What part of “Give us our damn data” do you not understand?

Yesterday I attended “How Access to Information Can Empower Patients and their Caregivers,” conducted by the Consumer Partnership for eHealth. CPeH is an alliance of stakeholder groups sponsored by the National Partnership for Women and Families. It has no web site of its own – it’s just a Partnership for Consumer eHealth (duh), convening to work on accomplishing good health through IT – especially health data.

An incredible moment (and I don’t say that often) happened after three physicians presented how their organizations are giving patients access to their medical records online. Their presentations were all encouraging. But during Q&A we got down to the nitty details, and comments from two physicians revealed a well-meaning attitude that I can only describe as protective and paternal:

  • Concern about emotional impact of bad news
  • Concern about the difficulty of interpreting some reports: “Even I can’t understand radiology reports sometimes.”

Regina Holliday was there – the “73 Cents” artist whose husband died of kidney cancer in June. Ted Eytan MD, an avid advocate of patient empowerment, asked her thoughts. With a cold clear look in her eye she said:

When I finally got my hands on his medical records – a month after I asked for them – I saw that on 3/25, 3/26, 3/27 and 3/28 they mentioned an 8cm tumor in one kidney and 10cm in the other, a large growth in the abdomen, bone mets in the pelvis, sacrum, femur, and skull, and soft tissue mets throughout the lung; at the end the reports say they couldn’t get a good image “due to patient’s extremely distended bladder.”  The nurse’s notes of 4-7 also mention concern over urine retention.
After another CT on 4-10, then the radiologist comes to me to tell me verbally that the patient’s bladder is on the point of rupture.
My husband almost died from a ruptured and infected bladder, while in the care of hospital staff, because nobody read the record.  I could have read it and known he needed a catheter.

What came next was telling: a physician, meaning well I’m sure, said “Well, we can sit here – we’re all college educated …” and Regina said “I’m not.”

What lessons can we take away?  I’ll start:

  • You don’t have to be an MD to contribute value from seeing the record.
    • Consider the Minnesota kidney cancer tragedy two years ago. (A cancer patient awoke to find that the wrong kidney had been removed. It traced back to an error in the first dictated report.) If the family had seen the doctor’s notes they could have spotted the wrong-side error.
  • As internet visionary Clay Shirky has said, “Giving patients access to their medical records will just naturally improve the quality of what’s in there. It’s like the way you clean up when you know company’s coming.”

Regina summed it up in an email today: “Have they met the folks on ACOR? Might open their eyes.”

Perhaps protective paternalism should be inverted: DO show us our data, to help us save our own butts from medical error.

Now that I think of it, who wouldn’t want to let us help save our own family members?

What a fitting fulfillment of the meeting’s title – “How Access to Information Can Empower Patients and their Caregivers.” Thanks to CPeH and the National Partnership for an important meeting.


Posted in: hc's problem list | medical records | policy issues | pt/doc co-care




55 Responses to “What part of “Give us our damn data” do you not understand?”

  1. bobcoffield says:

    RT @ePatientDave "What part of "Give us our damn data" do you not understand?" @ReginaHolliday rocks CPeH http://is.gd/5otfo

  2. […] Dave in his post on e-patients.net did a nice job of summarizing the feeling on the part of the patients in the room, so I’ll […]

  3. Ted Eytan says:

    Thanks, Dave and Regina, for being in the room, yesterday.

    I just posted what was going on for me during the session on my blog.

    Even though I was not one of the two physicians you called out above, I feel that there must be a big information assymetry at the level of physicians making these decisions about what to share, just as much as there is in the exam room between doctor and patient, and if we tackle that, we’re going to make a lot of progress – “if two people have the same information, they’re likely to come to the same conclusion.”

    I don’t know how to have a conversation like this without the patient in the room. And thanks to you and Regina and so many others, we don’t have to. Thanks again,


  4. Having doctors telling patients they need to be protected of painful/dangerous/hard to understand information is as absurd as having the Federal Government checking the results of each one of your Google searches before you have access to it.

    Ted, I think the most important work you can do for all of us is to convey an amazingly simple message to your fellow doctors and other health professionals:

    “Just Let Go!”

    If every doctor learns to just let go of what they have mistakenly been taught represents control, medicine and their own practice of it will dramatically improve.

