Declaration of Health Data Rights

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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11 Responses to Declaration of Health Data Rights

  1. […] Article Adam Bosworth’s Weblog, 22 June 2009 SHARETHIS.addEntry({ title: "Declaration of Health Data Rights", url: "http://articles.icmcc.org/2009/06/23/declaration-of-health-data-rights/" }); […]

  2. David C. Kibbe, MD MBA says:

    Great post, Adam. DCK

  3. Brian Baum says:

    I was once told that “change” in healthcare cannot come from within. This message was delivered at one of the top medical institutions in the U.S. The change that is essential is the role of the consumer. The consumer must become engaged in proactively managing their health. For that to happen – innovation must occur. Tools, services, resources and highly accurate, personal and timely information must be available to the consumer in an engaging manner that motivates them to be proactive – to work in concert with their health provider team. I think the foundation lies in automating data – “liberating” data, as I heard at a recent conference. The Declaration of Health Data Rights – while intuitive, I believe is a significant step in changing how we look at this issue. Healthcare must be consumer centric – if not, why does it exist?

  4. […] Meskó in Health, Health 2.0, Healthcare, Innovation, Medicine, Web 2.0, eHealth. trackback Adam Bosworth published a very important […]

  5. […] of support to bring the health care industry into the internet and mass communication age. Adam Bosworth, the former head of Google Health, does a great job of articulating why the change is well […]

  6. […] of support to bring the health care industry into the internet and mass communication age. Adam Bosworth, the former head of Google Health, does a great job of articulating why the change is well […]

  7. Ralph Forey says:

    Those stalling the revolution are:

    Government (DHHS, FDA, Congress) + lawyers + patients concerned about privacy.

    Patients are the easiest problem to solve. Offer security + value and they will trade privacy.

    The Government? May require revolution. Our freedoms are a threat to the government. They want to control you for your betterment. Try to wrestle this control away from them (i.e., regain your freedom) and find yourself in the crosshairs. We’ve allowed them so many weapons of warfare (HIPAA, GMPs, etc.) For example:

    – Produce an offering that allows people to blog about adverse events and you fail to monitor and report these to the FDA and see what happens to your service. (483/warning letter/consent decree/sued out of business)

    – Allow people to make “mistakes” in sharing their personal health data and see what DHHS does.

    Lawyers? They’re just opportunists. Allow a patient to get bad (or even
    incomplete) advice through your offering and lawyers will make you pay! Enough said!

    Free markets will take care of everyone/everything else (doctors, hospitals, software, computing power, etc.)

    Good luck with the Gov and lawyers.

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  9. loopzy says:

    I have been searching for sites related to this. Glad I found you. Thanks

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