“Give us our data”:
my talk at the NeHC board meeting

Last Tuesday, June 2, I was on a consumer panel at a board meeting of the National eHealth Collaborative. This is a heady group to be addressing; as this press release says,  nine of these people are on the advisory committees that are working directly with David Blumenthal, Obama’s National Coordinator for Health IT, to set policy and standards.

My deepest, sincerest thanks to Steve Findlay of Consumers Union, who invited e-patients.net to be on this panel. What a radical idea: have a consumer on a consumer panel! It’s so good to see the skies opening in this way.

The topic was whether “consumer pull” would encourage healthcare providers to adopt electronic medical record systems (EMRs). (Like, if you and I keep asking our doctors and hospitals to let us see our data online, will they be more likely to get off their butts and GET our data online??)

All I can say is, if I have anything to do with it, consumers (that’s you) will be clamoring to see their medical records, both to check their accuracy and for the reason I sent my data to Google Health in the first place: to get involved in their care, to be responsible, to participate.

Go thou into the wilderness and clamor for access!

Here are the slides I used, with a few more added to make it a self-running presentation. Some of the text is small, so take it to full screen:

e-Patient Dave’s presentation to NeHC board June 2 2009

View more presentations or Upload your own.

The panel was videotaped. Here’s my talk. The sequence of slides (for instance the opening “takeaways”) is a little different from the above slides, but the flow is essentially the same.

For reference, here’s the full unedited video of the hour-long testimony including the other speakers. My portion starts at 34:09.
Full video of consumer panel at NeHC board, June 2, 2009

The other panelists were phenomenal; I learned a ton from their expert observations. Some of it was over my head until I listened a couple of times; they have years of experience in these policy discussions.  All I know is, I want us to have access to our own damn data. :–)

By the way, a big thank-you to SlideBoom.com, the free service that converted my slides for posting here, including my animations and slide transitions, which cause fits for most such services. Good tool!


Posted in: medical records | policy issues | pt/doc co-care | reforming hc | trends & principles




14 Responses to ““Give us our data”:
my talk at the NeHC board meeting”

  1. ePatientDave says:

    New on e-patients.net: “Give us our data”: my talk at the NeHC board mtg http://is.gd/R5Pf (w/ slides & video)

  2. ePatientDave says:

    1. Saturday on e-patients.net: “Give us our data” – my talk at NeHC Tuesday http://is.gd/R5Pf <==*Now with embedded video*

  3. ePatientDave says:

    1. Saturday on e-patients.net: “Give us our data” – my talk at NeHC Tuesday http://is.gd/R5Pf <==*Now with embedded video*

  4. Andy Stones says:

    The Emr system is in its initial stages to be connected nation wide in the US. Well i must say very informative video and agree with the view of Dr.Tom Fergusion about system to be followed in health care sector.

  5. Judy Feder says:

    Dave — this is an awesome set of slides. Thanks, from one e-patient to another!

    My latest bad data story is ALMOST comical, and introduces another dynamic into the witches brew — technical glitches and clerical staff without the training/authority to help.

    I had a PET/CT on Saturday and, as is my practice, waited afterward to pick up CDs of the study. It’s very important that I have them because, while my onc can, at long last, look at the images online, I’m going to Mt. Sinai for a consult tomorrow, which has no connection to my local PACS system.

    When I opened the disc at home, low and behold, it was incomplete. This has happened to me before (truly, I’ve seen it all). It was frustrating enough not to be able to see the images that might give me a clue as to how my current TX is working — even more frustrating that I didn’t have a good set of data to bring to my consult.

    When I called the Radiology desk to let them know about the error and find out if I could get correct copies, they let me know that they’d been having a problem with the system. Would’ve been nice to hear that before going on a goose chase!

    It’s not 72 hours later, and the system is still broken. My consult is tomorrow and I may not have the images that, quite frankly, are life and death to me.

    I wish the kind but out of their league clerical staff had told me of a potential problem, or at least checked the discs before they gave them to me. Even more to the point, I wish someone could figure out how to make the data pipes at my hospital talk to the data pipes at Mt. Sinai so I have a chance of getting the answers I so critically need.


  6. Oliver says:


    When a hcp of any sort refuses to hand over copies of a report on the spot, I now say, “That’s ridiculous. These legally belong to me and you should be able to send them electronically by now.” They don’t send them electronically, but it removes any barrier to my getting a preliminary reading, which saves time and anxiety.

    I also notice that the news media has run some “Question your doctor, he is not God” pieces lately, which encourages patients to question procedures and ask for accountability. Amazing that in the old days the medical business was able both to maximize profits and preserve the Doctor as God culture.

    So things are not yet where e-patients would like to see them, but there is a sea change in the culture, meaning mainstream media is accepting some of the premises of the movement.

  7. […] » “Give us our data”: my talk at the NeHC board meeting | e-Patients.net […]

  8. Lori says:

    Keep up the good work, dave, because there are a lot of people who want the same thing: access to their records. AND, there are even more who don’t know it yet. What’s the old saying? You don’t know what you don’t know? When it comes to EHRs, that could not be more true right now!

  9. […] Article e-Patient Dave, e-Patients.net, 6 June 2009 SHARETHIS.addEntry({ title: ““Give us our data”: my talk at the NeHC board meeting”, url: “http://articles.icmcc.org/2009/06/08/%e2%80%9cgive-us-our-data%e2%80%9d-my-talk-at-the-nehc-board-meeting/” }); […]

  10. Jonena Relth says:

    RT @myEMRchoice "Give us our data" http://bit.ly/M1e6X

  11. ePatientDave says:

    That’s where I have my “give us our data” talk http://bit.ly/WXmoz. Very good people, on THE committees.

  12. Sam Adams says:

    @epatientdave @ the #NeHC: “Give us our data”: http://is.gd/1qzCR – #win #healthcare #hit #ehr #emr #phr #hcreform

  13. Amazing that in the old days the medical business was able both to maximize profits and preserve the Doctor as God culture.

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