certainly. Some people have lower risks based on their genetic makeup, and others have higher risks. Certain nutritional interventions will benefit some people and may harm other.  But DNA testing can also inform intelligent prevention.

We want both personalized medicine and personalized wellness. But we can have the latter much sooner and it will probably do more good, at least in the next decade or two.

There is one thing making it very hard to deliver on this vision today. Much of personalized wellness advice depends on basic lab results like the lipid panel. The person with a total cholesterol of 150 may need different advice than the person with a total cholesterol of 250, for example. Today, if I go into a lab to get my blood drawn, say for my checkup, I cannot download the data into my personalized wellness tool of choice unless my doctor electronically approves it.  Not because the lab cannot support this—90% of labs performed outside hospitals are covered by Quest Diagnostics or LabCorp and both support electronic data transfer.  Rather, a doctor’s electronic approval is required to release the lab data to the patient, even when the patient wants this data. Well, most of the doctors aren’t using electronic systems and most of the ones who are don’t have the ability to approve these transfers, while some of the ones who do have the ability choose not to. The notable exception is Kaiser, which delivers labs to all of its patients online at the same time that the patients’ doctors get them. Three million patients use Kaiser’s PHR and the number one use is for viewing labs. Kudos, Kaiser!

But if you aren’t lucky enough to be a Kaiser member or want to use a different tool for this purpose, you are out of luck. (Actually, Kaiser may be integrating with Microsoft HealthVault and then one could use one’s own tools, but the timetable for rollout is unclear.) This is like not being able to use mint.com because your bank won’t allow the transfer of financial data to your account at that site.  It makes no sense, and is one more example of how the system foils patients’ attempts to take responsibility for their own health.  It clearly stifles innovation in an area that has the most potential to solve economic and personal health care issues in the U.S.

I call on DC and the State Legislatures to change these laws.  Learn from Kaiser.  Pass laws that specifically give the lab companies the obligation to deliver our data electronically directly to us – the people, if we want it. If you desire true health care reform that actually will lower costs and curb illness, unleash the power of the innovators to help consumers with personal wellness as mint.com does with financial wellness. Release our health data.

In most fields of human endeavor, there has been a sea-change, a revolution in technology, over the last decade which has gone largely unrecognized or acknowledged outside of the IT industry. It has been in the area of what is known either a machine-learning or data-mining. These are different tactics for accomplishing the same goal – learning from data.

What makes Google such a formidable competitor in the ads space is machine learning. What makes my bank now able to do such a good job of warning me about possible fraud is machine learning. What makes travel companies so good at pricing is data mining and machine learning. If I were giving any aspiring student going to a university to study computer engineering advice, it would be to focus on this area. It is almost like magic. We see it in subtle ways like NetFlix movie recommendations, but this is just the tip of the iceberg. Beneath the waves, almost every field is moving in this direction. And, these systems are dynamic and rapid. They are constantly learning and constantly improving.

There has been one notable exception. Health care. Machine learning and data mining do require a lot of data. Since you aren’t able to do controlled double blind randomized experiments, you need enough data to make the conclusions statistically significant in a messy data world. But given enough data, learning can and does happen. We are poised at the beginning of a similar sea-change in health care. As vast amounts of personal health care data start to get collected we will start to learn what is actually effective and what isn’t for whom. This is really a prerequisite for personalized health. The term is used loosely to mean giving people the personalized advice/treatment that they need based on their data. But the only way to personalize is to know what’s effective for whom. Some of this will doubtless be based on genomic information. But far more will just be based on looking at what is working for whom based on their conditions, ongoing test results, and treatments.  And this is key. The human body varies tremendously based both on environment and on inheritance. One size doesn’t fit all.

