Matthew Holt

A Declaration of Health Data Rights

THCB & Health 2.0 are happy to be a small part of a very important declaration, made today by a mix of patients, physicians, technologists and concerned citizens. It’s a Declaration of Health Data Rights, and it’s extremely important because access to usable data is a very pressing problem in the health care system, and one that we have the opportunity to solve if we bake the concept into regulation and practice now, as electronic health data becomes more pervasive. Here’s the declaration:

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.

More information about how you can support this declaration, how it was created, a FAQ and what you can do to get involved is all at www.healthdatarights.org

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louis siegel, m.d.CBS RadioCarl TaylorMD as HELLnotthere Recent comment authors
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CBS Radio
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THE GOOD LIFE
http://chataboutit.com/about/the-good-life-with-jesse-dylan/
Enthrall your mind, body and spirit with the ultimate fitness experience. Jesse Dylan has 30 years of broadcast experience and polished intellect on health and wellness. His expertise, as long as interviews with best selling authors and health experts, make for a captivating radio show. Tune in to Chat About It Radio TONIGHT from 10-11 PM and enlighten your personal awareness. Take a step forward with your health with Jesse Dylan!

louis siegel, m.d.
Guest
louis siegel, m.d.

Medical-Results Reporting Deficiency Syndrome An Unrecognized Disorder of Healthcare Delivery The Declaration of Health Data Rights is a good start for coming to grips with the deficiencies inherent in the reporting of medical results to patients and doctors. If the healthcare establishment were to receive a grade for clearly communicating medical results to patients and doctors, the grade would be ‘D’, for Deficient. If that doesn’t sound so terrible consider its importance if your cancer diagnosis was missed, or delayed, just because of sloppy practices of reporting results, or the angst and difficulty associated with getting results quickly and in… Read more »

CBS Radio
Guest

THE GOOD LIFE
http://chataboutit.com/about/the-good-life-with-jesse-dylan/
Enthrall your mind, body and spirit with the ultimate fitness experience. Jesse Dylan has 30 years of broadcast experience and polished intellect on health and wellness. His expertise, as long as interviews with best selling authors and health experts, make for a captivating radio show. Tune in to Chat About It Radio on Wednesdays from 10-11 PM and enlighten your personal awareness. Take a step forward with your health with Jesse Dylan!

Carl Taylor
Guest
Carl Taylor

Matthew-Good step forward, I gave a talk in DC last week at the Internet Innovation meeting in which I shared my opinion that a ME-HR had far more value for managing health care than an EHR. As someone who creates patient centric records to touch hundreds of thousands of patients, I can at least tell you we would have no trouble defining meaningful use. And with all due respect, our patients when touched by a combination of Health 2.0 and Humans 1.0 become compliant and manageable.
Carl Taylor Asst Dean USACOM

MD as HELL
Guest
MD as HELL

Medical records will become useless pablum. The real record, the one everyone is worried about, will become separate and invisable. Doctors will still need ammo against litigation. They are not going to hand over the gun that then shoots them in the head. Patients (not the ones bloggin here, of course) will still be noncompliant and unmanageable.

notthere
Guest
notthere

May be we need to look after democracy here before we tell other countries how to live. I’ve had enough of the posturing, lying, propaganda and hypocrisy. It’s time to hold feet to the fire. We’re not going to get the obvious, sensible and real solution to US healthcare which is single payer, (No, that doesn’t necessarily exclude private insurance.) combining Medicare, Medicaid, SCHIP, Federal, VA and the military, dumping all the unnecessarily different bureaucracies, and building a realtime medical IT system. The X-factor insurance costs. If any of our representatives and senators want to vote against a federally funded… Read more »

Matthew Holt
Guest

Peeps, calm down. This is about making it natural and normal that providers, plans, government, labs and everyone, turn over a COPY of their data to patients/citizens. It’s implicit within HIPAA that providers do this, but it’s not enforced and can take forever and cost hundreds of dollars.
This is a movement to make this natural & real. As David Kibbe says, this should be displayed in every doctors office.
It’s NOT about stopping providers and others using that data lawfully as they currently do.

Margalit Gur-Arie
Guest

This is good stuff. Just one question, aren’t all these rights guaranteed under HIPAA already? Are we just saying that HIPAA should be enforced?

John R. Graham
Guest

How will you ensure that the U.S. government does not have this data, especially with all the billions of dollars the government is throwing around to bail out health IT?

Eric T.
Guest
Eric T.

This is so long overdue. Honestly, why do Doctor’s have the right to hide our own personal information from us? It should be a right just like freedom of speech, to do what we please. I think Google Health may be just the type of tool we need to take our freedom back. You can check out Google Health at http://www.google.com/health
Eric @ JAZD Healthcare http://www.jazdhealthcare.com/sitemap

inchoate but earnest
Guest
inchoate but earnest

Allow me to lend comfort, Anne – your post here is data, and it may be mined for whatever value someone finds in it. That’s the extent of what any LA Times reporter can possibly know about the terms of PatientsLikeMe’s “data-mining deals”.
And if you’re still distressed, take a hammer to your computer, your phone, and maybe your garbage pail.

Anne
Guest
Anne

Curious about the comment at http://www.gooznews.news on this:
“The Los Angeles Times covers formation of a new non-profit group called HealthDataRights.org, which is pushing for universal patient access to electronic medical records. While the paper reports that its founder, James Heywood, also runs Patients Like Me, it doesn’t reveal that the patient networking website is venture-capital funded and has signed data-mining deals with drug companies and other medical providers. . . . ”
This seems worrying and makes me suspicious. If data-mining deals are involved, I don’t want to be!!

Kathleen
Guest
Kathleen

This simple version will probably be better received than the more complex text of the ICMCC Foundation referred to above. Although I agree with the sentiments here and like this idea, I note that this list does not include the *right to report corrections*. The right to at least report corrections to your medical records seems like an essential right too, and neccessry for safety.
P.S. The grammar in the final version will need some work. For example, “We the people: Have the right to our (-their) own health data.”

Jack E Lohman
Guest

Yes, health data must be private, but what happens if a person collapses 1000 miles from home? This data must be in a national database to compare with other patients with like diseases and accessed by the physician with patient approval (or by thumb print if the patient is unconscious).
Jack Lohman
http://SinglePayer.info

Healthcare Guru
Guest

Would it not become easily possible if one were to merge EHRs with PHRs?
I am not sure if I have seriously looked at my medical records ever, but if a physician is writing a note which is more of a thought or reminder….knowing that information might make me worry unnecessarily.
Knowledge and ingonance both are bliss in medicine if we use wisely. I am not talking logic but human behavior.
rgds
ravi
blogs.biproinc.com/healthcare
http://www.biproinc.com