Society for Participatory Medicine
e-patients.net blog
e-pts resources
e-pts resources, general, PM Tech
Katie Matlack: iOS medical peripherals: convenient and connected
This guest post from Katie Matlack (reposted from the free site Software Advice) launches a new section of e-Patients.net: “PM Tech.” This special branch of e-patient resources is gaining importance as smartphones and tablets become ever more mainstream. Devices that were once just toys for techies are now the favorite tools of many ex-technophobes — [...]
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OpenNotes helps me prep for a visit
My annual physical is this Friday. Since my doctor and I were among the guinea pigs participants in the OpenNotes project, I just got this reminder email: Message Date/Time: 1/17/2012 10:00:06 AM Read Date/Time: 1/18/2012 7:19:08 AM From: OpenNotes, Study To: deBronkart, Richard Davies Cc: Subject: Reminder: Review your doctor’s notes before your next visit! Dear Patient, You have a [...]
Read Moree-pts resources, found on the net, reforming hc
Pauline Chen: Getting Patients to Take Charge of Their Health
Quick note as I run to the airport – Last May we reported on a study in process at Emory University about whether a “safety-net” (poor) population would engage with a personal health record. The preliminary results in that poster showed that what predicted patient performance was not how poor they were, nor how bad [...]
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GeekDoctor’s wife, newly diagnosed, gives Cancer 101′s Cancer Planner high marks
I just learned that the organization of SPM president-elect Sarah Krug, Cancer 101, has gotten what I consider a major acknowledgement. On his blog GeekDoctor.blogspot.com, John Halamka announced last month that his wife Kathy was newly diagnosed with breast cancer. Yesterday his weekly Cool Technology of the Week post was about Cancer 101′s “Cancer Planner” tool: Hundreds [...]
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Fred Trotter: “e-Patients: The Hackers of the Healthcare World”
SPM member Fred Trotter is a member of the open source / innovator community that knows “hacker” as a noble word – people who disregard how something was intended to be used (by its designers) and rearrange the parts to suit their needs. Today on the O’Reilly Radar blog he post a truly great introduction [...]
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Facebook as a source of healthcare value?? Item 2
As we work to re-engineer both the culture and the structure of healthcare, one question that constantly faces e-patients with uncommon or difficult conditions is: Where do I turn, to find genuine value? The traditional answer is “ask your doctor,” and clearly that often works. But what about when it doesn’t – or when you [...]
Read Moree-pts resources, patient networks, positive patterns
ACOR kidney cancer community wins 25th anniversary “Maily” Listserv award
It’s fitting that our last post of the year should be about a patient community … winning an award! ACOR’s “KIDNEY-ONC” kidney cancer patient community was recently honored with the “Maily” Listserv Choice award in this, the 25th anniversary year of Listserv® technology. In announcing the award, the vendor’s site (Lsoft.com) described the KIDNEY-ONC list [...]
Read Moree-pts resources, positive patterns, pt/doc co-care
Two great posts on how patients can be responsible for their care
In the Society for Participatory Medicine we talk about patients shifting “from being mere passengers to responsible drivers of their health.” Two posts Tuesday from SPM members provide some great specifics. First, orthopedist @HJLuks published Your Role in Avoiding Medical Errors, 101. A few highlights – see the whole post: “Look at your medical record. [...]
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 [...]
Read Moree-pts resources, general, Why I joined
Kathy Kastner: Why I joined is not why I’ve stayed
Guest blogger Kathy Kastner shares her experience as an SPM member. Her website, Ability4Life, offers resources for participatory family caregivers. When I first heard the words “Participatory Medicine” I felt fully in synch, even without delving into its practical day-to-day application(s). I heard e-Patient Dave and Danny Sands speak and I was energized by the [...]
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