  5. "Doctors, Just Let Go!" is my comment on "What part of "Give us our damn data" do you not understand?" http://is.gd/5otfo

  6. Of all the powerful posts that have appeared on this blog, this has to be one of the most I’ve read. Should be required reading for medical students as well as those already in overworked and possibly jaded practice.

  7. Dave, Bravo!

    You’ve shined the light directly on the key underlying assumptions guiding physician behavior and health system processes:

    “a well-meaning attitude that I can only describe as protective and paternal:

    ■ Concern about emotional impact of bad news
    ■ Concern about the difficulty of interpreting some reports”

    Perhaps these assumptions are logically defensible in past eras — where knowledge assymetry between patient and physician was structural.

    But today we’re living in the information age — the assumptions are logically indefensible.

    Physicians, tear down your assumptions.

  8. Thank you for this. Without going into a long history of many sordid trials and tributations, it may well be that certain doctors continue to have this philosophy and I may add, rather than just emphasizing doctors, it should be healthcare providers. I am very fortunate to have 2 primary care hcps which stand above the crowd. The path to getting there was not simple as we know. I only recently found out that a family member who died had not one but two primary malignancies. I was STUNNED. Can I repeat this – STUNNED. It has implications for our family genetic history. Who is protecting whom? It is not only a philosophy but also system issues. In fact, what we do need is a GINA for Patients Rights and forget HIPPA/privacy because they most often are used as excuses. Let me ask this question: (rhetorical) – hospitals have all of the rights to patient data – odd this concept. Without patients there would be no hcps. Fortunately for hcps there is no shortage – of patients, that is. So as not to bore anyone I won’t go on and on……..preaching to the choir again, sorry.

  9. Article: What part of "Give us our damn data" do you not understand? | #hcn #epatient #hcit http://ping.fm/3NEU6

  10. We need a societal shift in thinking. Full and free access to data should be viewed as a right. I should have the right to see my health care data; as much as I have a right to vote, a right to jury of my peers, a right to speech and right to assembly. We the people can choose to then exercise or rights or… not. But it should be our choice. Throughout history those in power have excluded others by excuses: we are not educated enough or smart enough to exercise our rights. In this debate, we have been effectively silenced. Because those who have been the most impacted have been lost. It is up to the rest of us to stand up for the fallen ones.

    It was hellish for my husband and I to watch his slow descent toward death. But the most painful thing, of all the really horrible things that happened, was lack of access to the medical record. How can you decide what to do or what is the best course of action when you are left in the dark? I cannot say this enough, it is the patient’s right to choose the course of action. Informed consent is a joke without complete access. It is hard to hear a bitter truth, but the pleasing lie can do far more damage.

  11. Ricardo Davis says:

    Agreed — the table needs to be turned. Patients need to OWN their information (as in electronic PHR); health care providers should USE the PHR’s data as the definiative source of information for the patient and ADD to that information from the provider’s EHR during the care of the patient.

    Check my comments on what this would look like and the positive impact on privacy and security at Modern Healthcare’s site: http://bit.ly/66Sqnc

  12. RT @cindythroop: What part of “Give us our damn data” do you not understand? http://bit.ly/5xHORo #hit #hie #hitpol

  13. David Locke says:

    Nobody reads a medical record. It is an artifact of the legal system. It provides a defense.

    The data in the record must be considered suspect. When EMS shows up, they do not listen to the first aider, because what they have to say is legally irrelevant. The EMS tech can’t go into court and say, well Joe here provided trend data. Instead, they start without trend data, so time passes to establish a trend. Same thing when the patient gets to the emergency room. There is no continuity of care.

    My step-father died, because nobody read his record. They claimed it was misplaced. It was, however, a hospital where people went to die, and that hospital’s job was to let him die. They did their job.

    Nothing in a medical record is trusted by a doctor unless they wrote it or ordered it.

  14. The most important point being made here is that we don’t (yet) need a technology driven system for analyzing the EMR/PHR – but a system for making it accessible – the data and maybe a simple glossary.

    Let the motivated read, let the motivated ask questions, let the motivated move forward.

    Even as a technologist in IT, I think the concepts of specific skills and technology are overrated at this point, and access is the most important issue of all.

    Great article. Thank you.

  15. David Locke says:

    The big fail will be the idea that the glossary will be simple. Is the culture and meaning across disciplines so flat that a simple glossary will do?

