e-Patient Dave

February 9, 2015 By e-Patient Dave Leave a Comment

Daily Digest: Is interop the Holy Grail?, science resisters, four more

Dave comment: I’m learning that Digest curator Casey has a taste for longer pieces than most internet articles. Take a peek at links that interest you. Here’s today’s selection.

The “holy grail” of frictionless data sharing: HITConsultant weighs in with an op-ed related to GMDD delivered, if you will. “Is Universal Health Data Platforms the “Holy Grail” of Interoperability?” (As we said last week, GMDD = Gimme My DaM Data, the cry of e-patients who want to have all their medical information. As the song says, “It’s all about me so it’s mine.”)

How to talk to science resisters: Here’s something from The Grist that tackles a tough issue: how to shift the thinking of parents who don’t want to vaccinate their kids. The Grist has been reporting on climate and environmental science since 1999, so they’re very familiar with the challenge of engaging with a “don’t confuse me with the facts” crowd: “How to talk to an anti-vaxxer”

In Let Patients Help I said “Information alone doesn’t change behavior,” which is very much on topic here. What can you say that will make any difference?

Caveat “precision”: “Precision medicine” is a hot topic, given President Obama’s announcement from the White House Jan. 20. (SPM president Nick Dawson was there – see his post on e-patients.net) on Jan. 30. Former SPM president Michael Millenson has been writing about healthcare for decades, and offers up a fact-based caution against letting genomic testing companies brand themselves as offering “precision medicine” without the science to support that claim. “Breast Cancer Tests Betray ‘Precision Medicine’ Branding”

Will healthcare spending drop or soar? Dr. Peter Ubel, MD and behavioral scientist, asks a question on Forbes that’s been rising in the cost-of-care circles where both Dave and I engage: is healthcare spending slowing, or “Is Healthcare Spending About To Accelerate?”

Questioning Medical Protocol: Randi Oster is an aerospace engineer, and the mom of a son with a chronic illness. In a post on the Engaging Patients blog, she shares a story that illustrates how the steep learning curves every e-patient navigates work best in tandem with an open mind and a sense of humor. “Questioning Protocol, a Family’s Perspective”

Funny Monday: I (Casey) am a longtime TV geek. Not just watching it, producing it. So I can weigh in with a professional POV, TV-wise and e-patient-wise, with a must-watch recommendation: HBO’s “Getting On,” set in a southern California extended-care facility. LA Weekly agrees with me. “HBO’s ‘Getting On’ Has What It Takes to Be a Truly Important Show”

February 9, 2015 By e-Patient Dave 3 Comments

Spare a Rose: inspiring Valentine campaign for kids who need insulin

Click to donate

I don’t often ask for donations here, but I’ve recently been getting more educated about the world of diabetes, and this campaign especially inspires me. So please click to donate, as I’m doing today.

Kerri website photo You may recall that in December, my SuperPatient event at Brown University featured Kerri Morrone Sparling, the local diabetes blogger known on social media as @SixUntilMe. I love everything about her approach, from her self-image (“Diabetes doesn’t define me, but it helps explain me”) to her wonderfully expressive writing to her advocacy for others.

This is one example. It’s Valentine season, and Partnering for Diabetes Change coalition is running a “Spare A Rose” campaign. The idea is that on Valentine’s Day (or any day), you buy one less rose, and give the money instead to help kids with diabetes who can’t afford either the tests strips to monitor their condition, or the insulin they need.

I was disturbed, and got educated, when I read last weekend what it’s like when someone like Kerri has their blood sugar get so elevated. Feed your head with her posts: [Read more…]

February 6, 2015 By e-Patient Dave Leave a Comment

Daily Digest: Truck-stop family medicine (LOVE this!) and 5 more

TGIF, friends! Here’s our Friday Festival of Fun for e-patients and health policy wonks far and near.

Keeping family medicine alive – at a truck stop: Rob Marsh MD of Raphine, Virginia, was named Country Doctor of the Year in 2014. Where does he practice? At a truck stop. What was his gig before country-doctor? The US Army’s Delta Force. “Virginia doctor tries truck-stop medicine to keep family practice alive”

#GMDD (“Gimme my DaM data”), Irish edition: It seems that patients everywhere are struggling to figure out the data-access issue. Our friends in Ireland are having the same conversation that we’re having here in the US. From the Irish Times: “Medical Matters: Charting progress: who owns patients’ medical notes?”

