e-Patient Dave

Power to the Patient!

Search Results for: communities

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e-Patient request – time sensitive: reactions to Taxol, Abraxane, Carboplatin

This uterine cancer e-patient had a very bad reaction to a new chemo regimen yesterday and has lost confidence, and wants to learn more before proceeding. What advice do you have on these treatments? Are there good online e-patient communities?

The emails I received:

I went to the Infusion Room and a young RN starting infusing me with preparatory drugs such as Benadryl and steroids before the Taxol and later Carboplatin.

The moment the Taxol starting flowing into my system I had a series of “Oh no!” reactions that indicated a severe hypersensitivity to the drug. A crowd of nurses came on the scene.

[Read more…]

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Speaking Nov. 10 at Sacramento Health 2.0 … join us!

Health2SacBEveryone in the “health 2.0” world knows that the Health 2.0 conference is the conference in the health 2.0 world. It’s where everybody has to be, if they want to be known in that high-powered innovator world. Proof got even deeper when, a couple of years ago, they shifted venue from downtown San Francisco to the belly of the beast: Silicon Valley.

Less well known is that Health 2.0 has a number of outlying communities, and one is in Sacramento, the state capital.  Next month I’ll be speaking there, at a free event open to the public.

Laura GoodIt’s 6:30 to 8:30 p.m. at Hacker Lab, 1715 I Street. Register here! And here’s the Health 2.0 Sacramento site. Tentative agenda:

6:30 – 7:15 Mingling and Munchies
7:15 Kickoff
7:30-8:15 e-Patient Dave (including time for Q&A)
8:15-8:30 Mingling

A special thanks to one of my earliest Twitter buddies, @GoodLaura – Laura Good – who, it happens, is a startup geek in that very area and involved with Health 2.0. My first private twitter messages with Laura were in 2009! (If you must know, it was about some typesetting arcana that were raising puzzles in Microsoft Word.) How sweet it is to cross paths IRL with long-time online peeps!

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Berci’s “My Health: Upgraded”: A futurist vision worthy of Doc Tom

Berci holding "My Health: Upgraded"

The headline above is an extraordinary statement, but after 450 speeches and policy meetings, I’ve heard a lot of discussions about healthcare (especially its future), a lot of predictions, and a lot of attempts to explain the past, and the new book My Health: Upgraded (Amazon) stands out as the best explanation of the future that I’ve seen.

I myself never met “Doc Tom” Ferguson, the founder of the e-patient movement, but I’ve looked back at the vision he published and how it’s come true – and I’ve thought about why, a lot. This new book by 30 year old Bertalan “Berci” Meskó MD, PhD is in the same league. (Disclaimer: having never met Tom, I’m talking about the vision as he expressed it in his writings, which is all I have to go on.)

Happily, the BMJ (formerly British Medical Journal) liked the following review well enough that they published it on the BMJ blog. Below is that text, slightly modified.

“My Health: Upgraded”
is a clear vision from
a young futurist

In my work to understand how medicine saved me from Stage IV renal cell carcinoma in 2007, yet so often falls catastrophically short, I’ve looked for causes of both success and shortfall. More than anything, I’ve seen that “the progress of progress” depends on whether we correctly see, or fail to see, the latest and most important new patterns that alter what’s possible and what direction we should head in.
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e-Patient request: resolve PTSD from early medical trauma?

Brenda kayaking for the first time
Brenda kayaking for the first time
Brenda Denzler with grandson
Brenda hamming it up with her grandson

Next in a series of very informal e-patient request blog posts, which feed the equally informal patient communities page. If you haven’t browsed the series you might find it interesting to see the kind of information people exchange for some conditions … and for others, we got nothing. Welcome to the internet!

This request is from e-patient Brenda Denzler, shown here in (characteristically) two comic settings. She’s seeking help for an issue that’s been with her for her whole life. 

The doctor she mentions is Ryan Madanick @RyanMadanickMD, whom I’ve met on the conference circuit (particularly at Mayo social media) and online!

She sent this email. (In a comment I brought up EMDR as a trauma treatment, but I don’t know a lot, and besides, I’d like to hear more about other child medical traumas.)

