Give patients (that’s you) access to all their (your) data – so they can help

Cross-posted from my website, – the happy home for my new business!

I’ve just returned from Toronto, where I gave the opening keynote at the Medicine 2.0 Congress. It was titled “Gimme My Damn Data,” which is an unconventional title for an opening address, but I meant it. Here’s why.

Thanking Gunther Eysenbach for inviting meA new world of participatory medicine has been growing for years, largely unnoticed. In this new world, healthcare is not a one-way street: empowered patients are engaged in their care, actively collaborating with their physicians, sharing responsibility for their care.

The healthcare providers (doctors, nurses, etc) are still the providers, but the patients share in both the knowledge and the responsibility for how it all turns out.

And, certainly, the decision making.

This requires that patients have access to their medical data. (Whose data is it, anyway?)

As my primary physician Danny Sands, MD MPH, says, “How can patients participate if they can’t see the data?” But in today’s world (America and, I’m told, many other countries), access to our health data is anything but easy.

In the USA the HIPAA act guarantees that we can get it – but it can take months, which is absurd in a crisis. And, law or no law, Deven McGraw of the Center for Democracy and Technology reports that problems with data access are the #5 complaint in the entire Department of Health and Human Services. #3 HIPAA complaint* reported to the Department of Health and Human Services.
* Deven updated this in an email, saying “it’s consistently the third based on this HHS source.”

Clearly, what patients want and are asking for is not an accomplished reality throughout the world today. This is unacceptable. Lives are at stake. I think people – especially sick people – have a right to take their records and seek care elsewhere. (And that’s beyond the basic issue of a person having access to their data on general principle. Imagine if you couldn’t see your banking information!)

Some providers are great about this. My own medical records, which I can read anytime, are on PatientSite at Beth Israel Deaconess. But there’s still no way for me to get all the data out: I can export some information, but not all. And my hospital’s much better than most: most have no way at all to give you your data – except by fax machine.

There are many technical issues to be ironed out, not the least of which is what format the data should be in. I want to participate in projects to make something happen in this area, something all citizens can get their hands on. If you’d like to partner with me on such a project, contact me.

My slides from the talk should be online within a few days. I’m glad to say that my talk was well received, but to a certain extent I was preaching to the choir. We have much work to do.

So yeah, I meant it: give us our data, and I meant it strongly. No kidding: unleash our data!

It’ll take time. Let’s get to work.


Posted in: policy issues | positive patterns | pt/doc co-care | trends & principles | Why PM




14 Responses to “Give patients (that’s you) access to all their (your) data – so they can help”

  1. ePatientDave says:

    Okay, tweeps, my work here is done – ported "Gimme my damn data" to Snuggle time!

  2. Just so you know, I get a big happy triumphalistic grin on my face when I see or even think about your heading, “Gimme My Damn Data.” Says it all; cheers me up!

  3. arthurwlane says:

    RT @ePatientDave: Okay, tweeps, my work here is done – ported "Gimme my damn data" to #hcsm #hcHIT

  4. Star says:

    Out here in AZ, anyhow, fondly referred to as the armpit of medical care, we can take our test results home from the doctor visit and get our hosp or ER records in a week or so. You have a couple of flaming hoops–then you can read this stuff.

    And it can be interesting. Mom was tagged with being diabetic (no), with having Alz (no, senile dementia), being chronically anemic (first we heard of it) and my sister and I read a long rendition from a hospitalist about what pains we were in advocating for our mother. We were–and it’s all in there. Nice for the next doc to read–really helps us.

    • Good to hear from you, Star.

      So tell me: did you report the errors you found?

      If so, did they fix them?

      Were they able to identify how the errors got in there?

      This is a perfect example of what I mean by healthcare’s lack of ordinary modern IT practices. Imagine if you had that many erroneous facts on your credit card statement! And yet credit card entries are generally done by low-paid clerks, not healthcare professionals. The problem isn’t the people themselves – the problem is that management hasn’t yet woken up to using the tools that already exist in other industries.

