e-Patient Dave

February 12, 2015 By e-Patient Dave Leave a Comment

Daily Digest: People-powered care + 5 more Thursday treats

ICYMI (That’s “in case you missed it”, for the less-hip reader – Dave): Yesterday was a big day in patient liberation. The BMJ (formerly known as the British Medical Journal) devoted an entire edition to people-powered medical care. Here’s Dave’s complete list of the 21 articles(!): “Big BMJ supplement on Patient Centred Care”

Doximity data on doc income: Transparency is spreading across all parts of healthcare, including MD salaries for various specialties across the US, courtesy of Doximity, which calls itself “LinkedIn for Doctors.” The Atlantic has the 411: “What Doctors Make”

Paying for the unaffordable: When you get hit with a healthcare sideswipe, like cancer or a stroke, the costs of care can ramp up pretty quick. If you’re uninsured, or under-insured, paying for care can be a steep hill to climb. Many people in that situation are taking to crowdfunding their medical care, according to this NY Times piece. “Managing Health Costs With Crowdfunding” (But be sure what you’re donating to is legit – there’s a lot of controversy around “Hannah’s Fund” fraud imitators on GoFundMe. – Dave)

Precision Medicine, Take 1: Moving from “one size fits all” medicine to what I (Casey) call “snowflake medicine” will require some serious DNA assay assembly. This piece from MIT Technology Review talks about Take 1 on that idea. “U.S. to Develop DNA Study of One Million People”

From the “This Should Be Obvious” desk: In a 2007 study published in the journal Health Services Research, the question of patient activation as a motivating factor in self-management of chronic conditions was raised. Their research concluded “maybe” … but we’d love to see a follow-up in the current age of quantified-self tracking. “Do Increases in Patient Activation Result in Improved Self-Management Behaviors?”

Mission Possible: On his “Musings of a Distractible Mind blog,” one of our favorite family doctors, Rob Lamberts, talks about his mission to transform medical practice, with his own practice as ground zero. He doesn’t take insurance, his is a direct-care practice. Think more “country doctor” than “Royal Pains.” Here’s his take on the team he’s working with to drive change at ground level. “The Mission”

February 11, 2015 By e-Patient Dave Leave a Comment

New BMJ article: “From patient centred to people powered: autonomy on the rise”

I’m thrilled to say that the BMJ, formerly the British Medical Journal, has just released a new article I wrote about the “social movement” aspect of our work, including the rationale for listening to the patient perspective.

Intended for medical audiences around the world, it’s part of a big, 21-article multimedia “Spotlight” supplement that will be in Thursday’s print edition; it was all released online yesterday. Over on the e-patient blog I posted the full list of articles, including the names of other members of our Society for Participatory Medicine who are in this issue. Big participation, big visibility!

This supplement, appearing in one of the world’s top medical journals, may well be the biggest moment yet in the history of our movement. It’s got hours of reading and listening, with contributions from eight countries, if I counted correctly.

Those of you in my generation – the era of many social movements – will relate to the parallels with what’s happening today: a whole class of people whose voice has been considered “not worthy” is speaking up, demonstrating capability, and pushing back when we’re told to “stay in our place.” :-)

Is it time for a new scientific field?

[Read more…]

February 11, 2015 By e-Patient Dave 1 Comment

Daily Digest: Life is 100% fatal, medical error stats, and more

“Life is 100% fatal“: I’m quoting myself there, and I’ve helped beloved family members navigate that final journey by holding their hand, and standing watch, as the light of their living selves flickered out. It’s a sacred human experience that’s become over-medicalized, particularly in the US. From the NY Times, written by a palliative care doctor, Ira Byock: “Dying Shouldn’t Be So Brutal”

Killer numbers: In a terrific post on Vox, Sarah Kliff, who’s built a solid reputation as a journalist who can break down complex statistical data into accessible information, tells us that we have miles to go before we’ve defeated the medical-error monster. “Medical errors in America kill more people than AIDS or drug overdoses. Here’s why.”