    Do particular practitioners have their own meanings to terminology? Examples from outside medicine: capital to an accountant and an economist, not the same thing at all; demos to marketers, and programers, again, not the same things.

    Meaning is embodied in populations as cultures. Those boundaries are real. Terminology collides. IT typically doesn’t care. That leads to unfortunate costs in the typical business. Medicine will be typical as well if you insist that terminology can be captures in a simple glossary.

  16. I received this update today from Christine Monahan at the National Partnership, host of the event:

    I have 2 announcements for you this morning:

    1) A full recording of Monday’s CPeH forum can be accessed here: http://npwf.na4.acrobat.com/p53175800/. We will also be posting a link on the e-community.

    2) As was mentioned at the forum, the Institute for Healthcare Improvement will be hosting a free WIHI broadcast on “Open Notes and the Electronic Medical Record” tomorrow (Thursday) from 2-3pm EST. For more information and to register, go here: http://www.ihi.org/IHI/Programs/AudioAndWebPrograms/WIHI.htm

    I haven’t listened to the audio – I’m sure I transcribed people’s words imperfectly. If there are any gross errors let me know.

    I plan to attend the IHI’s broadcast Thursday – one of the two speakers is Tom Delbanco MD, of my hospital (Beth Israel Deaconess), who heads up their “Open Notes” project, funded by Robert Wood Johnson Foundation. Open Notes is an experiment to give patients access to their physicians’ visit notes. I sure hope it’ll be a great success, and I’m eager to see that they have to say!

  17. Though there may be concerns with regard to providing patients with access to their own medical records, in the end, transparency has been proven again and again to be a powerful means of promoting effectiveness and change. When more eyes are able to see information, another perspective is made available and the risk of omission is reduced. That someone else may see the information also puts on the onus on those providing and interpreting the information to recheck the details.

  18. SusannahFox says:

    Also related to @kevinmd post: RT @ePatientDave What part of "Give us our damn data" do you not understand? http://is.gd/5otfo

  19. thomas goetz says:

    that quote from @epatientdave's cri de coeur http://bit.ly/5xHORo (via @susannahfox)

  20. I don’t think anyone has ever accused me of paternalism, but I have a gripe with this. I strongly believe that emotional issues impact
    patients’ medical issues. I like to identify the emotional issues as well as the medical ones, and be open about them in the chart, to better inform the other physicians who treat the patient. I would have to omit this information if patients routinely read my notes.

    Otherwise I am ALL for patient information and empowerment. It’s THEIR bodies, after all.

    Doc Meryl

    • Jane says:

      I was recently denied my medical records because of those notes. Rather than send me whatever the doctor’s thoughts were, they claimed to have lost my notes. I insisted. Then they sent me a handwritten record rather than the original record sheet, but that sheet omitted important data. This went back and forth for months until I got my record back as a photocopy that clearly had white-out used to hide comments. Why not take the angle of your opinion being important, and if they don’t like it, they can shop around for someone else?

      • Interesting point, Jane – providers COULD take the view that their opinion is valuable (even if unflattering), and patients who don’t like it should shop around elsewhere.

        Anyone have any thoughts on whether that’s practical?

        For instance I could imagine an unhappy patient broadcasting on RateDoctors.com “This jerkface felt that I was blah, blah, blah. Don’t go to her.”

        HOWever, I’d expect that as soon as we have lots of doctor rating sites, the public will learn to devalue any flaming remarks, just as we devalue negative restaurant reviews on Yelp that are inconsistent with other comments.

        I dunno… but I think Jane’s got a point. You?

  21. Ed Bennett says:

    RT @SusannahFox @ePatientDave What part of "Give us our damn data" do you not understand? http://is.gd/5otfo

  22. So, how’s this for odd: Doc Meryl is a college classmate (whom I never met – I only know her thru alumni news) who just popped up in life today for an unrelated reason. Through the grapevine I hear she’d heard “gimme my damn data” elsewhere, and didn’t know it was me.

    Anyway, Meryl: thanks for posting this for discussion. I agree, I know people who absolutely don’t want to know those details; scared, emotional reaction.

    So the next point to consider is, do we therefore not ALLOW access by those who want it? I think your last says you’d want access. So I don’t get what the beef is… maybe my wording seemed to diss the whole idea of patient worries?

    p.s. Thanks for all the work you do on anthraxvaccine.org.

