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e-patients

Apr 29 2015

Why I got a QR code tattooed on my sternum

By e-patients, EHR, health records, healthcare industry, medical records

I’ve been heard here on the topic of getting a barcode tattooed on my neck to avoid having to fill out another one of those damned forms-on-a-clipboard at a medical provider’s office. I’ve also been heard all over the interwebz (mostly Twitter) on the excrescence that is poly-portalitis syndrome (PPS), caused by the plethora of portals presented by providers under current EHR adoption drive. In late 2013, I had a V-8 forehead slap moment, realizing that a QR code – I have created several of those, including the one (different than the tattoo!) on my business card – would be a great way to accomplish my objective. QR code reader smartphone apps are in relatively common use, and I also figured that a tattoo would be a conversation starter in the rooms where I work to shift the medical-industrial complex’s thinking on patient engagement and participatory medicine. Even though it took me over six months to find a tattoo artist willing to do this – and I live in the 3rd most tattooed city in America, according to a Today Show story in 2010 –  and then another couple months to gather the shekels to pay for it, almost a year ago, on June 18, 2014, I presented myself at Graffiti’s Ink Gallery for my inkapalooza. This was not my first tattoo rodeo. I had done what I thought was required due-diligence in researching the size and pixel resolution on the QR code itself, and had had a couple of meetings with the artist to make sure we were on the same ink dot. I created a page on this site, password-protected it, created a QR code that linked to that page, and we were good to go. On that page, after you plug in the password that’s inked at the bottom of the tattoo (and…

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Feb 24 2015

Shared decision making, please

By e-patients, healthcare industry, media commentary, technology

You’ve heard me before on the subject of shared decision making (SDM). Short version: I’m an advocate for partnership in medical care. Partnership that includes the values, outcome goals, and cost considerations of THE. PATIENT. Which means shared decision making. My buddies over at Software Advice have just published the results of a survey* they did in collaboration with the Mayo Clinic’s Knowledge and Evaluation Research (KER) Unit that took a deep dive into what’s happening in the real world with SDM, and what patients who are exposed to the process think of it. The key findings: A majority of patients (68 percent) say they would prefer to make collaborative decisions about treatment options with their healthcare provider. Forty percent of patients say they have participated in SDM before, and 21 percent have done so within the past year. Most patients surveyed say that SDM improves their satisfaction (89 percent) and makes them feel more involved in the care they receive (87 percent). Nearly half (41 percent) of patients report that they would be “much more likely” to adhere to a treatment plan developed using SDM. 47 percent of patients would be “extremely” or “very likely” to switch to a provider whose practice offers SDM. If you click through to the full article in the 2nd graf, you’ll see a number of graphs and charts reporting on patients’ responses to questions about provider choice and treatment protocol adherence – one of my least favorite words, but it’s a favorite of pharma and healthcare system peeps, so there it is. The pie chart that stood out for me was this one: Likelihood to Switch to SDM Provider   For the math-challenged, 80% of the patients surveyed were moderately, very, or extremely likely to switch to a healthcare provider who practices SDM. Physicians and other clinicians who interact…

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Feb 04 2015

Advocacy, trolls, and threats – oh, my!

By e-patients, healthcare industry, participatory medicine

Spending one’s days on the advocacy beat out here on the Wild Wild Web can be hugely rewarding. Like, say, when you start getting recognized by organizations like the WHO as a strong voice for people-who-are-patients. Then there are the days when you get called f***ing a**hole by strangers for simply speaking up. This is not a unique problem for patient advocates – this happens to anyone who speaks up in service of changing a cultural norm. Just ask MLK, who was trolled by none other than the FBI, who told him he should just kill himself. Imagine the fun the FBI could have had on Facebook, if MLK vs. FBI on Facebook had been a possible-thing in 1964. It can happen in the e-patient game, too, as shown in the Bill Keller/Emma Gilbey Keller/Lisa Bonachek Adams/NY Times dustup over whether or not patient blogs, particularly those about cancer, are TMI (Too Much Information – translation: “ew, gross”). Just being a woman online (guilty as charged) can be enough to draw the gimlet eye, and ire, of a mob of trolls. The #gamergate mess – if you click that link, pack a lunch, a raincoat, and some serious antibiotics – is an example of that. I recently tripped over a compelling piece on the Guardian’s site. The piece, by Lindy West, was about how she had been hard-trolled by someone who had gone so far as to create a Twitter handle that mimicked Lindy’s recently dead father, who she grieved for deeply. And who used that Twitter handle to troll her about her stance on rape threats. My dad was special. The only thing he valued more than wit was kindness. He was a writer and an ad man and a magnificent baritone (he could write you a jingle and record it on the same day) – a lost breed…