Until recently, a lot of machine learning from health data has been still-born for 3 reasons:

1. It has been too hard to translate what is known about personalized medicine from research into clinical practice. This is known as the “translation” problem. But online tools that do know these things are going to rapidly change this failure in translation in the decade to come.
2. There hasn’t been nearly enough data because almost no data was automated and, even when it was, it wasn’t tracking the data over the individual and their treatment plan. Instead, it was tracking the order over the insurance number and the practice because that’s where the money was. Between ARRA’s meaningful use mandates which are going to force tracking against the patient and the burgeoning consumer movement to take charge of their own health as the system increasingly limits their access to continuous care from physicians, this lack of data is going to change at least as profoundly in the decade to come.
3. There was no money in giving consumers personalized treatment and indeed movements against it, both the population studies (witness the debates right now about diabetics being told to lower their blood sugar) and because the doctor’s weren’t paid for outcomes. But consumers are going to demand the treatment for the best outcome. Also we’re learning that often, it will cost less. Often the standard care given is too much treatment, so brilliantly called out in the book “Overtreated” and, paradoxically, your outcomes are better as the cost goes down, not up.  Back surgery tends to be a post-child for this, also called out well in the book “Flatlined“. We are going to be forced to figure out how to be more cost-effective, and more effective in general in treating illness.

All the systems emerging to help consumers get personalized advice and information about their health are going to be incredible treasure troves of data about what works. And this will be a virtuous cycle. As the systems learn, they will encourage consumers to increasingly flow data into them for better more personalized advice and encourage physicians to do the same and then this data will help these systems to learn even more rapidly. I predict now that within a decade, no practicing physician will consider treating their patients without the support/advice of the expertise embodied in the machine learning that will have taken place. And finally, we will truly move to an evidence based health care system.

We are beginning to see the end of the beginning in health news. People are starting to realize that the system is broken. But we are in the cusp period and the news reminds me of watching a tide change right as you go from the ebb to the flood. The following articles caught my eye in this regard.

Best new post I’ve seen this year is about how we can really lower costs.If you read nothing else, read this please.

In their tirades against Obama’s attempts to fix a tragically broken health care system, the Wall Street Journal has descended to the ludicrous. See their article on Big Pharma gets played. They are shocked, shocked that US citizens may actually have the legal right to pay less for drugs by buying them from Canada.  The WSJ concludes by saying dramatically, that “the real victims of government health care will be American patients”. Because we pay less for drugs? When did the WSJ decide that price competition was bad for the consumer?

The WSJ editorials have consistantly ignored the elephant in the room, namely that US citizens are significantly sicker than most other civilized countries (we tend to rank between 25th and 37th) despite the US spending almost twice as much per capita  asthose countries and that our costs of health care – $2.5 Trillion on track to reach $4 Trillion within a decade as the baby boomers age – are unsupportable anyway. Something has to change. Also, consider that as the babyboomers age, the health care costs will be mainly in Medicare.

Strange things happen in Texas. Imagine if your broker was mismanaging your money and people in the organization spoke up and warned the SEC that this was happening. You might not know because you’re no expert on investing. Heck you might like the broker. But the people in the organization would know. They are the experts. What should happen? You would hope that the broker would be disciplined. But in Texas, when it is the vastly more important area of your health without which no real happiness is possible, if people speak up, they are indicted and threatened with 10 years in jail. Here’s hoping that the health care providers in Texas speak up loudly against  this  abuse of power.

A lot of doctors express skepticism out there about online support for health on the part of the doctors. A common comment is that my patients are older and aren’t on the net or aren’t willing to use the net to manage their health. Doctors should learn from Kaiser who reports that 87% of their Medicare patients are happy users of Kaiser’s My Health Manager.

It is interesting to watch some health care providers start to scream as it dawns on them that the meaningful use bill might actually require them to have proof that they are improving their patients health in some basic measurable ways in two and a half years. Incredibly, they claim that that isn’t enough time. In the world of online computing it’s an eternity.

In this post I want to talk about an overdue revolution – a revolution in health care. It is a revolution which can greatly transform health care for the better and one where an acknowledgment of some simple basic human rights is key.

