Keynote: "Gimme My Damn Data!"



E-patient Dave Debronkart* E-patient Dave Debronkart*, Society for Participatory Medicine, Nashua, NH, United States

Track: Business
Presentation Topic: Consumer empowerment, patient-physician relationship, and sociotechnical issues
Presentation Type: Oral presentation
Submission Type: Single Presentation

Building: MaRS Centre, 101 College Street, Toronto, Canada
Room: Auditorium
Date: 2009-09-17 09:30 AM – 10:30 AM
Last modified: 2009-08-13
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Abstract


One of the most fundamental rights is the right to be fully engaged in one's well-being, especially in moments of crisis when a life is at stake. My experience with moving my data from my hospital's PHR to Google Health gives us all good reason to be deeply concerned about how well the healthcare industry manages data quality. (And I mean YOUR data not "patients'" in the abstract. This is personal.)

I want to be able to audit my medical records, annotate them, export them easily for sharing with other providers, and any other innovation we can dream up that will help fulfill the promise of Participatory Medicine, in which doctors and patients engage in a thriving collaboration, each supporting the other.

This talk will cover real-world examples of how inability to do this has cause harm and how ability to do it has improved outcomes.

I'm serious about this. "Patient" is not a third-person word. We're talking about policy issues that will affect you, your parents, your spouse, you children. Let's work together. Patients can help.

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