  23. Transparency is the key issue but we need to have a good look at the Patient Safety communities/IHI/WHO who have faced extreme challenges. But they have overcome a lot. The Patient Safety communities include patients’ views and incorporate them as key participants.’Trust me’ when I say that these happen to be the worst of the worst scenarios, although I hate to categorize. While I did not agree with the overarching philosophy in the ‘Apology’ aspect there are lessons learned here for e-patients as well.

  24. Douglas Dill says:

    You’re absolutely right that patients deserve to get their data. A group of 30 healthcare facilities in Montana is now testing eMix, which will make it much easier for patients to get access to their radiology images AND reports. Read about that at http://tinyurl.com/yfdz38q and http://www.emix.com/media_11-17-2009.html.

    eMix will also become available next year to patients as well as other U.S. healthcare provider facilities that adopt this cloud-computing service. So far as we know, this is a unique development. More at http://www.emix.com.

  25. Hi Doug – thanks for posting a note about this, as I requested, since I didn’t have time to go explore it. Folks, all comments are welcome.

    Of course this will only be useful when the provider subscribes to your service. What’s the pricing like?

    If I may be so bold, I’d encourage you to set pricing very low or free for a limited time while you develop compelling metrics (customer satisfaction for both patients and providers) and gather a few equally compelling stories of good things that happened because patients saw their images or reports.

    As this post and thread reflects. there’s tremendous cultural concern about patient access to the information, and in my experience the best way to overcome that is to show, with as much evidence as possible, that the benefits massively outweight the concerns.

  26. gr8 post by @ePatientDave RT @ShebaMuturi: Docs deny pts access to health record due 2 misguided protective paternalism http://bit.ly/5xHORo

  27. “simple” doesn’t mean that it’s reduced in it’s power, it was meant to be “accessible” and “Actionable” – providing someone a scan of nurse notes or a list of medical terms isn’t actionable for the patient. My desire is to make the data not only accessible (they can get it, and share with another provider or system) but also actionable (so the the patient can do something with it, including basic education and behavior modification.

  28. Dave Walker says:

    What part of “Give us our damn data” do you not understand? – http://ow.ly/NQib via @ePatientDave #health #healthcare

  29. Sam Adams says:

    RT @drwalker_rph: What part of “Give us our damn data” do you not understand? – http://ow.ly/NQib via @ePatientDave #health #healthcare

  30. Dave Walker says:

    What part of “Give us our damn data” do you not understand? – http://ow.ly/NQiC via @ePatientDave #health #healthcare

  31. kauaianken says:

    Didja notice Rajiv Mehta’s argument for adding a loop where practitioners get a look at the data on what we do in response to the data we get?

  32. Great find, Ken! Perfect fit. Everyone, please click through and check that Quantified Self post. (I responded in comments.) http://www.kk.org/quantifiedself/2009/12/a-billion-little-experiments.php

  33. […] Rajiv Mehta, Zume Life, December 2009 Thanks to e-Patient Dave SHARETHIS.addEntry({ title: "A Billion Little Experiments", url: […]

  34. Dave Walker says:

    What part of “Give us our damn data” do you not understand? – http://ow.ly/NQib via @ePatientDAve #health #healthcare

  35. JanisKPC says:

    I hope and pray that these types of open forums lead to positive changes for easy access to patient records. I don’t know anyone who does not have a scary story about the lack of information flow or lack of communication about patient history. When I was diagnosed with cancer nearly ten years ago, when I requested copies of various reports/records, I was treated like I was trying to steal something.

  36. Depending on which country you live, there are legal precedents on this very issue. It’s a ‘fall back’ option when requesting and being denied your medical information. Many hospitals have a patient records department but you need to jump through hoops there as well.
    I have found that my hcp’s just now give me copies each visit. It’s easier than making an issue out of it (for them).
    Always excellent posts within this group, with thanks Dave and All.

  37. ePatientDave says:

    @staticnrg Oy, wrong post – it was on the @ReginaHolliday post http://is.gd/5Mjpp I'll go fix the original tweet.

