22 May 2013

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 to Pew Internet statistics, 85 percent of U.S. adults have a cell phone. Of that 85 percent, 53 percent have a smartphone. Of the 53 percent who have a smartphone, 52 percent have used that smartphone to collect health information, Pew Internet reports. The additional questions to ask are—of that half of a half, how many are using an app and how many remain patients of Dr. Google? One report from Adeven, a mobile analytics firm, provides some insight—nearly 400,000 apps sit in the iOS App Store classified as "zombies," generating few downloads and little to no revenue for their producers. 

The beauty of the internet's search function is the power of suggestion. One doesn't need to know exactly what one is looking for in order to embark on a search. With each return of results comes an addition of knowledge that enables one to further refine one's search and/or run off down an entirely different rabbit hole of information. Apps limit this kind of unfettered exploration. Their specificity of operation—the very thing that makes them a marketable app—is exactly what keeps them from being the go-to tool for inquiring minds. To want to use an app is to want to do a specific thing. To engage patients in this form of health IT we must not ask how we get patients to use an app, but how we get patients to want to do the certain thing in question. 

Whether we want patients to keep track of their blood pressure, count calories, log blood glucose readings, or learn about cellular reproduction, we must first find their source of motivation. Games and rewards only go so far in triggering prolonged motivation—but show me the game that rewards me not with new flowers for my virtual garden or a special frog to breed and instead with reduced insurance premiums and I'll make it part of my daily routine. What patients want is to define their own goals and outcomes. To be "healthy" is couched in institutional ideology of standards and measurements; yet a patient who couldn't care less about his BMI and blood pressure may care enormously about living long enough to walk his daughter down the aisle or celebrate his 50th wedding anniversary. To engage a patient in his own health one must find what matters to that individual patient. 

To engage a patient in health IT is thus a secondary matter, and engaging patients in mobile health IT a tertiary one. The benefit of utilizing health IT to achieve the patient's self-defined goals and outcomes must be clearly defined with a detailed measure of cause and effect. Should the aforementioned patient who wishes to walk his daughter down the aisle receive a doctor's recommendation to lose 10 percent of his body weight, the benefits of doing so must be illustrated in relation to his goal. According to a recent New York Times article, a recent national study found that "patients who lost a mere 7 percent of their total body weight reduced their risk for diabetes by 58 percent." For the patient to gain his own definition of meaningful use out of any health IT, the data input must provide data output that illustrates what successful weigh lost accomplishes in relation to his goal—the real impact on his disease risk, how much easier it is for his heart to pump, the decreased burden on his knees. Such feedback ties directly in with health literacy, as in order to engage in one's health one must understand the why before even getting to the how.

Join in the discussion about patient engagement at MedCity News' ENGAGE conference, held June 5-6 in Washington, D.C., where I'll be on a panel talking about what patients do and do not want from those seeking to engage us. 

11 May 2013

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 scientific treatment guidelines, will be providing free blood pressure screenings and stroke education during the popsicle-based awareness event.

A stroke occurs when there is an interruption in blood flow from the heart to the brain, causing brain cells to die. The May 19 popsicle event at Pop Culture will raise funds to purchase iPads for the UT Stroke Center’s use in aphasia treatment. Aphasia is a disorder caused by damage to the parts of the brain that control language. Aphasia can result in difficulties reading, writing and speaking.

“Stroke is a devastating disease: it happens like a tornado and the lives of the survivor and their families are never the same,” said Jennifer Henry, BSN, RN, CNRN, director of the UT Stroke Center. “Many people mistakenly believe that stroke only happens when people are older, when in fact, stroke can happen at any age. It's critically important that people take a look at their own risk factors and take steps to reduce risk. Everyone, even children, can learn to recognize the warning signs of stroke and the importance of calling 911 when stroke symptoms happen. NOPW shares this message in a unique way.”

Amy Wooddell’s first symptoms were dizziness and nausea, which didn’t neatly fit the acronym FAST, which is used to recognize and act on stroke symptoms—Face: does one side of the person’s face droop? Arms: if the person raises both arms, does one arm drift downward? Speech: does the person’s speech seem slurred or strange? Time: if any of these symptoms are observed, call 9-1-1 immediately.

