e-Patients Blog
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A Family’s Guide to the ICU, Part 2: Understanding the Why and the How of the ICU
This is Part 2 of a four part series, introduced Monday, based on my family's experience with our mother's unexpected and dramatic ICU stay and bilateral lung transplant. [Go to Part 1]. [Download the Complete Family's Guide as a PDF] After the first few days in the...
A Family’s Guide to the ICU, Part 1: Your Strategy for Navigating the Unexpected
Even the air in the waiting room of a hospital feels uncertain. When you first arrive you hesitate at each word, not knowing what is appropriate, who to ask for help, and how or if to break the ice with the others waiting to hear the fate of their loved ones. Each step into the critical care setting creates more questions — entering the ICU, sitting in your loved one’s room, watching as machines are hooked up to her, eavesdropping on discussion about her prognosis and care plan. It feels like you are walking in a foreign land without a guide.
A Family’s Guide to the ICU: Series Introduction
That’s my mom in the photo above.
Last year our family was caught by surprise when she had a completely unexpected and dramatic ICU stay of three months. We had a lot to learn fast and too little help, and when it was over we committed to help other families be engaged, informed, empowered patients.
#HCLDR chat on the 100th anniversary of women’s suffrage: 8:30 ET Tuesday
On June 4, 1919, Congress passed the 19th Amendment, giving women equal voting rights. (It was ratified by ¾ of the states, just in time for the 1920 elections.) Activists for patient power (and partnership) have often pointed to parallels of our movement with women...
Fast-Paced Compelling Topics at Atlantic Pulse: The Atlantic Summit on Health Care, Boston
On Tuesday, April 30, a roomful of health care insiders enjoyed a series of rapid-fire, TED-esque talks, interviews, and panels by leading health care voices at The Atlantic Summit on Health Care (#AtlanticPulse). Several SPM members attended the forum, and we...
Manage your health data, or trust blindly? Setting the stage for a data disaster, part 2
What if you hired a financial manager to handle your money - a trusted professional, like that guy above - then discovered they didn't know what they were doing, and your records were a mess? How would you feel? That's pretty much what happened to me ten years ago...
It’s the 10th anniversary of trying to get our health data: “I’m putting my data in Google and HealthVault”
It's a big anniversary, this spring - this week, even. Ten years ago the whole issue of personal health data exploded into the headlines. It was about something I wrote here, not having a clue it was any kind of a big thing, but it ended up on the front page of...
A million views in 44 days! ClearHealthCosts price transparency TED Talk goes viral
SPM member Jeanne Pinder has spent years crusading for price transparency with her startup ClearHealthCosts. She's formed partnerships with WHYY in Philadelphia, been on CBS News, won awards for investigative journalism with NOLA.com and Fox 8's "Cracking the Code"...
The process of shared decision-making: What it is, when it’s not, and what it should be
This is a guest post by SPM member, heart patient and author Elizabeth Rankin, BScN. Some background: one of the most-discussed topics on our blog is shared decision-making (SDM), with pages and pages of posts (75 in the category), dating back to 2010's Salzburg...
Got Candles? Happy 30th Birthday to the World Wide Web!
“Vague but exciting…,” was the response Sir Tim Berners-Lee received when he submitted a proposal for an information management system (aka the world wide web) to his supervisor in March of 1989. Three decades later, we have hit a key milestone, and approximately half...
SPM member Jeanne Pinder on TED home page
The famous TED Talks site TED.com is the holy grail of many evangelists. Aside from the extraordinary visibility it gives your message, and aside from the validation of your message (the site's tagline is "Ideas worth spreading"), it means you've gotten good at it....
Sara Riggare is Swede of the Year in medicine
Sara RIggare, one of the earliest members of our Society, has just received a great honor: Fokus magazine ("Sweden's Time") has named her "Swede of the Year" in medicine. In the photo from the award ceremony she seems appropriately thrilled.:-) A Parkinson's patient,...
