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Patients, Pharma, Partners

Generally speaking, I had always wanted to beat Big Pharma with a stick. I had no personal reason to feel that way. In my vast history of patient-being, I'd never had a particularly negative pharma experience—what's been prescribed has worked with no real side effects save for some fatigue and nausea here and there. Smart patients don't just swallow their pills. They research, learn the side effects and interactions ahead of time, and discuss with their doctors the impacts. Moreover these patients tend to see Big Pharma's advertising and drug reps not as sources of education but as shill. This perception has not been about which pharma company but rather it has been of all pharma companies.

Enter Jerry.

I'd heard rumor that there were pharma guys in attendance at the Partnership for Patients conference in Kansas City, MO. I was distrustful but curious, so it was between sessions that I caught Jerry's ear. Nothing about Jerry fit my pre-conceived notion of Big…

Crowdfunding Creativity

For as involved as I am in the national (and, at times, international) healthcare social media community, I find myself in a local void. The mountains I call home are not the epicenter of anything to do with healthcare or social media much less the two together. I've been chipping away, trying to carve out a foothold such that the wealth of education and opportunity found in healthcare and social media can enrich the lives of those I routinely connect with in real life as it has my own. It's slow going. Every fear, every socio-economic force that pushes back against the #hcsm tide can be found here. But today... today made a new friend.

As like minds are prone to do, @SociallyMD and I connected first via Twitter. Lo and behold — we live a mere 20 minutes apart. Prior to departing for Stanford's Medicine X conference, I suggested that since we were the only two Tweeps occupying the local #hcsm space, @SociallyMD and I should meet. And meet we did, instantly connecting profe…

Out of Place, In Our Element at Medicine X

I don't remember the flight to San Francisco the first year I went to Stanford for Medicine 2.0 conference. I don't remember the car we rented. I do however remember the drive to Palo Alto, highway lanes crowded with 5 p.m. traffic moving purposefully like so many industrious bees, in and out of lanes, swiftly circumnavigating the bay, heading south, south, into the city suburbs.

As we turned east toward Palo Alto, the commuters' sense of urgency gave way to tree-lined streets and bungalows with practical but well-landscaped yards. I'd first read about the digital Mecca in WIRED magazine in the late 90s, and then, as one of Douglas Coupland's wanna be Microserfs and an intellectually-endowed teen living in a rural Southern community, had daydreamed about as a place where the local chamber of commerce must have erected signs saying, "Welcome to Palo Alto! Nerds are safe here."

I'd imagined more habitrails and Legos, more glass and steel. And grass... I…

A Circle, A Stroke

Dusk had fallen as I nosed my car up to the locked gates of the small elementary school on the north side of town. I turned off the ignition, removed the keys, opened the car door, stepped out onto the pavement, rounded the back corner of the car, and waited for my husband to pop the hatch. He reached inside, both hands gripping aluminum and rubber, and pulled out my new lime green and toothpaste white bicycle.

"I am 33. I am 33. I am 33," I chanted beside him. It was as much to myself as to any passerby. Standing only five-feet-tall and dressed in pink shorts and a purple shirt, I looked the daughter to my husband's six-feet-tall-and-bearded father.

"You got it?" he asked, one hand on the bike as the other reached up to close the hatch.

"Yeah," I said, rolling the bike along with me toward a small footpath alongside the gated school driveway.

The empty school parking lot had been my idea. It was Sunday and school was not yet back in session, so the p…

Dr. Mike Sevilla Has Left The Virtual Building

Hearing of Dr. Mike Sevilla's decision to leave the realm of healthcare and social media was like stumbling across the obituary notice of a mentor's passing.

Sevilla was one of the first physicians I met online to take notice of my own work, and he joined Dr. Michael Ulrich of Mayo Clinic to be the first physicians to participate in a live Facebook dialogue with the patient-run, peer-to-peer support group for those affected by fibromuscular dysplasia, FMD Chat, on Nov. 12, 2011.

But by 2011, healthcare social media was an old hat for Sevilla. In 2006, he was one of the first physicians to engage in social media, blogging as Dr. Anonymous at a time when most of us were still experimenting with ICQ messaging, Napster, and MySpace. Colleagues appreciated his voice as he blogged about what interested him and what he felt was important, and thus he garnered a following and a community. Affectionally referred to as "Blog-A-Holics Anonymous," the community supported one ano…

Charydbis Paints, A Story About Regina Holliday

Her passion is a maelstrom, pulling the masses into her swirling sea of brushes and paint, Legos and cinderblocks, yet as does Charydbis, Greek's mythological representation of the tides, all who are drawn in by this great passion are returned—churned over, tumbled round, and changed.