      Please let me know –

  5. Star says:

    Yes–I reported the errors on a form. Supposedly this form will be the first thing that will come up when the record is next accessed. We shall see, if, heaven forbid, Mom falls again. They say they cannot take out bad info–cannot remove anything a doctor wrote–just replace it with “your version.”

    Even the credit agencies let you take out bad info. I can sort of see this, though–what if you wanted to get insurance (before the mysterious stuff we may get) and went into your records and took out your heart attacks and so on. I guess that would be a no-no. I think I have since learned how the bad info gets in there…I was told on a visit to the ER I took that there are checklists of ailments–the clerk sitting there is not typing in what the doctor says. Somehow things get checked and then added.

    I guess–I sure don’t want any fed anywhere near my info. For instance, I have “gallbladder disease.” Stones that have only acted up twice–no surgery for me (see aboveon AZ docs). What if some brainiac down the line says hmmm, it would be cheaper to operate on her than let her go screaming in pain to the ED. Can they MAKE you get surgery…as a preventive…Who knows in this mess.

  6. Sputtering here!! Arg!

    They cannot take out bad info, even if it’s ERRONEOUS?? What the hell is that about?

    I’m starting to suspect that this reveals an assumption that “Of course the doctor could not POSSIBLY have written anything by mistake.” Both your case and mine (where they said “53 year old woman”) show that’s false. I’m REALLY getting unhappy about this.

    Have you considered beating someone up (or at least potently confronting them) about how wrong that policy is? I wonder if their lawyers have considered the chance of legal liability for errors you TRIED to correct but they insisted on keeping in??

    Considering how much providers complain about lawsuits, I’d think they’d be in a hurry to prove they don’t deserve to be treated with suspicion.


  7. Star says:

    When you said you were not a woman, what did they say? Would they change it or just let you put in a conflicting report of your opinion of your gender? I scream and complain all the time about everything–it is setting off my atrial fib and BP. Most recently, my sis was in some doc-owned surgical hosp getting a hip replacment and her “hospitalist” was one I knew from his BAD medical examiner reports…I guess these hosps never check and see if these bozos put “fraudulent info in charts” or “fail to tell patients of x-ray results.” I got mad. I already have this guy listed at two hosps as never being acceptable to me should I be brought in unconscious–which of course marks me as a big malcontent.

  8. […] reached the desk of the WHO director. And it was two years before Dave DeBronkart made his now famous outcry at the Toronto Medicine 2.0 conference: “Gimme my damn […]

  9. JacobPHR says:

    I work with organizations who struggle with this on a fairly regular basis. They struggle with trying to find the balance between regulation, fear, and advocating/empowering the patient. I would say fear is the biggest coponent. Fear of errors, fear of admitting there are a lot of unknowns, etc. I like the way my personal doctor (PCP) is honest with me and tells me that there is no way he can know everything out there in the medical field. He tells me I must be a partner in my healthcare, especially in the preventative area, and I couldn’t agree more.

    Anyway – I have seen some really exciting things happening where some of the fear is waring off in small pockets that have patient access to the electonic medical record (usually via web site). Do you have any thoughts on how we can overcome this irrational fear as a wider society?

    • Sure, Jacob, this is a two year old post, and we’ve been working hard in conference speeches and blogging to change the culture… if you search this site for “testimony” you’ll see three HHS meetings where our Society advocated to let patients help, including but not limited to patients’ access to their data. That part is now Federal policy, for practices that received Medicare and Medicaid funding.

      We still have lots of work to do, but that’s what we’ve been doing. (If you join the Society,, you can participate in our member mailing list discussions, too. Membership is just $30.)

      SPM member and attorney David Harlow took on a volunteer role this year as policy chair, too, and has contributed to some Washington invitations.

      You have any ideas to add?? Join us! (Literally or figuratively.)

  10. […] medical records, which strongly support participatory medicine. (As SPM President Dr. Danny Sands once said, “How can patients participate, if they can’t see the […]

  11. […] medical records, which strongly support participatory medicine. (As SPM President Dr. Danny Sands once said, “How can patients participate, if they can’t see the […]

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