e-Patients Blog
Our blog highlights items of interest to those in the world of e-patients and participatory medicine. Some of our most popular topics include e-patient stories, e-patient resources, problems in healthcare, medical records, news & gossip, patient networks, policy issues, positive patterns, patient/doctor co-care, patients as teachers, reforming healthcare, trends & principles, and why participatory medicine. Our newest blog posts are below. You can also subscribe to our blog via email.
#S4PM2019 conference livestream: how to use Facebook Live
Hello, SPM members! - And honored guests, perhaps soon to be members. Join here. :-) Over the past few weeks, I have received quite a few inquiries about livestreaming opportunities for our conference in Boston, Tuesday, October 15. If you can't attend in-person, our...
Patient-Generated Health Data: Taking the Lottery Out of Love
(This post originally appeared Oct. 2, 2019 on EngagingPatients.org) The dating site Match.com wants to help singles “find the kind of relationship they’re looking for” by providing “the tools they need to help take the lottery out of love.” The Centers for Medicare...
Call to action! Second annual Doc Tom award nominations now being accepted!
Our Society’s 2nd Annual “Doc Tom” Awards are now open for nominations! Spread the word, and join us at our annual conference on October 15 for the announcement of our award recipients! Doc Tom Ferguson was the founder of the e-patient movement. To promote his values,...
A Family’s Guide to the ICU, Part 4: The Human Aspect of Care
This is Part 4 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 | Part 2 | Part 3 ] [Download the Complete Family's Guide as a PDF] As you...
A Family’s Guide to the ICU, Part 3: Being An Advocate
This is Part 3 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 | Part 2 ] [Download the Complete Family's Guide as a PDF] If you are in the...
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...