Her intensity frightened me at first. There are few in this world who live with such a sense of purpose and clear sense of leadership, and too often those who do separate themselves from the sense humanity that drove them to their cause. What endeared Regina Holliday to me consequently was the way her voice strained and rose an octave as she told the story of her late-husband's diagnosis with kidney cancer. It was a voice rife with emotion yet sharpened on anger and urgency. It was a voice that had experienced loss as the result of wicked biology and hurt as the result of medical arrogance and incompetency. It was a voice I recognized.

Holliday fed her experiences into her art, becoming an advoca…

Patient Engagement: Are Apps Good Engagement Tools?

This week MedCity News shared an article about patient engagement that posits, "Patients today aren’t truly engaged with health technology or even with their own health." The article, written by Laura Wagner and originally appearing in VentureBeat, is a commentary based on a session from HealthBeat 2013, a VentureBeat presented conference.

VentureBeat "covers disruptive technology and explains why it matters in our lives," which well explains the session's title: “Consumer Health Apps: Human Centered Design." However, if the panel's conclusion was that patients are not engaged with health IT or their own health, then the human centered design part of consumer health apps is clearly failing—because the apps are not designed to meet consumer needs. No one needs an app.

In order to even want an app, a patient—engaged or otherwise—must first have a device. Far too many advocates on the health IT bandwagon assert that smartphones are ubiquitous. According t…

National Orange Popsicle Week Comes to Knoxville to Raise Stroke Awareness

Learn more about stroke from staff at University of Tennessee Medical Center and join in recognizing National Orange Popsicle Week from noon to 7 p.m. May 19 at Pop Culture, Knoxville’s gourmet popsicle shop.

“I love the simple and straightforward idea of taking something I love doing and being a part of—making popsicles—and using it as a basis for education,” said Jason Mitchell, Pop Culture’s owner. “It’s so much easier to learn and be receptive to awareness when you hare having fun.”

National Orange Popsicle Week (NOPW) began as a way for a young woman who suffered a major brain stem stroke at age 24 to raise awareness of stroke in young people. One in five strokes occurs in adults age 22 to 55. Stroke is the fourth leading cause of death in America and a leading cause of adult disability, according to the National Stroke Association.

UT Medical Center, which the American Heart Association has recognized for improving stroke care by promoting consistent adherence to the latest scient…

Whichever Way You Swallow It - A New Medication Adherence Method

I bought a pill box.

It is a box — for pills.

It is not small, or trendy, or cute, or ironic. It's not some repurposed cigarette case in which I keep Midol and Band Aids. It's a giant, plastic, albiet somewhat colorful, rectangle. Forget pocket-sized. This is a portfolio of pills, a veritable Advent calendar of pharmacology.

Each morning, I snap open a color-coded translucent lid marked with a time and respective day of the week and turn the entire ratting contraption over to dole out a pre-selected handful of medicine. The morning brings lots of colorful ovals—purple, green and blue, white, among others. In the evening I repeat the process, distributing pink, beige, and aquamarine. Saturday brings the cobalt blue sheen of Vitamin D. Snap, shake, pop, swallow. In only a matter of days, my medication process has become a thoughtless process of repeated motions, and I think I like it that way.

I've resisted buying a bill pox for years. "They're for old people,"…

What's The Point in Telling Stories?

Penny's eyes are disconcertingly blue. They're the kind of blue only seen in carnival glass. Penny looks directly at me when she speaks, her eyes ever so slightly wider and eyebrows just barely raised such that I know that her interest is honest. She's not much of one for fussy things, never pulling back her long blond hair that falls in casually disheveled waves just beyond her shoulders. She enjoys golf, and though I loathe the game I imagine it suiting both her frame and her style of competition—minor adjustments made to suit varying circumstances and always played with the goal of personal bests in mind.

Thomas is lean, wears slack with plaid shirts—cotton or flannel depending upon the season—and sometimes allows his mostly brown, but somewhat salt and pepper beard to get ahead of him, its growth seemingly less purposeful than opportunistic. He drives a reasonably-sized pick-up truck. His greetings are an equal mix of eagerness and caution, as he peers over the top of …

Dissing Ability

Whether in odds or evens, flights, or cases, stairs divide the cans from the can nots.

