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Dedication: This post is dedicated to Regina Holliday and to the memory of her husband, Frederick Allen Holliday, who passed away on June 17. Regina’s story has energized many of us to create the Declaration of Health Data Rights we are asking you to endorse on a website or via twitter.

Definition: Data in a computable format means that its contents can be understood and acted upon by a computer software program. Data on the Internet is increasingly in the form of electronic standards, such as XML (Extensible Markup Language), that allows sharing between computer systems and some action or actions to take place without human data entry being necessary. For example, if a patient’s prescribed medications can be automatically assessed to determine if there are potential risky interactions, then that data is computable. Similarly, people upload video from their cell phone to YouTube because these individual video streams are computable.

The world in 2009 is very different from anything we have seen before. The connected age has invaded all societies and the possible repercussions are just starting to emerge, driving us into the age of consequences.

In the last 10 days we have witnessed how Twitter and YouTube have become the ultimate enemies of the Iranian leaders who tried to use the classical tools of democracy to hide a dictatorship. Once and for all we know that transparency trumps opacity! The Iranian  government’s tight control of media and the Internet has spawned a generation adept at circumventing communication roadblocks, making the country ripe for a technology–driven protest movement.

The helicopters, the Basajis and all the other tools of mass fear have failed because individuals in Iran have found a way to own and control the data that is important to them at this point. The demonstrators have been using simple text messaging and videos shot from their cell phones to collect, document and transmit the visual data elements that are helping us understand the health of a nation, in real time. Their tweets, use of hashtags and uploaded images have made all of us instant witnesses. In just a few days, they have shown all of us that citizens data rights are the defining rights of our era and that data hugging is no longer possible and will cause the failure of established systems trying to control & limit data flows.

At the same time, much action is taking place in Washington DC about healthcare reform. Not a day passes without the President or a very senior member of the administration mentioning that we, as a Nation, must reform the healthcare system this year or risk a future similar to GM. Pretty grim assessment, if you ask me.

There is a general consensus about the tools that should be used to succeed in this reform. Everybody talks about the Electronic Health Record and the need to create systems that in the end will be interoperable at some level, so that the data flows can be facilitated. The experts are talking about an horizon of at least 6 and maybe 10 years before these systems are implemented and active in most of the US.

I cannot help but be shocked that young students in Tehran have, today, the ability to transmit, freely, in real time and against all odds, instant reports, images & videos (just 3 types of data element), while we, sitting in a country that prides itself to be the most advanced in the world, cannot, in general, have access to any of our health data without delay and at no cost.

I cannot accept any longer, the excuses coming from within the system to explain why I am denied this access. And neither should you!

Too many of the blog posts I have written over the last year document failures of knowledge, science, medical care and recording of all medical events because the patients have never been given, as a matter of fact, access to their health data! e-Patient Dave data transfer story provided the last proof we needed to show that healthcare reform cannot happen as long as the patients are treated as anything else than the most important stakeholder! And healthcare reform in the contemporary world cannot happen until the most important stakeholder has access to his/her health data. Just today an article showed that patients are often not told about abnormal test results.

As a Nation it is time to stand up and call for the universal recognition of our rights to access, whenever we want, a copy of any or all parts of our health data. Read the Declaration and think about it, please! It is written to start a national conversation about a topic that is fundamental and often misunderstood or just unknown. The endorsers come varied horizons, from individuals, not-for-profit organizations and  corporations, large and small. We are all in agreement that these health data rights are basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient.

Please join us in making sure we have all the possibility to improve the healthcare system by taking ownership of our health and of our health data! Endorse these Rights!

Today I proudly join together with a group of leaders across health care working to establish this 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:

  • Have the right to our own health data
  • Have the right to know the source of each health data element
  • 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
  • Have the right to share our health data with others as we see fit

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


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