Talking to DC

October 29, 2009

Warning. This is a rare nerdy technical post more for. It is about Healthcare XML standards.

I’ve was kindly asked to testify at a meeting in DC this week about standards at an hour when I’m normally not awake. But despite a deep aversion to not getting enough sleep, I was up and on the phone. What made me do such a thing? Well, the discussion was about what actually will work in terms of making health data liquid. What standards should be used for the integration of such data?

Somewhat to my surprise and usually to my pain, I’ve been involved in several successful standards. One was used to exchange data between databases and consumer applications like spreadsheets and Access. It was called ODBC and worked surprisingly well after some initial hiccups. Another was the standard for what today is called AJAX, namely building complex interactive web pages like gmail’s. Perhaps most importantly there was XML. These are the successes. There were also some failures. One that stands in my memory is one called OLE DB which was an attempt to supplant/replace ODBC. One that comes close to being a failure was/is the XML Schema specification. From all these efforts, there were a few lessons learned and it is these that I shared with DC this Thursday. What are they?

  1. Keep the standard as simple and stupid as possible. The odds of failure are at least the square of the degrees of complexity of the standard. It may also be the square of the size of the committee writing the standard. Successful standards are generally simple and focused and easy to read. In the health care world, this means just focus first on that data which can be encoded unambiguously such as demographics, test results, medicines. Don’t focus on all types of health data for all types of health. Don’t focus on how to know if your partner should have access to what (see points 2,3, and 4 below).
  2. The data being exchanged should be human readable and easy to understand. Standards are adopted by engineers building code to implement them. They can only build if they can easily understand the standard (see above) and easily test it. This is why, in the last 15 years, text standards like HTTP, HTML, XML, and so on have won. The developers can open any edit editor, look at the data being sent/received, and see if it looks right. When Tim Berners Lee first did this on the internet, most of the “serious” networking people out there thought using text for HTTP was crazy. But it worked incredibly well. Obviously this worked well for XML too. This has implications. It isn’t enough to just say XML. The average engineer (who has to implement these standards) should be able to eyeball the format and understand it. When you see XML grammars that only a computer can understand, they tend not to get widespread adoption. There are several so-called XML grammars that layer an abstract knowledge model on top of XML like RDF and in my experience, they are much harder to read/understand and they don’t get used much.  In my opinion Hl7 suffers from this.
  3. Standards work best when they are focused. Don’t build an 18 wheeler to drive a city block. Standards often fail because committees with very different complex goals come together without actual working implementations to sanity check both the complexity (see point 1 above) and the intelligibility (see point 2 above). Part of the genius of the web was that Tim Berners-Lee correctly separated the protocol (HTTP) from the stuff the browser should display (HTML). It is like separating an envelope from the letter inside. It is basic. And necessary. Standards which include levels or layers all jammed into one big thing tend to fail because the poor engineers have to understand everything when all they need to understand is one thing. So they boycott it. In health care, this means don’t include in one standard how to encode health data and how to decide who gets it and how to manage security. If all I, as an engineer, want is to put together a list of medicines about a patient and send that to someone who needs it, then that’s all I should have to do. The resulting XML should look like a list of medicines to the me. Then, if it doesn’t work, I can get on the phone with my opposite number and usually figure out in 5 minutes what’s wrong. Also I can usually author this in a day or two because I don’t have to read/learn/understand a spec like a telephone book. I don’t have to have to understand the “abstract data model”. The heart of the initial XML spec was tiny. Intentionally so. I heard someone say indignantly about the push to simplify Health IT standards that we should be “raising the bar on standards” not lowering them. This is like arguing that we should insist that kids learn to drive an airplane to walk to the next door neighbor’s house. All successful standards are as simple as possible, not as hard as possible.
  4. Standards should have precise encodings. ODBC was precise about data types. Basic XML is a tiny standard except for the precise encodings about the characters of the text, Unicode. That is most of the spec, properly so, because it ensures that the encodings are precise. In health care this means that the standard should be precise about the encodings for medicines, test results, demographics, and conditions and make sure that the encodings can be used legally and without royalties by all parties. The government could play a role here by requiring NPI’s for all doctor related activities, SNOMED CT for all conditions, LOINC for all labs, and some encoding for all medicines (be it NDC, rxNorm, or FDB) and guaranteeing that use of these encodings is free for all use.
  5. Always have real implementations that are actually being used as part of design of any standard. It is hard to know whether something actually works or can be engineered in a practical sense until you actually do it. ODBC for example was built by many of us actually building it as we went along. In the health care world, a lot of us have built and used CCR as we go, learning what works and what doesn’t very practically and that has made it a good easy to use standard for bundling health data. And the real implementations should be supportable by a single engineer in a few weeks.
  6. Put in hysteresis for the unexpected. This is something that the net formats do particularly well. If there is something in HTTP that the receiver doesn’t understand it ignores it. It doesn’t break. If there is something in HTML that the browser doesn’t understand, it ignores it. It doesn’t break. See Postel’s law.  Assume the unexpected. False precision is the graveyard of successful standards. XML Schema did very badly in this regard. Again, CCR does fairly well here.
  7. Make the spec itself free, public on the web, and include lots of simple examples on the web site. Engineers are just humans. They learn best by example and if the standard adheres to the points above, then the examples will be clear and obvious. Usually you can tell if a standard is going to work if you go to a web site by the group and there is a clear definition and there are clear examples of the standard that anyone can understand. When you go to the HL7 site the generality and abstraction and complexity are totally daunting to the average joe. It certainly confuses me. And make no mistakes. Engineers are average joes with tight time deadlines. They are mostly not PhD’s.

