Safety Net Populations

I recently spoke at a workshop entitled Patient Online Access in the Safety Net. (Check out these related posts.)

Click image to view full size original.
Marked-up internet access thermometer v4

The organizers, Ted Eytan and Veenu Aulakh, asked me to create a participatory presentation, which definitely pushed me out of my comfort zone since I had to be ready to discuss any and every aspect of the Pew Internet Project‘s data.

First, we put a poster-size version of our internet access thermometers on each table. Second, we provided multi-colored markers for the participants to annotate the thermometer, circling the populations they serve and writing in the groups not listed such as migrant workers, homeless people, or people living with chronic disease. Some people added notes about what percentage of their client base is, for example, Spanish-dominant or living in lower-income households.


I walked around the tables, listening and asking questions so that my remarks could relate directly to their feedback. The group’s comments highlighted both the limitations of the Project’s data (we can’t capture everyone if we rely on cell and landline surveys) as well as the excellence of the data (what we do know, we know well, like the fact that teens are almost universally online no matter what their household income level).

Here are two more tables’ marked-up thermometers.
Marked-up internet access thermometer v6 Marked-up internet access thermometer v1


I learned from James Kahn, MD, that many of his patients use cell phones, but can only afford temporary contracts and therefore do not have a stable number where they can receive calls or text messages from his clinic. Another participant was newly encouraged about patient online access after realizing that she could talk to her teenage clients about getting their parents online.

It would have been much easier for me to stand up and deliver a “stump speech” about internet access, covering the data points that I thought would be useful to the group. But by asking the audience what they most wanted to know, I followed in the footsteps of Diana Forsythe and other people who ask her central question, “Whose assumptions and whose point of view are inscribed in the design of this tool?” By putting aside my assumptions, I hope we created a more relevant, interesting, and useful conversation instead of a lecture. And I gained new respect for medical professionals who are willing to let patients participate in, and even drive, clinical conversations. It’s harder to listen than to talk sometimes.

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Comments

12 Responses to “Safety Net Populations”

  1. Wow. (I know I’m saying that a lot lately. That’s good.)

    I’m so heartened by the shift in perspective to ask the audience (any audience) what THEY want to hear about. I’ve done a lot of public speaking and heard many people teach about how to *anticipate* “what they’ll want,” when it’s so sensible to just ask.

    I love the idea of distributing a draft of a model so people can mark it up. How immensely valuable in both directions.

    =====

    Danny Sands, I hope you’ll review the quick and useful slides at Dr. Ted’s site http://www.tedeytan.com/tag/safety-net that Susannah mentioned. How closely does the prescription refill workflow shown there match what we’ve had for years on PatientSite? (Looks pretty similar to me.) What’s new in the slides, other than the fact that most providers don’t have it yet?

  2. I’m with Dave – wow. I know from teaching how difficult (and rewarding) that kind of discussion model can be. I’m so impressed by the direction you’re taking your work.

  3. Danny Sands says:

    I wanted to respond to Dave’s post about prescription renewal request workflow that was outlined in Adam Szerencsy, MD and Neil Calman, MD’s slides.

    PatientSite (the portal that Dave uses) is similar to MyChart and allows a similar work process to facilitate the process of prescription refills and renewals. But in either case, we don’t have a perfect solutions yet.

    Outside of an integrated delivery system, like the VA or Kaiser, we are never sure we have a complete picture of your medications. It is true that physicians in accredited healthcare organizations are supposed to “reconcile” patient medication lists to ensure that they include prescriptions from all sources including over-the-counter medications, but this is an arduous process and yet another unreimbursed task.

    In the typically dis-integrated healthcare delivery system in which most of us get our care and practice, an individual provider’s practice is not meaningfully linked to other systems outside their own organization. This leads to silos of information and patients needing to remember who prescribed the medication so they can ask for a new prescription.

    In an ideal system (some would call it a future state, but I’m not feeling optimistic right now), informatio would flow seamlessly among systems and be available when and where it is needed. Although community interoperability projects may solve this, the business challenges are enormous and the technical interoperability (ensuring that information is not only transmitted but is also understood by the computer systems) isn’t a piece of cake, either.

    Putting patients at the center of control, a la Microsoft HealthVault, Google Health, and Indivo may help get around the business issues. But without solving the technical issues of semantic interoperability it will be of little help.

    For prescription refills/renewals, arguably the most efficient thing to do from a patient’s standpoint today would be to use the pharmacy’s website, if they have one, and are able to contact the prescribing physician (whoever that might be). The pharmacy actually has the financial incentive to do this, since they get paid for filling prescriptions.