  38. ePatientDave says:

    "I was treated like I was trying to steal something" – latest pt comment about getting medical records http://is.gd/5Mjpp

  39. RT @ePatientDave: "I was treated like I was trying to steal something" – latest pt comment about getting medical records http://is.gd/5Mjpp

  40. Robin says:

    RT @ePatientDave: "I was treated like I was trying to steal something" – latest pt comment about getting medical records http://is.gd/5Mjpp

  41. Jessica says:

    I think the issues of easy access to patient records by the patient is something that absolutely should be addressed. There is much talk of the controversy over whether emotional reaction will worsen the patient’s condition, but what isn’t being considered is the emotional unease the patient suffers being in limbo about their health, not knowing what is going on aside from what the doctor shares with them. I also like to be able to look back at information to see if anything has improved or declined – for instance, lab work for a simple cholesterol test, etc.

    I also would like to point out that, most likely, the patients who choose to use the technology to view their medical records are the patients that are on the web searching for their own answers. Another point is that once the patient receives the news (whether good or bad) they have that information to look to as a confirmation of what the doctor had told them. I’ve gone home several times from the doctor’s office with no clue what was said after an unfavorable outcome. If I had known what was wrong beforehand, I would come to my appointment more prepared for solutions or treatment recommendations. Rather than reeling from the news of what’s wrong and missing the solution and/or treatment options.

    If you are a patient with a care-giver (or are a care-giver yourself) then it also makes it easier to share information with that person if they are unable to make it to your appointments, if you so choose.

    • Jessica says:

      I forgot to address one issue: accessibility. It’s MY health, MY body, MY choice – shouldn’t I have access to information regarding it? As someone said above – I have also requested copies of my records from my general practioner only to be asked why I needed it, and “because I want it to take to another doctor” was met with “We’ll fax them the information when they request it.” The problem with that is the new doctor doesn’t request previous records, only goes on what he diagnoses and observes. Wouldn’t it be nice to have the record to back up what you tell your doctor about symptoms that you have a history of, as opposed to him treating it as a new issue, possibly repeating treatment that you’ve already tried and been non-responsive to?

  42. […] data’. An e-patients all-star team is quoted in the story: Jen McCabe, Regina Holliday, e-Patient Dave, Alan Viars. Susannah Fox is an Associate Director of the Pew Internet & American Life Project […]

  43. CFS Facts says:

    All patients should review their medical records on a regular basis. My records from one “respected” institution have an error on almost every page — alleged prior diagnoses that in actuality were never given because I don’t have that condition; claims that no doctor ever diagnosed what I said I have; on a day when I was given a prescription for bronchitis my lungs were listed as “clear” (and the prescription wasn’t noted, either)…

    These errors have caused me innumerable problems over the years, but they have refused to correct them. If I’d found them sooner, I might have been able to get the false information removed.


  44. Get ready for the patient data debate: "Give us our damn data" http://bit.ly/5xHORo

  45. Ginger says:

    11 years ago I moved to a different state on a different coast, before I left I requested my medical records for myself and my children, I was told I would have to pay for them. I then asked how much I would have to pay for all the records and was told it would be about 300.00 dollars,(roughly 10cents per page) which I didn’t have. They said when I got to the state I was moving to that I could have the new doctor request them, so that’s what I did.

    When the new doctor requested them, what did he get?? ONE PAGE! Which didn’t even tell him anything of my history. It did not inform him of any of the surgeries I’d had or that I’d had kidney failure within 2 years prior to our move. Nor did it give him a list of any medications I’d been on. Needless to say the “data” received was the same for my children 1 page only, with no real medical information.

    We should have the right to access our medical records at any time, without having to pay for them or fight for them and have them include all the data we need!

  46. Sam Adams says:

    You’re going to be waiting a long longer than you want to get your damn data.

    I’ve been conflicted about writing something for weeks now, I’m typing up a post I’ll add in here.

    Succinctly, the issue is that HIT is so incredibly broken and that HealthCare management is so incredibly myopic and focused, that with rare exception, you’re not going to get your data anytime soon.

    This, from the trenches. Take it for what it’s worth.

  47. […] do know, though, that no stakeholder is more motivated. And as cancer widow and 73 cents artist Regina Holliday made abundantly clear in December, you might be surprised what a motivated “just a high […]

  48. […] a post entitled “What part of ‘Give us our damn data’ do you not understand?” , e-patients.net shared patient experiences of struggling to obtain their medical records.  The […]

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