Wooddell went to the emergency room only to be given medication for vertigo and sent home. The next morning she felt worse. The cause was a dissected vertebral artery, one of the major arteries leading to the brain. Doctors were unable to treat the dissection, and Wooddell later that night suffered a brain hemorrhage and lapsed into a coma. When she woke up days later, she was paralyzed and unable to speak.

Wooddell’s recovery was arduous, including 30 days in the intensive care unit. As she became more vocal, she finally was able to tell her new husband that she loved him—and that she wanted an orange popsicle.

However, Wooddell wasn’t allowed solid foods—even a popsicle—until she passed a swallowing capability test while in an inpatient rehab unit. The day she did was a victory, and her rehab caseworker bought an entire box of orange popsicles for Wooddell and her family. The orange popsicle was a much craved delight after nothing but water and liquid nutrition and became a symbol of recovery.

Fellow young stroke survivor, Sarah E. Kucharski learned about National Orange Popsicle Week through social media. The mission and the method resonated with her. Like Wooddell, Kucharski had a stroke at age 27 that was first diagnosed as vertigo, despite having a complicated vascular history. She spent a week in the hospital with extreme dizziness, double vision, and the inability to walk unaided. Nonetheless she was told that her symptoms would go away as quickly as they had developed and sent home with a walker.

It wasn’t until the first night out of the hospital that Kucharski’s discovered that she had no temperature or pain sensation on the right side of her body. She consulted with her primary care doctor who referred her to a neurologist who immediately said that, given her symptoms and Horner’s syndrome causing her left eye to droop, her case was “a text book” stroke scenario.

Kucharski’s recovery was self-driven, and it took another four years for her to finally receive the diagnosis of fibromuscular dysplasia (FMD), a rare vascular disease that can cause narrowing of the arteries, arterial dissection, aneurysm, and stroke. Kucharski has a rare version of the rare disease, which has no cure, and no real treatment other than management of symptoms and surgical repair of the effected arteries. She has used her own experiences as motivation to found an international nonprofit organization dedicated to those affected by fibromuscular dysplasia—FMD Chat.

While Kucharski and Wooddell share similar stroke stories—and a love of popsicles—they don’t share geography. Wooddell lives in Kansas, and Kucharski lives in Western North Carolina. NOPW may be rooted in Kansas, but strokes strike all around the world, so once Kucharski learned of NOPW, she wanted to get involved.

As managing editor of magazine dedicated to the Southern Appalachian region, Smoky Mountain Living, Kucharski got to know Knoxville through her work travels. She had read about Pop Culture and visited the mobile popsicle vendor’s bricks-and-mortar shop on Walnut Street last year. With the goal of bringing NOPW to the region, she reached out to Pop Culture’s owner.

“You should check out this event. If there’s anyone who could make it happen in Knoxville, it’s you,” she wrote to Mitchell on the Pop Culture Facebook page.

Mitchell’s response was enthusiastic. He immediately offered up the Pop Culture shop where he makes and sells his famous popsicles using ingredients from local vendors, milk without rBGH growth hormones, and sweeteners such as organic cane sugar, honey, or agave. He’s even put extra effort into making the color orange.

“It took me months to find something natural, and a company out of Louisville, Ky. formulated some orange coloring out of Beta-Carotene for me to use, and it's odorless and tasteless,” Mitchell said.

For NOPW, Mitchell will be serving up his Orange Cream and Mango popsicles, but he isn’t afraid to get creative.

“I may make something else that is orange, but I have to play around a bit with the ingredients and their respective colors to see if something else ‘Orange’ is possible,” Mitchell said. “The bright red of Strawberry Lemonade or the robust purple of Blueberry Vanilla would be immune to adding natural orange color.”

Pop Culture is located at 706 Walnut Street next to the Knox County Public Library, Connect via Facebook at facebook.com/popcultureknox. To learn more about National Orange Popsicle Week, visit nopw.org or facebook.com/nationaorangepopsicleweek.

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