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Jan 15 2015

Patient Engagement. You’re doing it wrong.

By e-patients, healthcare industry

Now that I have, for my sins, been tagged as a patient engagement expert, I figure that entitles me to the occasional rant on the topic of the healthcare system – particularly the US iteration thereof – and its utter inability to understand how to connect and communicate effectively with its customer base: patients. If you’ve been a patient, for anything beyond a short trip to your primary care doc for something simple (and easily diagnosed) like a laceration or a minor infection, you know that arriving at the doors of The Medical-Industrial Complex is like being the new kid in school. There’s an old joke about bacon and eggs – the chicken is involved, but the pig is committed. In the ongoing sketch comedy/Shakespearean tragedy that is medical care. the clinical teams who deliver care, and the facilities in which they deliver it, are most certainly involved. Patients? We’re fully committed. We are engaged, we are fully present. What we’re not getting from the delivery side is an authentic invitation to engage. en•gage•ment: noun, a formal agreement, i.e. to get married; an arrangement to do something at a specific time; the act of being engaged, i.e. “continued engagement in trade agreements” Seems simple, right? Patient appears, asking for care. Clinical professionals deliver that care. Patient happy, clinicians happy, everybody wins. Oh, wait – did the doctor wash her hands before she started the physical exam? If the patient is aware of the importance of handwashing in preventing infection, and asks if the doctor lathered up and rinsed according to protocol, does that patient risk being labeled “difficult” or “aggressive”? If so, so much for patient engagement. Given that the statistics on handwashing in healthcare settings aren’t at 100% (~ 90% for RNs, < 75% for attending MDs in a 2008…

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Dec 07 2014

Keeping Patients in the Dark

By e-patients, healthcare industry

Back when I slaved in the depths of Hunter Thompson’s “shallow money trench,” we had a phrase we deployed whenever we thought the grownups were keeping us in the dark. We would say we’d been sent to Mushroom Land, where one is kept in the dark and fed sh*t, the better to keep us from making, or spotting, trouble. These were the very same grownups who, every four years like clockwork, would look at the calendar and say, “Holy crap, there’s a Presidential ELECTION this year?” But I digress. The medical-industrial complex has, for eons, kept its customers (commonly called “patients”) in Mushroom Land pretty consistently. For a very long time, that was facilitated by a lack of access to scientific knowledge for the common human, but that started to shift in the 19th and 20th centuries, as public education rose across most parts of the globe. Of course, “math phobia” and “science denial” are still pernicious little devils, but the average person with an 8th grade literacy level and an internet connection can find out about just about anything. I had the privilege of being awarded a seat at Dartmouth’s 2014 Summer Institute for Informed Patient Choice, or SIIPC14 for short, in late June 2014 (last week, as I write this). The purpose of the conference was to chew on topics and issues related to not keeping patients in the dark when it comes to making informed decisions about their health, their healthcare, and their relationships to the medical care teams they work with to gain or retain “best health.” This event had some serious meat on its bones, both in reputational throw-weight of the presenters and breadth of stakeholder groups represented in the audience. Dartmouth itself is no stranger to uber-smart-ness, particularly in healthcare, given the work and thinking that emerges from Geisel School of Medicine and the Dartmouth-Hitchcock Medical Center (one of…

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Nov 17 2014

#epatient – Are Millennials Born That Way?