My gastroenterologist was impressed with my preparation as a patient of his and referred me to your site.  I’m not sure what it means to be your “current or potential client” – but am taking a chance by contacting you this way, anyway. [I don’t take “clients.”]

In late 1958 and early 1959, I had two medical situations arise.  I was 5 years old.  [Read more…]

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Advisory client Antidote raises $13.5M for clinical trials searches

Screen capture of TechCrunch screen capture
Click to view the TechCrunch piece

In September 2016 TrialReach rebranded itself Antidote, to shift focus away from the “solution” (the clinical trial), focusing instead on the patient’s need: “I have a problem, and I need an antidote.”

My advisory client TrialReach is on the big hot TechCrunch site today, for their success in raising another $13.5 million (here). I don’t do much advisory work, but to this one I said yes, because it’s a big push forward in making vital information more accessible to the ultimate stakeholder – the patient – and it’s done in way that blends three things I’m passionate about: good business sense, modern technology, and patient-centered design.

(I don’t have stock in the company – not even a tiny amount; my policy is that I sell advisory services, but I don’t want to be in a position of literally having a stake in how well their stock does. And, as anyone who knows me knows, nobody could pay me enough to say or do something I don’t believe in. So I’m talking about this company because I believe it deserves attention, not as part of any quid pro quo.)

What TrialReach is

[Read more…]

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Daily Digest: Monday, February 2, 2015

 

Welcome to a new feature: the Daily Digest, by my friend and fellow SPM member “Mighty Casey” Quinlan, of Richmond, VA. Her Facebook feed and Twitter feed are so constantly full of things I’d missed that I thought “Shoot, let’s post that!” So this month, Monday through Friday, she’ll post links to what she thinks are the best/hottest/most interesting healthcare, medicine, and bio-science stories that day. Here she goes:

Yeah, there might even be some humor, since we’re both fans of Gomerblog and ZDoggMD.

Today’s crop:

  1. The human brain is a fascinating instrument. This piece from the NY Times’ Well blog looks at the impact price awareness has on the placebo effect. The outcome is both surprising, and not surprising at all. “Expensive Drugs Work Better Than Cheap Ones“
  2. Are minute clinics, where patients can walk in for quick care on stuff like strep throat or flu shots, better patient experiences than care at a regular primary care practice? Geriatrician Dr. Leslie Kernisan had the opportunity to compare two of her own experiences, which she shared on The Health Care Blog: “A Tale of Two Sore Throats: On Retail Clinics and Urgent Care“
  3. How far would you go for medical care? Would you go all the way to Thailand? Morgan Spurlock, the guy behind “Supersize Me,” now has a CNN series called “Inside Man,” where he looked at the rise of medical tourism in the face of rising U.S. healthcare costs. “Surf, sand … and surgery? Inside the world of medical tourism“
  4. Our friends at Symplur, the healthcare data visualization gurus, asked and answered a great question on their blog recently about patient communities and New Year’s goals. Christopher Snider posted this, and it’s a great read. “Looking Forward to Looking Back – How Do Patient Communities Approach New Year’s Goals?“
  5. Connected health and quantified-self have gotten a lot of ink, both physical and virtual, over the last few years. With the rise of self-tracking tools, from Fitbit to AliveCor to Scanadu, patients with chronic conditions and early-adopter tech mavens are monitoring their physical status with more and more granularity. Can connected health penetrate the “actual medical practice” membrane? Here’s a list from The Doctor Weighs In blog: “Five Accelerants to the Adoption of Connected Health“
  6. Because we mentioned humor, and Gomerblog, and ZDoggMD in our intro, here’s a three-fer: a post about Turntable Health, ZDoggMD’s new comprehensive care clinic in Las Vegas, on Gomerblog. It’s not a new post, it dates from May of 2014, but it is definitely worth a read for the laughs. NOTE: this post is SATIRE. “Big Pharma and Mega Hospitals ‘Scared Beyond Belief’ of Tiny Las Vegas Health Clinic“

That’s it for today – check back tomorrow, we’ll have a fresh list of must-reads for you!