Kindness training in medical school: A core driver of transforming medicine, and the healthcare delivery system, is medical school. The Wing of Zock blog, published by the Association of American Medical Colleges, is a great source for insights on transformation in academic medicine. Kindness training in medical school? Why … YES. “Kindness Beyond Curriculum”

Patient Portal ideas: One of the blogs that’s chock full of discussion about all things health IT is HITECHAnswers – here’s a short post with some ideas for patient portal. Which in our experience have yet to be delivered in truly meaningful ways, to patients or clinical teams. “Searching for Creative Patient Portal Solutions”

Change at the FDA: FDA Commissioner Dr. Margaret Hamburg is moving on. She’s faced many challenges well – compounding pharmacy safety, Ebola. Here’s hoping her successor will also bring a special focus on tech, because tech is the biggest enabler patients have had since the internet itself. NYTimes: “FDA Commissioner Dr Margaret Hamburg to Step Down”

Doctor By Day, Comedian By Night: For your Friday funny-bone, here’s a doctor who’s become a movie star. Usually, it’s an actor playing a doctor who becomes a movie star. Ken Jeong started as an internist with an off-hours comedy habit. You might know him from his breakout performance in “The Hangover.” Here’s his “my big break” story from NPR: “Doctor By Day, Comedian By Night“

February 5, 2015 By e-Patient Dave 4 Comments

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…]

February 5, 2015 By e-Patient Dave 2 Comments

Daily Digest: Thursday, February 5, 2015

Hello, Thursday – here’s your dose of ePatient vitamin-D-for-Digest!

Social workers are superb participatory medicine practitioners. They get it. Here’s a post from The Social Work Helper with a nifty little virtuous-cycle quadrant image that outlines how, and why, the e-patient movement matters. “The E-Patient Movement”

Our friends over at The Incidental Economist noticed an item in the White House’s proposed budget related to the agricultural use of antibiotics. With the rise of antibiotic resistant bacteria, why are we still pumping antibiotics into cattle, pigs, and chickens to “promote their growth”? Modern farming practices promote growth just fine. The science of ag antibiotics, and why it should stop: “Agricultural antibiotics in the President’s budget request”

Cui bono (Latin, to whose benefit) in healthcare reform? Sarah Kliff has an interesting answer after studying insurance stock earnings reports. Health plans have far outstripped the S&P 500 for the last five years. “Health insurer stocks have crushed market averages since Obamacare passed”

Stephen Wilkins is a health policy thinker whose home on the web is something he calls the Mind the Gap Academy. He posted something on LinkedIn that is a pretty tight list of the Top 10 things a clinician can do to foster patient engagement. No tech required. “The Ten Commandments Of Patient Engagement”

The American College of Physicians (ACP) – the 2nd largest physician organization in the US, after the American Medical Association (AMA) – has jumped in to the pharma price fight with both feet. They announced this week that they were signing on to the Campaign for Sustainable RX Pricing. Here’s a piece from CNBC with the details: “Doctors group joins fight against ‘skyrocketing’ drug prices”

We love the internet. We wouldn’t be here talking to you if we didn’t. However, the Wild Wild Web can be a challenging place for advocates of all stripes. When I (Casey) came across a post on the Guardian’s site recently, it prompted me to put up a post about trolls on one of my own blogs. Here you go, weigh in with your thoughts. “Advocacy, trolls, and threats – oh my!”

Last but not least, our humor break for today, in which Dr. Grumpy ponders Zen and the art of cough drops. “Cough Drops“

February 4, 2015 By e-Patient Dave Leave a Comment

Coming to Switzerland. Add an event?

Special invitation to Swiss readers! This is an opportunity to book an event this June at a greatly reduced price compared to my usual rates. Because it’s Switzerland. :)

Early in 2011 two extraordinary invitations arrived. The first was to speak at TEDx Maastricht, hosted by my now-good-friend Lucien Engelen at RUMC. It was an amazing TEDx, mostly about patients, with most speakers being what I now call “actual sick people.” Lucien gets it, and the experience was mind-blowing (and changed my life).

The other was from a couple with a consulting business called IKF, in Lucerne, Switzerland. They completely see the e-patient future, and every spring since then they’ve invited my wife Ginny and me to come back. We don’t make much money on it, because they got me when this was all brand new, and c’mon, it’s Switzerland, and the scenery is just unbelievable… I teach a half day session in the e-health course they teach at the university, and they organize a few speeches in the area at greatly reduced prices, for any sponsor. That covers the costs with a little left over.

Because they were sponsors way back in the beginning, in my price policy they qualify for the “BFF” discount, which we extend to everyone who books something as part of this annual trip. They were also the ones who told me I had to write Let Patients Help … so they could translate it into German for use in a textbook! So I wrote it and they translated it. (I’m not kidding – this is the kind of change-oriented visionary I love to do business with. Wouldn’t you??)

(They also had Lucien write a section – no coincidence there!)

This year’s trip is June 7-13. If you’d like to sponsor an event – a speech, a private consultation, whatever – please contact andrea.belliger at ikf.ch who is coordinating.