Testimony submitted to the Meaningful Use workgroup (and an urgent call for citizen participation)

There’s an important call to action below. If you care about making healthcare more responsive to us, and less responsive to vendors, please read to the end. This is short.

Thanks to all of you who submitted comments on this week’s post, offering feedback. Here is the PDF I submitted today, which is being distributed to all members of the Meaningful Use workgroup.

Full text of original comments received here by the deadline were included in Appendix A, along with a link to that post so interested readers can see subsequent discussion and any later comments. Keep ’em coming!

Want to know how cool this community is? We had several times more responses on this subject than were received by the similar post on The Healthcare Blog – and none of theirs had actual feedback! (Just the usual THCB kvetching.:–))

More importantly, consider how vital this work is. To quote from Matthew Holt’s post over there:

It goes without saying, but I’m going to say it again anyway, that Josh [Seidman]’s shepherding of the meaningful use criteria plus his earlier lobbying of the process from the outside HHS was very instrumental in making the consumer such a big part of phase 1 of the meaningful use criteria. However, you can be assured that there are lots of people wanting to put the brakes on any expansion of the consumer-facing meaningful use criteria.

You hear that? People wanting to stop our involvement?  If we want healthcare to become more patient-centric we must stop them, whoever they are!

Yet only two people added feedback on the government’s blog. That’s bad news!

So thank you for participating here. I’m proud that when the government finally starts asking, we here are speaking up. That’s the Society for Participatory Medicine.

In light of that, if you want to add more hollering, speak up and I’ll take your words with me.

When was the last time the government explicitly asked you while the rules were being made? Some of us are hardened and just get cynical afterward. Now’s your chance.

Thank you for participating.


Posted in: e-pts resources | medical records | policy issues | pt/doc co-care | reforming hc | Why PM




13 Responses to “Testimony submitted to the Meaningful Use workgroup (and an urgent call for citizen participation)”

  1. Dave,

    I strongly believe that we should speak with a unified voice at this very early juncture. You are our conduit to ONC and our voice.

    Having one person represent us avoids the cacophony that can easily complicate our message to the point it becomes irrelevant.

    Thank you!

  2. I am at the National Leadership Conference for the Leukemia and Lymphoma Society, so I can not make a more substantive comment right now.

    Suffice it to say, your leadership to put the patient at the center is invaluable. However, I would argue similar to my post at Health 2.0 in Europe that the “data utility layer” does not start with the EHR (http://www.cloudinc.org/cloud-health/health-2-0-europe-a-personal-health-record-phr-by-another-name/).

    The EHR in many ways is a presentation layer and not a starting point, thus the API can not flow from the EHR must be in a data utility layer, similar to Matthew Holt’s comment in Paris. Of course, as the above post at CLOUD’s website makes clear, this data utility layer must exist across domains, and it must be built around people and not webpages.

    As an example, the Securities and Exchange Commission moved away from the document-centric model in financial reporting several years ago, when it mandated XBRL for public company reporting. The idea of a data-driven model, rather than a document model for healthcare is explored here: http://www.cloudinc.org/cloud-health/xbrl-in-the-world-of-healthcare/.

    More thoughts on this vital meaningful use topic over the weekend at http://www.cloudinc.org.

    Thanks ePatient Dave for driving the conversation.

  3. Susannah Fox says:


    I’ve been thinking about why the government-sponsored blog got so few comments and hoping (really, really hoping) that nothing is read into that lack of citizen engagement.

    The few comments on the gov blog are excellent – almost intimidatingly so – and I had the momentary freeze that I sometimes feel in the midst of a Serious Landscape (all the marble in DC contributes to this). That’s too bad, since I know that Josh Seidman and his colleagues want to hear the nitty-gritty details.

    If I could give them some advice, I would tell them to emulate the for-profit sector a bit when it comes to on-the-ground reporting. I recently heard a Procter & Gamble executive describe their research process as “listening more than asking.” They are going to where people already are (social media) and not conducting as many (or any) focus groups. They are listening to the naturally-occurring conversations about their products and responding when it seems like the right thing to do, to provide information or to explain why they are doing what they do.

    Patients are already talking, sharing, (bitching even) and participating. Just look at Alan Pitts’s post on this blog – he’d probably never think to post it as a comment on the gov blog, but the gov folks should know his story and the hundreds – thousands – more that exist out there.

  4. Annie Stith says:

    I am a simple person, so I’m not up on all the “techno-meddical” speak that as I sometimes read here. I will respond to what I understand.

    Should patients inform themselves, using the Internet as a tool? I do. Part of the reason I began to look for medical information on the web was because I wasn’t receiving it from the doctors I was seeing.

