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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17 replies »

  1. 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!

  2. 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 a form that is clear and understandable.
    It is a distorted and unacceptable standard of care that causes patients to rarely receive complete written reports of their results, in terms they can understand, and which grants originators of reports, for example, consultants, pathologists and radiologists, immunity from communicating their findings directly to patients.
    Such isolation of patients from their medical truths and the medical profession’s culture of insulating originators of results from their obligation to communicate and deliver results clearly, to both patient and ordering provider, contribute to delayed and missed diagnoses.
    For example, breast cancer is the most frequently occurring cancer in women and the second leading cause of death. Yet the common method of reporting complex, yet so-called ‘Normal’, mammography results to women is often trivialized to a telephone call or card in the mail
    Dense breasts are common in women under fifty and can obscure tumors that are present making them impossible to see on mammograms. Yet, when no cancer is ‘seen’ on mammograms in women with dense breasts, mammography centers will still commonly report these mammograms as ‘Normal’, a conclusion in conflict with the known limitations of the technique. Instead of sending a card that says ‘Normal’ why not have the radiologist report directly to the patient: ‘Because your breasts are dense your mammogram was inadequate for determining if cancer is present. There is other imaging that may be more sensitive. Please call me to discuss’. I know the arguments against this approach, but, they are mostly weak.
    Pathology reporting methods often conform to the structure of a ‘standard form’ requiring a ‘Normal’ or ‘Abnormal’ box to be checked while significant, often conflicting, details are relegated to easily overlooked, but critical comments by the pathologist written in fine-print.
    A good example is a pathology report in my possession where the box labeled ‘Normal’ is checked. A quick glance at the checked box would suggest there is no cancer, and that is what was reported to the patient. However, in very small print, the pathologist states the following:
    “However, 3 positive (‘cancerous’) cells were noted which is below our cutoff for a positive result (greater than or equal to 4 positive cells). Suggest repeat if clinically indicated”.
    This patient was one cell short of a diagnosis of cancer and yet was assigned to the ‘Normal’ category! Should not the pathologist communicate directly to the patient and in bold, large p
    “Your biopsy revealed 3 positive (‘cancerous’) cells which is just below our cutoff for a positive result (greater than or equal to 4 positive cells). I suggest this test be repeated if clinically indicated. Feel free to call me or your doctor for details’. Same arguments for above apply.
    The formats in which blood and other laboratory results are presented to doctors are ancient and cryptic. It is not uncommon to find an ‘out-of-range’ PSA (prostate specific antigen) result buried in between a host of other normal results making recognition difficult, and oversight common. Worse the patient’s sequential history of lab values, an essential component in evaluating the importance of any one result, rarely accompanies the current result. Does not a way out of range PSA, a marker for possible cancer, at least deserve a page of its own”: “NOTE: YOUR PSA IS ABOVE OUR REFERENCE RANGE. YOU SHOULD CONSULT YOUR DOCTOR.”
    The examples I have shown here are, unfortunately, just a few that represent the flawed state of reporting medical results to doctors and patients.
    Effective communication of medical results must be a process shared by the originator of the results, the PCP, and the patient. This, of course, represents a fundamental change in the way patients, PCPs, and data originators think about their relationships to each other as regards the reliable and effective communication of medical results.
    The informational cocoon in which doctors now work is no longer tenable today, and their luxury of being communicatively remote from their patients is something we can no longer afford, not with the rates of dysfunctional reporting that seem to prevail. There has to be closure in the loop of information origination and communication, and an elevation of the amount of transparency and responsibility that accompanies the generation and transmission of medical results.
    The emergence of Electronic Medical Record Systems will likely not address this issue and may even compound it by insulating the originators of medical results further from the human subjects of their work. Bringing doctors and patients closer together, not farther apart, is the principal challenge any future collection of healthcare delivery systems must overcome and a key ingredient in improving the clarity and quality of information exchange.
    The culture of medicine is deeply ingrained and practitioners are hardened to a practice style that is wedged deeply between the wish to provide quality care, inadequate reimbursement, and the ever present danger of incurring malpractice.
    Indeed, one of the biggest obstacles to be faced in creating an environment of responsible reporting of medical results to patients will be the fear of increased liability incurred by giving patients more information then is the current practice.
    The other obstacle to be faced will be the acceptance of the concept presented here that the originator of medical results is responsible for reporting those results to the patient.
    Here is my suggestion for a ‘cure’. I think we need to form an:
    ALLIANCE for RESPONSIBLE REPORTING of MEDICAL RESULTS TO PATIENTS©
    ARRMED to OBTAIN THE BEST HEALTHCARE©
    I see this as a voluntary ‘alliance’ of individual practitioners, including primary care doctors, radiologists and pathologists, persuaded by their inherent desire to help their patients and encouraged by their professional organizations to voluntary agree to adopt ARRMED’s principles of responsible reporting.
    I see the ‘alliance’ extending to all good institutions, hospitals, and major cancer centers that would support and participate in ARRMED’s mission.
    I see the ‘alliance’ also being grounded on educating patients about the urgent need for this change and the role of ARRMED in empowering them with the knowledge and tools to petition their doctors to engage in and support this change.
    A proposed set of Principles and Mission Statement:
    ALLIANCE for RESPONSIBLE REPORTING of MEDICAL RESULTS TO PATIENTS©
    ARRMED to OBTAIN THE BEST HEALTHCARE©
    The Ten Principles of ARRMED are:
    1. Patients are the primary beneficiaries of all medical results created for their benefit.
    2. Patients are entitled to receive all medical results as soon as they are created.
    3. Patients are entitled to receive medical results in terms they can understand.
    4. Patients are entitled to receive the same reports sent to their physicians.
    5. Patients are entitled to receive their results directly from the originator of the results.
    6. Patients are entitled to receive their results directly from their primary care doctor.
    7. Patients are entitled to know if test was sufficient to answer the reason for the test.
    8. Patients are partners with their providers and share responsibility obtaining results.
    9. Patients must learn to become owners of their health.
    10. Patients must learn to become owners of their health information.
    The Mission of ARRMED is to build a community of healthcare providers who believe in these Principles and are willing to commit to their patients that they will cooperate in achieving the goal of responsible reporting of medical results. It is also the Mission of ARRMED to educate patients about the need to take responsibility for their health and healthcare, and to teach them how to become empowered patients and complementary partners in their healthcare delivery process.
    Louis Siegel, M.D., June 24, 2009