In almost every field today, the power of online communities, online tools, and online data has been revolutionary, whether it be finance, travel, purchasing goods, books, getting the news, or entertainment. If, for example, we want to plan a trip, we can search online, book online, print out our boarding pass online, and see what others have thought online. Our schedule is clearly there and usually, if the site is well designed, it is there in a form where we can effortlessly digitally update our online calendars as well.

This revolution has led to far better information, far more freedom to plan and organize things and usually a far better experience. No more waiting in line at the counter at the airport or at the bank or at the store. No more wondering if we’re getting the right thing or going to the right place. No more (and you have to be my age to appreciate this) trying to get to the bank before 3:00 PM so that we’ll have money for the weekend or the vacation. Along with this convenience came the idea that the data is the consumer’s data and we deserve to know it. We have the right to it.

Yet, in the area where it matters most, our health, virtually none of this is true. It is as though the revolution never occurred.  We cannot easily see what our data is online (e.g. our labs, our prescriptions, our problem list, our images) unless we are lucky enough to be at Kaiser; let alone if, like almost all Americans, we have dealt with innumerable different clinics, hospitals, doctors, labs, and pharmacies during our life. Further, we cannot easily take the time online to understand what this data means for us and harness the online power of experts or the opinion of others to best understand our health and where we stand.

Let me give the simplest example. Many people in this country are given medicines by multiple doctors which may be dangerous in combination or have harmful effects if we have some specific condition. No fault of the doctors. They don’t have the holistic view of our health data either. They can’t even access our data online most of the time. Now the  American Recovery and Reinvestment Act of 2009 or ARRA aims to fix this for the physicians. But we, as the affected consumer, can’t easily go online, load in all our medicines and test results and problem lists in computable form and and with a mouse click learn if there’s an issue, as, for example, we might use an online flight tracker to see if there was a travel issue.  Thus our health and well-being take a back seat to our travel ease and comfort with potentially serious consequences.

Sometimes there are laws on the books that actually prevent us from getting our health data. If we have a risk of heart disease and really should keep an eye on our cholesterol, there is a simple lab test, a lipid panel, that we could use to make sure that our exercise, diet, and medicine programs were working. But in many states we cannot order this online. Even if it is ordered for us, in many states we cannot just ask the lab to directly download the results to us at the time the test is taken. It is as though they’ve made it illegal to find out how much we have in the bank or where our trip will take us.

Only our health is more important than anything else. Without good health, life is greatly compromised. If there is one place where we must have the right to the best information, advice, care, online support, and planning possible it is  our health.

Today I proudly join together with a group of  leaders across health care working to establish a Declaration of Health Data Rights. The text of the declaration is clear, appropriate and extraordinarily important to us all.

A Declaration of Health Data Rights

In an era when technology allows 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.

My company Keas and I wholeheartedly endorse this declaration and are proud to be part of a growing community that recognizes its importance.

If you would like to add your voice to ours, you can get started by visiting http://www.HealthDataRights.org and see who else is endorsing this declaration and spread the word. Support and defend our rights to our health data and start the revolution.

Obama’s administration took the first important step in health care reform this week. They put up a proposed definition of meaningful use for ARRA (The American Recovery and Reinvestment Act of 2009). There are two key documents to review: a preamble which is excellent and calls out all the key issues that need to be addressed; and a matrix which reviews the planned requirements for meaningful use for the key areas identified for improvement. These are:

1. Improve Quality, safety, efficiency, and reduce health disparities. – Read Overtreated to learn why this is key
2. Engage patients and families – Without this, we cannot solve the fundamental cost problems we face
3. Improve Care Coordination – It will be amazing to see care coordination come into the 21st century
4. Improve population and public health – They are correctly focusing on measuring what works and who is doing it
5. Ensure adequate privacy and security protections for personal health data – I believe consumers should control who sees what of their personal health data and am excited to see this supported.