By e-patients, EHR, health records, healthcare industry, participatory medicine

Most of the people I meet in my voyages ’round healthcare system transformation, grassroots edition, arrived at the portal of #epatient via a trip through the medical-industrial complex. Either they, or someone they cared for, wound up getting “a thing” – cancer, Parkinson’s, multiple sclerosis, player to be named later – and they found themselves inside the medical care delivery system, bewildered, and looking for answers. In short, most – not all, by any means, but most – are over 40. Imagine my surprise, and delight, when I was sent a report on a survey conducted with 385 randomly selected patients across the US*, with most of the responses coming from 18 to 35 year old millennials (people born 1982 and after). The survey asked them their opinions on shared decision making, open notes, and shared medical visits, three new medical practice models that are rising in adoption. Here’s the context of the survey questions: Shared decision-making involves the doctor and patient evaluating multiple treatment options and deciding together on the best course of action. Open notes is a policy allowing patients to view the medical notes doctors take about them during visits, which includes accessing those notes from home. Shared medical appointments, or “group visits,” involve attending an extended (60- to 90-minute) medical appointment with 10 to 15 other patients and one or more physicians. The survey results make me think we might finally be reaching a tipping point toward positive change, given that a big majority (76%) of respondents said they were extremely or very likely to use shared decision making. Over 60% were extremely or very likely to welcome open notes:   The demographics of the survey respondents was a pretty representative sample as far as chronic conditions go: One surprise in the demographic detail was that more men responded than women….

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Apr 23 2014

Human Health. It’s . . . Human.

By e-patients, healthcare industry, participatory medicine

Guess who got invited to WHO? No, really. The World Health Organization (WHO) invited yours truly to its First Global Experts’ Consultation in service of building a WHO framework for patient and family engagement. This is all due to my part in the ongoing anvil chorus that is the new Patient & Family Engagement Roadmap, developed by a group of dedicated folks from all parts of the healthcare compass over the last couple years, with funding from the Gordon & Betty Moore Foundation. I spent just over two days in Geneva, most of the time head-down in discussions about how the global health system – a patchwork of services delivered by an even patchwork-ier cadre of healthcare delivery systems – can better serve the needs of the people/patients who seek medical care and health information from them. This post will not attempt to report everything I saw/heard/thought/felt in that jam-packed 16 hours of ideas and outlooks. What I’ll share is my perspective on the challenges, the opportunities, the pitfalls, and the hopes that – in my view, at least – emerged during that lightning round of global spitballing. CHALLENGES There’s an old joke that asks, “What’s an elephant?” The answer: “A mouse designed by a government committee.” That’s the risk, and challenge, to any attempt to build a definable set of standards for a human effort. Education, transportation, trade, infrastructure, communication, medicine – all require some sort of standardization to make them useful to more than one or two people huddled over a campfire. A study of history will show that as much as we humans are great idea generators, trying to get the rest of the tribe to adopt our new idea isn’t easy. The father of quantum mechanics, Max Planck, said it best: “A new scientific truth does not triumph by convincing its…

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Dec 12 2013

Myriad Finds a Myriad of Ways to be Total Trolls

By cancer, e-patients, healthcare industry, participatory medicine

As the author of a rabble-rousing call to action, with a heavy dose of humor, on managing medical care called Cancer for Christmas, I have some street cred on both cancer and on dealing with tough personal health conversations over a Christmas standing rib roast dinner. My hair has been on fire since I heard that Myriad Genetics had patented genes, back in the previous millennium. First, how in the pluperfect f^ck is a naturally-occurring part of the human body – microscopic or not – patentable?? Second, why is a commercial enterprise allowed to dictate scientific research at a university? If they’re funding it … maybe. If they’re trying to prevent it from moving forward? What. The. F^CK? I expect crass commercialism at Walmart. When it comes to cancer research, a primary profiteering motive should be a capital offense. Yep, off with their heads, baby. It recently came to my attention, thanks to my buddy BraveBosom‘s tip-off … Myriad created campaign: “Make hereditary cancer a holiday centerpiece.” Spamming #BRCA and #BCSM. http://t.co/PrC0E3rIeK — Brave Bosom (@BraveBosom) December 19, 2013 … that the trolls at Myriad Genetics are up to newer, stinkier tricks: “helping” us make cancer a holiday centerpiece! Hey, Myriad, here’s a tip: WE DON’T TRUST YOU. You’re trolls. Support from you? I’d sooner eat dinner with Hannibal Lecter. If you haven’t heard of Myriad Genetics, here’s the Cliff’s Notes version: Founded in Salt Lake City in 1992 by, among other names, a Nobel Prize winner in chemistry, Walter Gilbert In 1997, Myriad is granted a patent on BRCA1 (one of two genes that indicate high risk of breast and ovarian cancer) In 1998, Myriad is granted a patent on BRCA2 (2nd of two breast cancer risk genes) BRCAnalysis, the company’s genetic test for breast cancer risk, costs $4,000 (you can get an entire genomic sequence for less than that – the Myriad…