    Although this communication from pharmacy to physician is currently done via phone or fax, in the not too distant future, pharmacies will be able to electronically request prescriptions directly from the physician. The electronic request would be understood by physicians’ electronic medical records and be incorporated into their workflow.

    As Dave pointed out, most physicians (90% of those in small practices) are not using electronic systems capable of this type of transaction. And not all pharmacies are, either (although it has had more adoption there, thanks to the efforts of SureSript).

    Sorry my comment is long–see what happens when you get me to write, Dave?

  4. Long schmong – you haven’t been paying attention to my posts. :)

    > without solving the technical issues
    > of semantic interoperability

    Despite my previous skepticism and caution about trusting Google with anything, I’m increasingly thinking that something like Google Health or Dossia is *central* to the whole concept of patient as platform and point of integration. And I see that as central to the whole idea of patient-centered medicine.

    I understand the issues of interoperability; when I led a standards group in digital printing, we faced it, though with a thousand times fewer things to “semanticize.”

    Here’s a radical thought, but one which is increasingly attractive to me: disrupt. Screw the old system. Let’s just start building a new one, with new semantics that don’t have to be compatible with anything. Let the old systems just get old.

    I mean, screw it! Costs much less to build a simpler new system and expand it however we feel like it.

    Reject the values of the old system in favor of something more convenient and less restricted; eventually erode from below. That’s disruption.

  5. Re a complete picture of your medications: before I “got it” about e, I was really ticked off when the hospital would send me a form before every appointment asking me to list all my medications. “Don’t you KNOW??” I thought. “YOU prescribed them! They’re in your system!”

    But now, having learned more about how fragile every system is (especially involving unmonitored human behavior), and having watched Beth Israel Deaconess go through wave after wave of doing everything they can imagine to prevent errors, I get it: only that (having ME tell THEM) is the most accurate way of knowing the situation.

    And guess what: that makes me the “patient as platform,” the point of integration.

    So what we’re creating here on this blog, as we work toward the patient-centered future, is the same thing in spades: I walk in not just with a form listing my meds, but as the platform, with *all* my data.

    What the hell: given that I can’t count on “the system” to transfer data reliably (medical errors are six times more likely at handoff*), it makes good sense to ME to say “Never mind, thanks, I’ll handle that.” (Yes, I know good work is going on to improve that. But the fundamental issue is still there.)

    Seriously. No thanks, I’ll handle that.

    *Petersen LA, Brennan TA, O’Neil AC, Cook EF, Lee TH. Does housestaff discontinuity of care increase the risk for preventable adverse events? Ann Intern Med. 1994 Dec 1;121(11):866-72.

  6. Susannah Fox says:

    Just to bring in the safety-net populations again, I wanted to highlight that one of the participants in that Oakland session was from the St. Joseph Health System in Sonoma County, a participant in MiVIA an online personal health record system that serves migrant farm workers, clearly a mobile population that needs that “patient as platform” approach. If you click on the third photo above, you’ll see the annotations for “SJHS” (St. Joseph Health System).

    Here is a tour of MiVIA.

  7. Danny Sands says:

    I like your spirit, Dave. Our challenge is that when we think about disruptive innovation in healthcare we’re not considering a thorough stakeholder analysis. Who will gain and who will lose from this change, and how will the losers (the entrenched interests) make it difficult for us to change? Even Don Berwick, who has been a strong advocate for radical change, has trouble articulating a plan about how to do it in our current environment. Blowing it up and starting over may make sense for a small venture or a new piece of hardware, but this is a $2 trillion industry you’re talking about, and we can’t take it “offline” while we redesign the system. We need to keep taking care of patients and paying claims all the while.

    I do agree that patients are keys, but they really aren’t paying the bills in our healthcare system. he most inovative and patient-centric organizations are places for elective surgery (plastic surgery, vision corection, etc.). But as patients assume an increasing role in paying for healthcare services they will be viewed more as the customers, and then they will have more of a voice.

  8. […] the “low-tech majority” but I wished that I had had time to dive deep into the degrees of access data we have on safety-net populations since there are nuances. Shirky’s advice is to grab a […]

  9. SusannahFox says:

    @ePatientDave Soon! Generations builds on e-patients.net posts re “thermometers” (http://is.gd/e49B) and social media (http://is.gd/eTO5)

  10. SusannahFox says:

    Cell phone as lifeline for homeless http://bit.ly/kF9tN (via @lrainie) reminds me of Safety Net Populations discussion http://is.gd/e49B

  11. RT @SusannahFox Cell phone as lifeline for homeless http://bit.ly/kF9tN – see Safety Net Populations discussion – http://is.gd/e49B

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