I’m really delighted. This document isn’t perfect in my opinion. In particular, it calls for EHR’s to “provide patients with electronic copy of – or electronic access to – clinical information (including lab results, problem list, medication list, allergies) per patient preference (e.g through PHR). This allows the bad “old days” of tethered PHR’s to continue where as you switch doctors because of changes in your location, insurer, job, or just need a better doctor, or you want to include other doctors in complex care, or want outside or second opinions about your data, you cannot get it because not everyone is using the same EHR. It is key that the patients control their PHR’s and that they can transfer or download or copy this data in as computable a form as is available in the EHR into their PHR of choice.

But overall the committee that produced this document is to be congratulated. Kudo’s and congratulations to the members of the HIT Policy Committee and a special thanks to David Blumenthal. And while there are features in the matrix that aren’t called for until 2013 that I’d like to see in 2011, again, it is an excellent document.

The preamble does an excellent job calling out why we need this and what we need to improve. Don’t change a word of it please!!

Not only are tempers rising. There is a feeling across the board in health care that it is time to speak up.

Doctors are speaking up. Brian Klepper and David Kibbe just put up an interesting post. Bob Wachter, who I knew when at Google Health, referred to an excellent article by one of my heroes, Atul Gwande in his latest post pointing out that the current system has no discernible efforts to actually manage overall outcomes and costs.  Contrary to the inane platitudes one hears from certain Senators blandly assuring us that the health care system needs no repair, people across the board are pointing out that the system is broken. The center cannot hold. But we will not bow to the prediction in Yeat’s magnificent poem in which the best lack all conviction and the worst are filled with passionate intensity.The system can and must and will be fixed. It is time to speak up.

Watching legislature meet health care is like watching a slow motion train wreck. Witness the bill in contention in NJ right now. Essentially it will prohibit or drastically slow down the sale of innovative products that actually help consumers understand or manage their health. For example a product that prints out a medical history for the consumer to help him/her have a better doctor visit or a product that uses the FDA guidelines to warn about med/med interactions as Google does or a product that helps users collaborate on improving their health will all be prohibited if they actually used “health data” unless the CCHIT specifically licensed them. Imagine if every product to help you budget, plan a vacation and the finances, plan to save for your kids college education or retirement planning all had to be licensed by an agency let alone one that was never intended to do this. That is essentially what the NJ bill does. It is time to speak up.

A few weeks ago, I went to the Aspen Institute which just held an astonishingly good symposium on health. Special thanks to Michelle McMurry. It was particularly amazing and interesting to hear the talks of Peter Agre and Michael Bishop whose stories about winning the Nobel prizes were fascinating because both started in many ways as outsiders to the world of biology and without the relentless pre-professionalism of today’s kids and perhaps because of this initial distance changed science and medicine as we know it.

The obvious focus at the conference was on the train wreck that is US health care today. It became clear at the conference that if things continue as they are right now, we will manage to be spending $4.4 trillion dollars by 2015 or almost the entire Federal budget and still be delivering less than high quality health care and probably not solving the new epidemics of obesity and diabetes in this country. Clearly, this can’t go on. We are currently spending over 16% of our GDP on healthcare whereas France is around 8% and our overall health is worse. To go to the projected 30% would be a disaster and it was telling that not one but two heads of the congressional budget office (one past and one present) were attending the conference. One of the moments I found most unintentionally ironic was Bill Frist saying that of course we needed universal insurance as an obviously frustrated Elizabeth Teisberg pointed out with her usual lapidary clarity that insuring all would actually be cheaper because we would have preventative medicine rather than disaster handling, clinic care rather than ER care, and much less money spent by insurers trying to duck covering people since all would be guaranteed coverage. Where were the Republicans on this during the last eight years? But there was a thoughtful discussion about how this, all by itself, isn’t a solution, and we need to alter the system to actually reward people for good overall care and wellness of patients and good outcomes rather than paying doctors for procedures. It short we need the system to help keep people well rather than only treat them (at best) when they are sick.