Doctors as family advocates: Dr. Pauline Chen makes a forceful case on the NY Times Well blog that doctors should advocate for their patients and families to get work policies in place, policies that let people get the time needed to care for sick family members. “Doctors as Advocates for Family Leave”

Why discharge instructions matter: On Forbes.com, a piece by Robert Szczerba on why care transitions, particularly from hospital to home, can present re-admission risk, and efforts to eliminate that risk. “Coming Home From The Hospital Is Actually More Dangerous Than You Might Expect”

Bad science, and how to spot it: Another post from Vox, this one by Susannah Locke, on how to spot weird (bad/fake) science reporting. Piece includes a great infographic, too. “15 ways to tell if that science news story is hogwash”

Dr. House of Cards: Wednesday humor comes from ZDoggMD – slightly funnier than placebo – and his mashup of House of Cards, Dr. Oz, and medical-science mayhem. “Dr. House of Cards: Oz vs. Underwood“

February 10, 2015 By e-Patient Dave Leave a Comment

Daily Digest: Speak up, stay safe + 6 Tuesday info-treats

Speak up, stay safe: How much do we love the fact that Consumer Reports is getting involved in the patient safety movement? We love it LOTS. One of the e-patients on the CU team, Kathy Day, is quoted in this piece that advises being proactive and persistent when you’re in the hospital. “The surprising way to stay safe in the hospital”

Physician, test thyself? Here’s a piece from the NY Times Well blog that asks if MDs are getting their own DNA tested. The author is an MD and bioethicist who breaks down the topic really well. “Doctor, Have You Had Your DNA Tested?”

Life is risk, act accordingly: Shared decision making, risk, and medicine. Dr. John Mandrola talks about doctors as “choice architects.” “The medical decision as a gamble”

Culture clash [WARNING: graphic topic]: The NY Times talks about a cultural norm in many countries, female genital mutilation, and how that’s showing up in western medical offices. “Effects of Ancient Custom Present New Challenge to U.S. Doctors”

Medicine as kindness: Einstein College of Medicine in New York CIty has a heartwarming story on their blog about Project Kindness. “For Patients, What Makes a Great Doctor?”

$500K+ for an EHR system, and they’re still faxing like it’s 1999: Both Dave and I are fierce advocates for frictionless data access for patients *and* clinical teams. We – all of us – still have a long way to go, sadly. “Doctors Find Barriers to Sharing Digital Medical Records”

Eat at your own risk: Dr. Brad Nieder, tagged as the Healthcare Humorist, with our Tuesday nugget of funny – since both Dave and I travel on the speaking circuit ourselves, we know from road food and regional diners and dives. “Americana in Los Angeles & Atlanta“

February 10, 2015 By e-Patient Dave Leave a Comment

I’m on Medicare! Here’s how I made it easy.

Here’s the punch line: Get a good insurance agent. Mine is Wendy Reed Johnson [right]. She didn’t cost me a thing, and saved me a ton of angst.
________

For years in my cost-cutting edition series I’ve been blogging about my experiences as a highly activated shopper for medical services, most recently six months ago when I announced:

Six month countdown to Medicare!
What do I need to know?

Well, it’s six months later, I’m turning 65 this month, so on the first of the month I went on Medicare. (In some situations you can wait, but I opted not to, so I had decisions to make.) Considering how much I blogged in that series about insurance shopping in the past, including the difficulty of figuring out the right plan for my needs, you can imagine that I was anticipating more misery. But Wendy asked the needed questions, laid out all my options, and in short, made it easy.

I highly recommend that before you approach 65 you hunt for a Wendy. Find someone who’s a delight to work with – for you, because people are different – and who, when you ask questions, is happy to hear them and can answer in a way you understand.

IMPORTANT: Medicare is not one big system that you just sign up for. It still has many many options and flavors. Plus, you have to pick one plan to cover doctors, another to cover hospitals, and another for prescription drugs. Frankly, I refuse to get into explaining here the perverted and needlessly complicated terminology (Part A, Part D, blah blah blah). I prefer to pay my agent to understand it. (Except I don’t have to pay her.) [Read more…]

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”