Engaging Patients in Research

Dec 3, 2013, 8:00 AM, Posted by Paul Tarini

What happens when you engage patients in research? That’s a question RWJF is exploring with grants to Sage Bionetworks and PatientsLikeMe to build online, open-source platforms that give patients the opportunity to contribute to and collaborate on research.

Sage Bionetworks’ BRIDGE platform will allow patients to share and track their health data and collaborate on research into diseases and health problems that matter most to them. Three research projects will be piloted on BRIDGE in the coming year, focusing on diabetes, Fanconi anemia and sleeping disorders.

PatientsLikeMe’s Open Research Exchange (ORE) will give researchers and patients a space to work together to develop health outcome measures that better reflect outcomes that are meaningful to patients. After several months building the ORE, PatientsLikeMe is now in testing mode, putting the platform through its paces. But it’s not just an academic exercise. PatientsLikeMe has recruited four researchers to pilot the ORE. These researchers will be providing feedback on the site while working with patients in the PatientsLikeMe network to develop and test an initial set of health outcome measures.

Sage Bionetwork’s Stephen Friend discusses collaboration between patients and researchers

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Think Safety as Thanksgiving—and Holiday Shopping—Approaches

Nov 27, 2013, 12:00 PM

file Photo Credit: tshein, via Flickr

Among the best pieces of advice people can look to today, the day before Thanksgiving, is a primer on safe food preparation from the U.S. Food and Drug Administration, including a video on just how to stuff that turkey.

Additionally, when it comes to safety this holiday season, there are also ways to help keep yourself and your purchases safe as Thanksgiving morphs into Black Friday. Tech guru Shelly Palmer reported recently that, according to the New York City police department, 14 percent of crime in that city is linked to Apple computer products, while police in other cities note technology thefts of all kinds as the holiday shopping season gets into full swing. Apple is alerting buyers of the latest model iPhones that the devices now come with a security feature that requires a User ID and password to disable the "Find my Phone" feature, which helps police track down stolen phones. Tech experts say widespread use of the Apple feature can help deter theft--and possible harm--during a robbery.

Another thing to be aware of this shopping season, when people will be out and about on busy streets, is what's come to be known as the "Knockout Game," where the goal is knock a random person unconscious with a single punch. CNN and other news outlets have posted stories about reports of random violence in several U.S. and foreign cities, and at least one city is considering punishing juveniles found guilty of the attack as an adult rather than a child--which can mean years of jail time. However, The New York Times recently added its voice to the growing national discussion with a story questioning whether the "game" is in fact an urban myth, saying that it's possible these assaults are random acts of violence, and that even New York City police officials are still trying to determine the truth.

Nonetheless, while questions over the "game" remain, the assaults are very real. According to CNN, a police spokesman in Pittsburgh says people who appear distracted--such as those checking phones or listening to music through headphones--may be more vulnerable to attacks.

>>Bonus Link: The National Crime Prevention Council offers tips on safe holiday shopping, including shopping with a friend for added security.

This commentary originally appeared on the RWJF New Public Health blog.

National League for Nursing Aims to Bridge Gap Between Education and Practice

Nov 27, 2013, 12:00 PM

Beverly Malone, PhD, RN, FAAN, is chief executive officer of the National League for Nursing (NLN). She was recently elected to the Institute of Medicine. Last month, the NLN announced the launch of Accelerating to Practice, a new program designed to help new nurses move more seamlessly from education to practice. It is the inaugural program of the NLN's Center for Academic and Clinical Transitions.

Human Capital Blog (HCB): Why is Accelerating to Practice needed?

Beverly Malone: We've always known that there is a difference between how nurse educators view graduates of nursing programs and how nursing directors view graduates. But we never knew how deep the divide was. A recent survey showed that 90 percent of educators thought that nurse graduates were doing just fine, but almost 90 percent of directors felt that nurse graduates did not have the skills that were needed to practice. That kind of a divide is not a small one. It has so much to do with how care is delivered, and the League felt compelled to do something about it.

HCB: What explains the divide?

Malone: We don't talk enough to one another. There are some exemplars out there where educators and administrators are on the same wavelength, and they have worked very hard to ensure that graduates are prepared in a way to move quality patient care forward. But overall, that's not the picture throughout the United States.