There was an interesting talk given at the conference where it was claimed that of the four things you want from insurance:

• Access for all
• Affordable by all
• Quality care
• Constant innovation

you can only get two. The European system was held up as one that delivers on access and price, but not quality. Frankly, while I’m aware of some of the long and even unacceptable waits in the UK and the limited access of cancer patients there to new drugs, it isn’t clear to me that Europe isn’t in general getting three out of four while we get only one (innovation).

The most striking and shocking graphs at the conference were about type II diabetes and its rise in this country from a rare occurrence to a national epidemic in just 16 years due to an epidemic of obesity. Watching the time lapse graphs of this spreading across the US is like watching some terrifying science fiction movie about aliens taking over the country except that this is real and has happened. The terrible cost of this disease will dwarf that of cigarette smoking which, even now, kills 440,000 US citizens a year or ten times as many as breast cancer for example and compared to all coronary disease killing about 2,400,000 a year including those due to cigarettes. As it is, we cannot afford Medicare and as I said above, within eight years the cost of the current health system is projected to approach the total cost of the entire Federal government and we haven’t saved any money for this. Furthermore, incredibly, despite these crushing expenditures we are getting worse outcomes and longevity than countries spending half of what we do such as France and Japan.

So the focus was largely on why do we have this catastrophe and how do we do better? I’ll talk more about this later. While sitting at this conference it was depressing to watch the Republicans fighting and Bush vetoing the proposed extensions to SCHIP where the states are trying to extend to just guarantee medical coverage to poor kids who otherwise aren’t getting it where again the alternatives are ER room, much more severe problems, years of illness (these are kids!), or families going deeply into debt to keep their kids healthy.

It was fascinating to learn about how much genetics is now able to play a role in diagnosing illnesses and in even predicting high risk, but my overall take was that while it is amazing what we do now know, it is still a very very long step from here to actual drugs which take advantage of what we know to cure the diseases in question. What genetics clearly can do for us, even today, is start to inform us about when we need to live our lives with particular care because of an unusually high risk of diabetes or breast cancer or ventricular fibrillation.

Overall, I was struck by two very basic points:

1. We need to work much harder to help people stay healthy. The epidemic we face is largely avoidable. If we could reach out to the huge number of people currently at risk of type II diabetes or in the early stages and just get them to eat better and slightly less and exercise 30 minutes a day, we’d literally save this country hundreds of billions of dollars or thousands of dollars for every man, woman, and child in this country not even counting the terrible costs in lost productivity and illness and poor quality of life for those who suffer.
2. If we can just agree that the job of medical care is to keep people well or get them better and reward people for doing this well rather than paying insurers and middlemen and doctors for procedures, we would save even more not even counting again the terrible costs in lost productivity and the damage to our overall competitiveness.

I was asked in some comments since I restarted blogging to discuss what I learned while running Google Health at Google. It is a delicate subject because I’ve publicly blogged about a fair amount of what I learned and some of the rest I think is now Google’s business. So, I’ve added a sidebar listing the talks I did give publicly on health while I was still at Google. This is a starting point for learning what I learned while working on health during the last two years.

Lastly, while I was at the conference, Microsoft launched HealthVault. I want to commend Microsoft for launching HealthVault in Beta. The web desperately needs an ATM networks for health records so that we can find and connect to the expertise we need online with our health data as context be it interpreting our labs or warning us about medicine issues or helping us recover from an illness. I read a snarky blog complaining that they were copying Google Health. I don’t see it that way. They launched. They are doing a good thing. Consumers need to be able to take charge or their health data and control it. Not the federal government. Not the hospitals. Not the insurers. Us. Even if Google does launch something similar, competition is a good thing for all of us. That being said I certainly hope that Microsoft follows the principle that our health data is our data for us to control and allows those of us who put data into the health vault to easily take it out of the health vault or copy from it electronically if we so choose and provides an open doorway to those who have programs to help us make sense of our health data. But I bet they will and if so, congratulations to them.