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Oct 13 2013

MEDX: Persistence of Vision

By e-patients, healthcare industry

The firehose of amazeballs ideas and connections that was Stanford MedicineX is now over two weeks back in my rear-view mirror. That does not mean that my head has not been on fire ever since, chewing on all the data that got packed into my cranium in those three days. If you want to read a recap of the joyful noise that was those days, it’s over on MightyCasey.com. A forest fire between my ears has flared up with this thought: all the “big idea” thinking that happens when smart people gather to talk the future of healthcare is terrific. How can that be translated, today, into actual care improvement for the average human? Not just ePatients, but just-plain-folks? How can we start little centers of excellence in a free clinic for undocumented workers in the South Bronx, or in a village in AIDS-ravaged sub-Saharan Africa? Is there an app for THAT? I often feel myself at the crossroads of Possible and Are You F***ing Nuts. In other words, I dream of smartphone apps that could help a little boy in Ghana avoid getting malaria. I could lose an hour wondering how an app might help a little girl in Pakistan avoid a forced marriage at 12. As I type this, I’m thinking of how the kids in the public housing projects of the small city where I live could really use some how-to-manage-your-healthcare apps they’d be able to relate to. And the smartphones to go with them, of course. Is there an app for THAT? The grass, and its roots, are where we all stand. Healthcare, like charity, needs to begin at home. How do we help that happen? How do we empower children, and their parents, to understand how to interact with the healthcare system when so many of them are…

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Oct 10 2013

“Patients included.” On ‘roids. In a good way.

By e-patients, healthcare industry, participatory medicine

I had the great good fortune of being tagged as an ePatient Scholar for the 2013 edition of Stanford Medicine X. That allowed me to sit at the feet – literally, since the ePatients were the mosh-pit for the three day conference plenary stage – of some of the best and brightest minds in healthcare. And guess what? Many of those best/brightest were … PATIENTS. MedicineX (a/k/a MedX and #medx) is the uber Patients Included medical conference. It grew from seeds planted at conferences like Health 2.0 and Patients 2.0, for which seeds-to-beautiful-flowers gardener credit goes to Dr. Larry Chu and his team from Stanford Anesthesiology AIM Lab, who seem to prestidigitate rabbits out of hats without breaking a sweat. Or the hats. Or the rabbits. MedX – in my opinion, at least – trumps every other Patients Included event by not just including patients, but by putting them front and center throughout the program. In fact, I cannot think of a session that I attended that didn’t have someone who was there primarily as a customer of healthcare (commonly called “a patient”) on the platform, presenting or participating in a panel discussion. My ePatient socks were knocked off from jump thanks to the opening keynote by Michael Seres and Marion O’Connor on “The New Engaged Patient,” which was the morning keynote on Friday. Michael uses his blog as his personal health record, up to and through a lifetime battle with Crohn’s disease that led to his becoming the 11th patient to ever receive a bowel transplant, and only the 6th to survive that transplant experience. Michael is hilarious, and Marion is exactly the sort of caring brainiac any patient would like bedside as s/he battled a life-threatening illness. Here’s the video of their session: The rest of the day played out as a firehose of ePatient awesome,…

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