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Behavior Change: The Motivation Bias

Nov 27, 2013, 7:00 AM, Posted by Pioneer Blog Team

Headshot of BJ Fogg BJ Fogg

Each month, What’s Next Health talks with leading thinkers about the future of health and health care. Recently, we talked with BJ Fogg, director of the Stanford Persuasive Tech Lab, to discuss motivation versus ability, and to better understand which matters more in creating long-term change. In this post, Debra Joy Pérez, former assistant vice president for Research and Evaluation at the Robert Wood Johnson Foundation, who is now working with the Annie E. Casey Foundation, shares her impressions of BJ’s model and how it might impact the work of organizations like ours.

By Debra Joy Pérez

There is something magically simple in how BJ Fogg’s Behavioral Model addresses behavior change. When just three elements coincide—motivation, ability and a trigger—behavior change happens.

From my own experience, I can tell you that BJ’s model can work in developing new and healthy habits. I heard from BJ that immediately after he pees, he does push-ups. He is attaching a new habit he wants to create to an old habit he already has. Every time he relieves himself, he is triggered to perform a simple action that has him looking and feeling healthier. Like BJ, I wanted to improve my health (motivation)—specifically, I wanted to drink more water. My trigger was green tea. I drink a lot of it, so after each cup, I remember to fill the empty cup with water. I’m pleasantly surprised when I see that I’m nearing half a gallon by the middle of the day. It's working.

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A New Holiday Tradition—Tasty Recipes that are Healthy, Too

Nov 26, 2013, 5:01 PM, Posted by Catherine Arnst

Thanksgiving is almost upon us, ushering in a month-long season of holiday parties, groaning boards of food, favorite family recipes, cookie swaps, and an extra five pounds around the waistline. Instead of just giving in to the excess and making January the month of dieting, perhaps we could make a few adjustments. I’ve asked around the Foundation staff for some healthy holiday recipes instead of the usual green bean casserole and cream-laden sides. Here are some tried and true alternatives, that are kid–friendly as well!

In fact, why not invite any children about the house (or adults who are still kids at heart) to help whip up some of these dishes. Children love to grate, stir, and shake, and the older ones will go at chopping with a vengeance. It’s never too early to teach them to cook, as discussed on this blog a few days ago.

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Empathy and Appreciation for the Impact of the Social Determinants of Health

Nov 26, 2013, 11:00 AM, Posted by Gretchen Hammer

Gretchen Hammer, MPH, is executive director of the Colorado Coalition for the Medically Underserved. She works with local and state health care leaders and policy-makers to improve Colorado’s health care system.

Healing is both an art and a science. On one hand, clinicians are intensely driven by the quantifiable, the measurable, and the evidence-based algorithms that lead to accurate diagnosis and treatment as well as allow us to develop new innovations in medicine. However, healing is also an art. Patients are not just a collection of systems that can be separated out and managed in isolation of the whole patient. Each patient and their family has a unique set of values, life experiences, and resources that influence their health and ability to heal. Recognizing the wholeness and uniqueness of each patient is where the art of healing begins.

Empathy is defined as “the ability to understand and share the feelings of another.” It takes presence of mind and time to be empathetic. For clinicians, finding the balance between the necessary detachment to allow for good clinical decision making and empathy can challenging.  This balance can be particularly difficult for students and new clinicians.

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“An Educated Consumer is Our Best Customer:” Four Things to Know About Transparency In Health Care Prices, Costs and Quality

Nov 26, 2013, 10:14 AM, Posted by Susan Dentzer

Watch our December 6, 2013, FirstFriday Google+ Hangout archive on transparency in health care.

Panic about high health insurance premiums. Fears about high-cost health-care providers being cut out of health plan networks. Worries that the health plans now available through health insurance exchanges won’t cover the care that patients need.

Welcome to the rollout of Obamacare....right?

Actually, with the exception of the new health insurance exchanges, all of the phenomena described above have a long history. Similar concerns were voiced loudly in the late 1980s and 1990s, when “managed care” in health insurance became a dominant force on the health care and health insurance landscape.

What’s amazing to people who lived through both of these eras—then and now—is how little has changed.  

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Faces of Public Health: Wendy Landman

Nov 25, 2013, 11:05 AM

More than 145 million adults now include walking as part of a physically active lifestyle, according to a report released by the U.S. Centers for Disease Control and Prevention (CDC) earlier this year. More than 6 in 10 people walk for transportation or for fun, relaxation, or exercise, or for activities such as walking the dog. The percentage of people who report walking at least once for 10 minutes or more in the previous week rose from 56 percent in 2005 to 62 percent in 2010.