Let’s be honest, a lot of standards are written for purposes other than promoting interoperability. Some exist to protect legacy advantages or to create an opportunity to profit from proprietary intellectual property. Others seem to take on a life of their own and seem to exist solely to justify the continued existence of the standards body itself or to create an opportunity for the authors to collect on juicy consultant fees explaining how the standard is meant to work to the poor saps who have to implement it. I think we can agree that,  whatever they are, those are usually not good standards. Health data interoperability is far too important an issue to let fall victim to such an approach.


Learning from customers

October 13, 2009

We have been truly blessed here at Keas. We have amazing partners in Quest Diagnostics, Healthwise, CVS MinuteClinic, Dr. Alan Greene and the DiabetesMine/Joslyn team of Amy Tenderich and Dr. Rich Jackson. We have a great team within Keas. And we received some extraordinarily supportive news reporting about Keas during the last week including The New York Times and Fox Business as we opened up a public beta for everybody. We are truly grateful.

For those of you who missed this news, Keas now has an open, free public beta at www.keas.com.

What is Keas? Keas brings you the best medical minds to deliver personalized help so that you can start to take charge of your health. These health experts build personalized expertise into a Keas Care Plan, based on the very same questions and feedback that occurs in person, during an office visit. In other words, these Care Plans look at or ask for your data just as health experts would. Given that data, Keas Care Plans can help you understand your health by charting the results that matter, indicating whether you are where you should be (in the green), have some risks (in the yellow), or clearly need serious attention (in the red). And because they are developed by health professionals who understand the nuances of health issues, Care Plans deliver “to-dos” for you to see at a glance what steps to take to get in the green and stay in the green.

We also announced a wonderful strategic alliance with Quest Diagnostics. If your doctor orders a blood test to be taken at a Quest Diagnostics Patient Service Center, when the results come in Quest and your doctor will help get your data into Keas. In addition, as part of the strategic alliance, Quest Diagnostics has worked with Keas to help interpret your data, based on your personal health status, as falling in the red, the yellow, or the green. It is another layer of expertise that offers you the best advice for taking charge of your health.

Thanks to the news coverage and our partnership with Quest Diagnostics, we are now getting large numbers of users each day. And that brings us yet another layer of expertise – you, the user.  As we develop communities based on individual Care Plans, your knowledge and wisdom will be invaluable to those who share your specific health concerns, and we’ll provide the tools for peer-to-peer support. In addition, we at Keas need your smart observations: we can only make our services great and truly useful with your help. We want to know from you what Keas Care Plans you need that we haven’t built. We want to know which Care Plans can be better and how. We want to know which “to-dos” need to be improved and expanded, and your preferred modes and frequency of messaging. We want to know what Keas should be doing for you that it isn’t already doing in order to provide the best personalized help from the best medical minds. So please keep your feedback coming.

Our commitment to you is that we will learn and work hard and steadily to fix the things that need fixing and add the things that need adding. Working together over the next few months, we can make Keas the tool you need to understand your health and take charge of it, with help from the best health experts and from each other. It is an exciting time.

If you are a health expert and want to join us in building Care Plans for your patients, please email us here.


Learning from data

October 5, 2009

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.


A viscious lie

August 30, 2009

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.


Aspen Health forum

August 10, 2009

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.

__________________________________________________________________________________

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

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.
When we endorse and support these rights, the rest will follow slowly but surely.

Those of us, all over the world, who can innovate online will deliver to humans the tools that take their data into account and help them best understand and manage their health. We will connect them with your expertise. You will be able to advise, based on their detailed data, not 100′s of patients, but 100′s of thousands. We can and will team up with you to make this happen.

IF we provide incentives for being healthy (e.g. compliant with a regime, not obese, not a smoker, routine exercise, regular preventative care) the rest will follow very quickly.

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


The tide is changing

July 26, 2009

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.


Declaration of Health Data Rights

June 22, 2009

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.


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