Society for Participatory Medicine
e-patients.net blog
medical records
e-patient stories, medical records
Rookie e-patient @Xeni helps the docs view her data
Update 6:33pm ET: the Storify feed wasn’t working. Should be fixed now. What a rocket ride it’s been for Xeni. Tuesday morning we reported on the BoingBoing co-editor’s unexpected breast cancer diagnosis 12/9, and her odyssey reading her scan data. (CDs didn’t come with software; in a few hours with Twitter help she’d downloaded OsiriX [...]
Read Moree-patient stories, e-pts resources, medical records, news & gossip
Gimme My Damn Data: cancer patient Xeni finds a “ghost penis” in her bone scan
This post contains street language about body parts, harvested from Twitter last night with Xeni’s permission. This is a story of a non-medical person getting it in gear when she finds herself in need, and what happens when she does. A famous blogger/journalist is discovering healthcare the hard way. At a time when she says [...]
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Important papers released on patients and their medical records
Important update: I just learned that the full text of these articles is open access! Thanks to the Annals for giving patients access to the text – since it is, after all, about patients see the information. OpenNotes article: “Inviting Patients to Read Their Doctors’ Notes: Patients and Doctors Look Ahead” (Walker et al) – text, [...]
Read Moregeneral, medical records, trends & principles
Nancy Finn: Personalized medicine and participatory medicine intersect
There’s no stopping an idea whose time has come. SPM member Nancy Finn (@NFinn8421), in the process of her own odyssey as a health care thinker, had an epiphany that strongly echoes the principles of the growing P4 Medicine movement (“predictive, personalized, preventive, and participatory”). The days of “one size fits all” medicine appear to [...]
Read Morefound on the net, medical records
Interactive timeline of EHR history
Katie Matlack at SoftwareAdvice.com has posted an interactive timeline of EHR history. Interesting to see how things unfolded long ago. Note, too, two long-ago pivotal moments: The late 1960s introduction of Larry Weed, MD’s Problem-Oriented Medical Record, “…aiming to generate a record that would allow a third party to independently verify the diagnosis. Prior to this, [...]
Read Moremedical records, policy issues, pt/doc co-care, reforming hc, shared decision making, Why PM
Alert: Lawrence Weed, father of the Problem Oriented Medical Record, looks ahead
The excellent ICMCC daily newsletter just alerted me to this item from Permanente Journal: Interview with Lawrence Weed, MD – The Father of the Problem-Oriented Medical Record Looks Ahead. I hope to absorb it in the next day or two, and I invite people who know this history to do the same. It’s deep, and it’s connected [...]
Read Moremedical records, positive patterns, research issues, trends & principles
EHR data spurs real-time evidence-based medicine (NEJM / Health IT Exchange)
Wow. Todd Park, Chief Technical Officer at HHS, ought to be jumping out of his skin with joy at this one. This time, House, M.D. fans, it was lupus. The article “Evidence-Based Medicine in the EMR Era” published in the Nov. 10 issue of the New England Journal of Medicine might have read like a House television script, but it was a real-life glimpse of [...]
Read Moree-pts resources, general, medical records, others' e-patient stories
Kenneth S. Spriggs: The Benefits Of Visualizing Your Medical Data
Guest blogger Ken Spriggs talks about how he made sense of his medical data by creating a graphic electronic health record, the DIYEHR. [Update 11/25: the data visualization that Ken created is so extraordinary that we're adding it here, four days after the original post. LOOK how he helped his physicians "get" his medical history! [...]
Read Moremedical records, policy issues, reforming hc
Society for Participatory Medicine Files Comments in Support of Proposed CLIA and HIPAA Regs Making Lab Results Available to Patients
As you may recall, in September the federales issued proposed regulations that would make all lab results subject to the basic rule that all patient records should be provided to the patient upon request. See the post on e-patients.net explaining the proposed rule on access to lab results and its background. Following discussion in the comments to the blog [...]
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A glimpse of OpenNotes findings: “Patients are overwhelmingly interested”
“Patients are overwhelmingly interested in gaining rapid access to their notes … doctors have not experienced significant disruptions to their work.” Hear hear! That’s from a new commentary published Monday in Modern Healthcare about the OpenNotes project, in which patients have full access to their doctor’s visit notes. We’ve written about it numerous times, dating back to our [...]
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