But creating communities amenable for walking takes much more than the proverbial “putting one foot ahead of the other.” Over the last decade, more and more communities have done local walkability assessments, added sidewalks, installed or improved crossing signs and signals, and vastly increased programs such as Walking School Bus, which encourages parents and kids who live a mile or less from school to join safe walking programs.

And behind most of these advances is a walkability advocate who knows the transportation chiefs, the local policymakers and the laws in other jurisdictions that promote or dissuade walking. In Boston, that person is Wendy Landman, executive director of WalkBoston, a non-profit membership organization dedicated to improving walking conditions in cities and towns across Massachusetts.

“Our goal is to make walking and pedestrian needs a basic part of the transportation discussion,” says Landman.

NewPublicHealth spoke with Landman at WalkBoston’s central Boston offices during our visit to the city for the recent American Public Health Association annual meeting.

NewPublicHealth: Why is walking advocacy so important?

Wendy Landman: At WalkBoston we sometimes describe walking as the club that everybody belongs to and nobody joins. Because it’s such a basic element of what every human being does, walking often gets forgotten, and it gets forgotten in many different ways. At the most basic level, walking is often left out of land-use planning and civil engineering. We forget to incorporate sidewalks and safe-street crossings. We forget to design and build our communities so that people can actually walk between places—whether it is kids walking to school or to a friend’s house, or adults walking to shops or church. That’s not to say that we should all live in a scale that’s just walkable, but many things that we do every day, day in and day out, would be better for human beings and for the planet if we could walk to some of them.

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Get Out of the Drive-Thru Lane. Learn to Cook!

Nov 22, 2013, 1:32 PM, Posted by Catherine Arnst

Some statistics worth pondering: According to the U.S. Bureau of Labor Statistics, the average American spends only 33 minutes a day on food preparation. Just over half of Americans bother to cook every day. On the other hand, 33 percent of children and 41 percent of teenagers eat fast food, every single day.

These fast food children are consuming 126 additional calories, and the teens 310 extra calories, than if they had avoided the chains, says Fast Food Facts 2013, a new report by the Yale Rudd Center for Food Policy & Obesity and funded by RWJF. Most of these children are eating adult meals, too, not the smaller-portioned children’s meals on offer. Not that it would matter, since less than one percent of all kids’ meal served at fast food chains meet recommended nutrition standards.

It’s not much of a stretch to link the lack of home cooking, a diet of fast food, and the fact that a third of U.S. children and adolescents are obese. So, what’s a parent to do? Well for one thing, we could learn to cook.

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The Imperative to Improve Gallbladder Disease Treatment and Outcomes for Men

Nov 22, 2013, 9:00 AM

SreyRam Kuy, MD, MHS, is an alumna of the Robert Wood Johnson Foundation (RWJF) Clinical Scholars program, and a vascular surgery fellow at the Medical College of Wisconsin.

Gallbladder disease, and specifically gallstones, can present as pain in the upper abdomen, usually after eating fatty foods.  More severely, gallstones can progress to an inflammation and infection called cholecystitis or cholangitis, both of which require prompt surgical treatment.  Gallbladder disease is an important medical problem as it accounts for $650 billion in health care costs annually in the United States[i], making it the second most costly digestive disease in the country.[ii] With more than 700,000 cholecystectomies (surgeries to remove the gallbladder) performed annually in the United States, gallbladder disease is the number one reason for abdominal surgery in the nation.[i]  Cholecystectomies can be done with traditional surgery (open cholecystectomy) or performed minimally invasively (laparoscopic cholecystectomy).

The National Health and Nutrition Examination Survey estimates 6.3 million men and 14.2 million women in the United States have gallbladder disease.[iii]  It occurs two times more frequently in women than in men.[i][iv] However, during the reproductive years, women have a four-fold higher prevalence of gallstones than men.[iii] As a result of its disproportionate burden on women, gallbladder disease is a critically important topic in women’s health.

There is currently a lack of consensus on whether a patient’s gender affects how soon they get surgery for cholecystitis, what type of surgery they get (open versus laparoscopic cholecystectomy), and how they do after surgery.  My prior work and that of my colleagues has clearly shown that older age negatively impacts how patients do following cholecystectomy.[v] Therefore, to determine whether gender, independent of other factors, affects outcome, we examined a national group of patients hospitalized with cholecystitis over an eight-year period, age-matched to account for the effect of age, and identified gender-based differences in patients hospitalized with cholecystitis. We measured outcomes of women compared with men who underwent cholecystectomy during that admission for cholecystitis, and identified factors associated with outcome.

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