Society for Participatory Medicine
e-patients.net blog
e-patient stories
e-patient stories
How to be Participatory in the Face of Adversity
From the lens of a patient who recently experienced major surgery, I now realize how difficult it is to be participatory when you are in pain and taking large doses of pain medication which dulls the senses and puts you in a place where you are not really thinking about anything but how to get [...]
Read Moree-patient stories, e-pts resources, key people, patient networks, social media
How Things Change
SPM member Jody Schoger’s post “Cancer: Part Two” at her blog Women with Cancer landed with a big thud on April 26. Schoger was recently diagnosed with metastatic breast cancer. She’s a co-founder of #bcsm (breast cancer social media), one of the highest rated Tweetchats with almost 6,000 tweets per month. In less than two years the group has gained [...]
Read Moree-patient stories, pt/doc co-care, pts as teachers, shared decision making
Clinicians are from Mars, e-Patients are from Venus
Are clinicians from Mars and e-Patients from Venus? My experience is e-patients and clinicians can agree that they seek best health. Yet there is such a disconnect, such frustration, so much of the time. Participatory medicine strives to bridge the gaps between patients, caregivers, clinicians and health care systems. Caring about best health and getting [...]
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Reading our own EKG
There’s been a great thread on Dr. Wes’ blog and the SPM listserv about patients obtaining and reading their own EKG’s. As you can imagine — lots of pros and cons. A significant difference noted between the right to have the information (“tracing”) and the ability to interpret the tracing and use it to guide health management. [...]
Read Moree-patient stories, found on the net, news & gossip, positive patterns, reforming hc, research issues, trends & principles
Health Affairs Patient Engagement Edition – with videos and commentary
The Health Affairs February 2013 issue is titled “New Era of Patient Engagement” and the content matches the title. Nick Dawson describes the day in his blog post Health Affairs is the new shirtless dancing guy Here’s a short extract from the blog post. It’s worth reading, it has other interesting tidbits. The briefing was [...]
Read Moree-patient stories, hc's problem list
Cristin Lind: My new litmus test for patient-centeredness
Guest blogger Cristin Lind is an e-caregiver and e-patient; her personal blog is called Durga’s Toolbox. When trying to find a definition for what real patient- or family-centered care looks like, I can easily to get caught up in inspirational jargon. But a recent visit for my biannual mammogram (fun!) helped me give a very [...]
Read Moree-patient stories, pt/doc co-care, Why PM
The Case for Being On Top of Your Case
Guest post by Elaine Waples, one of our new (today) members of SPM (with her husband Brian Klepper). This story illustrates one of the core dysfunctions in American medicine today – lack of coordination – and makes a compelling case for patients and families to be engaged in every case, to the full extent of their [...]
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Our latest “doctor as e-patient”: SPM member Leana Wen
It’s less common today but people used to think empowered patients were anti-doctor. One part of our response on this blog was to point out the many clinicians who are e-patients themselves, as in Let’s hear it for the d-patient e-patients (with dozens of comments). This guest post by SPM member Leana Wen, MD (Twitter: @DrLeanaWen) is another, about [...]
Read Moree-patient stories, general, research issues, understanding statistics
“Arm” ourselves with information: Health News Review and 2009′s “war on cancer” post
Some things are what they call “evergreen” – persistent value, never out of date. Two come together for this year-end post. __________ A lot’s changed since our society was formed in 2009, but year after year a core skill for participatory medicine is ability to think for ourselves (including providers) equipped with good information (which is distinctly [...]
Read Moree-patient stories, e-pts resources, hc's problem list, key people, policy issues
Top 5 Posts of 2012
I was curious to see which were the top 5 posts, traffic-wise, and figured readers might be interested, too. Here’s the line-up: #1: Open knowledge saves lives. Oppose H.R. 3699! by Gilles Frydman The e-patients.net post with the highest number of views is a clear call to action in favor of open access to research. [...]
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