Illness in the Age of ‘e’: A case study in participatory medicine

Last month, the Connected Health Symposium at Harvard Medical School saw a first: a full-length case study in participatory medicine, described concurrently by both the patient and his physician. The physician was our own Danny Sands MD, and the patient was our e-Patient Dave. It was “a remarkable story,” as Matthew Holt said on The Health Care Blog:

… a great session in which e-Patient Dave (Dave deBronkart) and his physician, Danny Sands described his use of listservs, the Internet, email and BIMDC’s PatientSite and other tools in his (successful!) battle with renal cancer—after being told median survival was 24 weeks. I won’t tell the whole story as they’re trying to get it published in an authoritative journal—so that physicians will pay attention and promote this use of technology by patients.

The presentation was videotaped, and we present it here.

The audio is sharp and clear, but unfortunately the exposure was way off, so the original video was very dark. We’ve lightened it, so it’s somewhat better; we hope you’ll bear with us.

The talk was 55 minutes long. There are six clips, because YouTube’s limit is 10 minutes per clip. At bottom are the slides, to augment the video.

Part 1: Reconnecting and Agenda Setting

Part 2: Discovery and Diagnosis

Part 3: How We Used e-Tools

Part 4: Outcome and Insights

Part 5: Audience Discussion

Part 6: The e-Patient Perspective

Here are the slides, with some annotations. At bottom right, click the slide-screen icon to enlarge to full screen; click it again to restore view.

Illness in the Age of \'e\'

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3 Responses to “Illness in the Age of ‘e’: A case study in participatory medicine”

  1. Susannah Fox says:

    Thank you so much for editing the video for posterity, Dave! I was in the audience that day and am so glad that we can share the experience with other people.

    The segment I’m going to pick out as my favorite (first among equals) is Part 5: Audience Discussion. The first comment is inaudible, but I remember it was an audience member who simply said she wanted to recognize Dave for his bravery and applaud the presentation.

    The next comment is from Lena Sorenson, who asked about how the collaboration described by Danny and Dave can be replicated. How can the information flow not just between providers, but to the patient too?

    The third question is from Jamie Heywood of PatientsLikeMe, who points out that the value generated in this situation comes from the patient and his social network. The medical system is congratulating itself for stepping back, not stepping in, to save Dave’s life. The internet allowed Dave to extract information ahead of the medical system and it’s in fact an indictment of that system. Dave and Danny’s answer spills into Part 6. It’s all worth a listen.

  2. SusannahFox says:

    #socialhealth e-patient Dave’s use of PatientSite and ACOR

  3. SusannahFox says:

    @ePatientDave We also recommend watching the Dave & Danny show on video: A case study in participatory medicine

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