    I had Fibromyalgia when it was just a “syndrome,” and there wasn’t much consensus among doctors about if it was even real. My PCP didn’t believe in it, calling it a “garbage can diagnosis.” He first referred me to a neurologist, who could find nothing wrong. I only heard about Fibromyalgia when I went to a second rheumatologist, the first declining to make a diagnosis at all. Even with the diagnosis, the second rheumatologist sent me away with a tri-fold brochure that explained very little. It was only by using search engines on the web that I was able to begin to understand and find resources such as books and the Arthritis Foundation.

    Now I’ve been diagnosed with “Fibromyalgia/Chronic Myofascial Pain Complex,” which I’m still working at understanding. I keep up on the ongoing research on Fibromyalgia thru the Internet, learning about clinical trials and potential new treatments, alternative or traditional, which I take to a much better PCP. He appreciates the info because it’s simply not possible for him to keep up with all the research on all the conditions his patient might have. Simply looking up a medication recently that. His Nurse Pract prescribed helped me catch an error that could have been fatal.

    Would I like to see electronic records? Certainly. Someone with as complicated a history as mine, and the number of medications I’m on, has a need for electronic records, rather than a handwritten piece of paper in my wallet I hope I’m conscious enough to tell the paramedics or doctors about.

    I hope this information is useful.

    Annie Stith

  5. Testimony I submitted, incl. your comments, and an urgent call for citizen participation: http://is.gd/bw45A

  6. #MeaningfulUse testimony I submitted, incl. your comments, & an urgent call for citizen comment: http://is.gd/bw45A

  7. […] Article e-Patient Dave, e-patients.net, 16 April 2010 SHARETHIS.addEntry({ title: "Testimony submitted to the Meaningful Use workgroup (and an urgent call for citizen participation)", url: "http://articles.icmcc.org/2010/04/17/testimony-submitted-to-the-meaningful-use-workgroup-and-an-urgent-call-for-citizen-participation/" }); […]

  8. SusannahFox says:

    "Let patients help. We *want* to help. Harness our energy" – @ePatientDave http://is.gd/bw45A #meaningfuluse #WhyPM

  9. Susannah Fox says:

    I could only attend the first panel in person, but I listened to most of the second panel from my desk.

    As usual, the patient voices were among the strongest. Regina Holliday’s story never ceases to move people and to rally support for what seems to be basic health data access, but in reality has been very difficult to obtain. What was new to me was her call for better visualization of data. As she said, “We live in a visual world but a text medical system.”

    Neil Calman of the Institute for Family Health insists that doctors’ notes can and should be viewed by patients. When med students question this, he challenges them to come up with an example of a note that a patient shouldn’t see “and they haven’t stumped me yet.” Example: “patient isn’t compliant” – well, ask them why they aren’t taking their meds – b/c they can’t afford it – then put that in the record: “patient cannot afford the prescription.” Example: “patient is schizophrenic” – well, when that patient shows up at the ER and is asked for their information, they should know their clinical diagnosis.

    Paul Tang, a committee member, pointed out that all the speakers were talking about a “mind shift: How do clinicians earn a spot on the patient’s care team? It’s the opposite of ‘How can I provide care to this patient?'”

    Chris Gibbons of Johns Hopkins cited Pew Internet data (ahem, w/o crediting it) to show that patients are ready for more access to health data. As he put it, patients are getting something online that they are not getting from the health care system. Here’s the report I think he had been reading: http://bit.ly/dhIrC Anonymity and convenience are what he thinks people find online.

    Eric Dishman of Intel called for an “interoperable govt” instead of the “Washington run-around.” He said that he comes to DC to present their research and “agency after agency listens to their presentations and says ‘sounds good, can’t do it’ then privately ask if they can get their mom into an Intel pilot.”

    Scott Mackie of Ideo said that “access will create demand – let business in so they can innovate.” (This was in answer to a question about whether consumers are ready and/or interested in having access to their health data.)

  10. I just found your blog! Really love this idea. I hope it really becomes mainstream.

    As I have said on my blog, everything starts with me. I make the appointments. I do the research. Why am I not allowed to be a partner in my care? Why can’t I see test results online? Why is the power differential between patient and physician preserved?


  11. Susannah Fox says:

    I thought I’d add some links to other blogs covering the hearing:

    A good start to make HIT use meaningful to patients!
    By Patricia Flatley Brennan, Director, Project HealthDesign

    Oh No You Don’t – The day consumers rejected norms around Health Information Technology
    By Ted Eytan, MD

    The official meeting page, including the massive handout (2 inches thick printed out):

    Consumer Engagement & Meaningful Use
    By Cindy Throop, MSW

    If there are others, please add them in another comment!

  12. Susannah Fox says:

    One more:

    Meaningful Use and Healthcare Disparities
    By Chris Gibbons, Associate Director, Johns Hopkins Urban Health Institute

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