  3. 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!

  4. 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

  5. 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.

  6. 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 public option, how about they give up their federal healthcare. Give them an extra $12,700 a year or so (the average family cover 2008), no tax break, and let them find their own.
    And with ethics oversight to make sure they don’t get deals or care other people can’t.
    Let’s see if they like the insurance company control over their doctor’s choices and their choice of doctors. Let’s see what they call rationing. See how they like having to employ someone to fight their bills for them — god knows they are too incompetent to do it themselves. Let’s see what they think about nationalised health, socalization, and socialized medicine then.
    Below’s what I already sent my senator and rep (Klobuchar/Ellison) with some modification for them. We need a whole load of people to put these shits in a position of shame. We need this to spread exponentially. I’m going to spend the next few hours working the blogs and internet talking about healthcare, and hit all the Senators and as many reps as possible (though most won’t accept non-constituents).
    Help me, please. Hit all blogs, reps, sens, etc.
    I recommend putting this somewhat in your own words.
    ==============================
    Representative/Senator ———,
    I write to you concerning healthcare.
    I understand the inertia impeding the attempt to make healthcare cheaper, more effective and efficient, far less complicated, and universal. Single payer, which would not necessarily mean no private insurance, is the way to go. Adding a publically (federally) funded option is a key if small, and complicating, step on this route.
    In order to avoid any perceived conflict or hypocrisy, I recommend that any senators or representatives voting against a public option renounce their federal healthcare coverage and receive an additional $12,700 per annum (or equivalent, as this was the average health insurance family coverage premium in 2008), no tax breaks (like every other private insuree), and ethics oversight to prevent insurance company favoritism in cost, coverage or service, or federal help in fighting the bills or for care.
    Let’s see who is against a public option then.
    I thank you for your service.
    Sincerely,
    My name
    ========================================
    One of the Republican “talking points” is to tell anyone that is rich and says that they are willing to pay higher taxes to “Go ahead; pay more taxes. Send a check to the IRS.” Let’s all start hitting these people.
    The young may not think this matters but I have been in the States almost 30 years and healthcare has gone from 8 to 17% GDP of a much bigger GDP per capita. 30 years from now?
    The CBO itself says it is not mostly about the baby boomers but rising health costs.
    Please take time to put this out. Can we make this national?
    Write.
    Thanks.

  7. 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.

  8. 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?

  9. 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.

  10. 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!!

  11. 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.”

  12. 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

  13. 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

  14. The operative words “should be” self evident speak volumes to the challenge we face. I believe this declaration is a profound statement that should bear the force of law and serve as a litmus test for evaluating strategies, policies and commitment of any funds – certainly federal funds to the advancement of electronic health information initiatives. I applaud the efforts of those that formulated this position.

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