When I was discharged from the hospital, misdiagnosed then with vertigo and re-diagnosed later with a stroke, I was unsure how I was going to get inside my house. A steep flight of wooden stairs ran from the back door to the kitchen. It took two sidewalk steps and another four to get to the front door. Despite a week of resting recovery, I was unable to walk unaided. I was given a grey and chrome walker just like my great-grandmother had used, and bounced along the hospital halls like a sad little pinball. Per my request, a physical therapist—alarmingly old and tiny—hobbled me to the fire escape stairwell just outside my room and spent 20 minutes clutching to a safety band lashed around my waist as she explained "good legs go to heaven, bad legs go to he..." She didn't actually say "hell" but instead raised her eyebrows on the first syllable of the word and then went silent a…

#HCSM Review—Health Affairs & Rare Disease Edition

This Feb. 13, 2013 edition focuses on the following themes: the Health Affairs Briefing Reminder: New Era Of Patient Engagement held on Feb. 6 in Washington, D.C. and subsequently released edition of Health Affairs — and — the upcoming Rare Disease Day: Disorders Without Borders to be held worldwide on Feb. 28. Included within these focus areas are topics such as health literacy, drug development, healthcare costs, patient-centered care, and deliberations on what makes one a patient.

Health Affairs is the New Shirtless Dancing Guy
Nick Dawson Dawson attended the HA briefing in advance of the journal's February edition dedicated to all things ePatient. He calls attention to the fact that no "actual patients" were on the panel, while appreciating what HA has done with the issue. Listen in to audio from the HA briefing.
‘Patient Activation’: Real Paradigm Shift or Updated Jargon?
Jacob Molyneux
A nice summary of key issues from the HA briefing, which Molyneux, American Journal …

Paying Lipservice to Patient Engagement

Health Affairs held a briefing this week in Washington, D.C. focused on the content of the magazine's February 2013 edition, New Era of Patient Engagement. The briefing boasted a notable list of policy wonks as speakers including Howard Koh, Assistant Secretary for Health, US Department of Health and Human Services; David Colby, Vice President of Public Policy, Robert Wood Johnson Foundation; and Joe Selby, Executive Director, Patient-Centered Outcomes Research Institute. Yet no one on the panel bore the simple title of ePatient.

The event's twitter stream (tagged #HA_Patients) hit a few highlights, and a podcast was released after the briefing. These tech alternatives to actually reading the HA edition will have to suffice for most patients due to an all too common problem—journal access. In the medical and academic journal market, one must pay to read. An individual subscription to HA, delivered online, is $143 per year. A print subscription is $158, and the Premium subscrip…

#HCSM Review - Call for Submissions, Feb. 13 Edition

The Afternoon Nap Society will once again be hosting HealthCare SocialMedia Review, the blog carnival for those interested in health care social media. 
The Feb. 13, 2013 edition will focus on the following themes: the Health Affairs Briefing Reminder: New Era Of Patient Engagement held on Feb. 6 in Washington, D.C. and subsequently released edition of Health Affairs — and — the upcoming Rare Disease Day: Disorders Without Borders to be held worldwide on Feb. 28. Included within these focus areas are topics such as health literacy, drug development, healthcare costs, patient-centered care, and deliberations on what makes one a patient (are we truly ALL patients?).

Email submissions should include the following information:

Email Subject Line: HealthCare SocialMedia Review
Blog Title:
Blog URL:
Post Headline:
Permanent link to post:
Name, Username, Nickname, or Pseudonym:
Description or brief excerpt:
Deadline for submission is Tuesday, Feb. 12 at NOON. Email submissions to theafternoonnapper (…

ScienceOnline 2013

This week I'm heading down to the Research Triangle—aka where I was born and where I returned to go to college—for ScienceOnline 2013. In short, it is a gathering of 450 people who love science and particularly love writing about science. It may well be the nerdiest (said inclusively and with endearment), smartest, and most nitpicky collection of conference goers of which I've ever been a part. I'm thrilled.

I'm fortunate to be one of only 28 to make it on the list for the Duke Lemur Center tour on Wednesday afternoon. The Duke Lemur Center, established in 1966, is the world’s largest sanctuary for rare and endangered prosimian primates. There are about 250 animals, including 233 lemurs encompassing 15 species, along with lorises from India and Southeast Asia and bushbabies from Africa. Speaking of babies, there's a new one. And we get to meet her.

As the tweets (#scio13) have increased in number as the conference approaches, there have been mentions of candy poker…