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Boot Camp Translation cuts medical jargon, improves community health

A new study by University of Colorado Anschutz Medical Campus researchers confirms the success of a new patient-engagement method called Boot Camp Translation, which turns complex medical screening guidelines into locally relevant health messages. Multiple studies show that use of the process has improved cancer testing, asthma management and hypertension control.

The article appears in the April issue of the journal Health Affairs, the nation’s leading journal of health policy thought and research and was authored by Jack Westfall, MD, director of the High Plains Research Network at the CU School of Medicine and colleagues from the Colorado Clinical and Translational Sciences Institute.

“Our work shows that all research stages may benefit from patient engagement and the translation of complex medical jargon into locally relevant language,” said Jack Westfall, MD. “What if patients were involved in the creation of evidence-based guidelines from the beginning? The final recommendations would be more patient-centered and ultimately more effective.”

The High Plains Research Network’s Community Advisory Council, made up of farmers, teachers and other community members in eastern Colorado, identified a lack of community knowledge about colon cancer and developed the Boot Camp Translation process in 2005. The Colorado Clinical and Translational Sciences Institute tested the Boot Camp Translation process in communities throughout the United States from 2012 to 2015, using the process more than twenty-five times to address colon cancer prevention, hypertension, asthma, diabetes, depression and other community health concerns.

The paper, “Reinventing the Wheel of Medical Evidence: How the Boot Camp Translation Process is Making Gains” provides a brief history of the process and describes its use to translate and disseminate evidence-based medical guidelines. The process has successfully engaged in long-term research projects with patients in rural, urban, African American and Latino communities in Colorado, Iowa, Oregon, North Carolina and Wisconsin.

Boot Camp Translation is a robust eight-month program in which patients and community members become citizen experts on a clinical topic that they have previously designated as a priority. In conference calls and in-person meetings, the community and participating research group learn together about the topic, craft messages with information they want family and neighbors to know and design dissemination methods to get health messages and materials into the community. The final messages are evidence-based and meaningful at the local level.

With evidence of Bootcamp Translation’s success, policymakers can support deeper patient engagement throughout the entire medical research enterprise. The result is that investment in medical discovery will better benefit the communities, practices and patients who pay for it.

 

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Consumers reveal obstacles to using nursing home quality ratings

A study of 63 people who placed a relative or friend in a nursing home in the previous six months found that few people were aware of the website Nursing Home Compare, published online by the Centers for Medicare and Medicaid Services (CMS) to help families find the best and closest available facility.

The study, conducted by researchers at the Colorado School of Public Health at the University of Colorado Anschutz Medical Campus and the University of Chicago, found that those who viewed the website often did not trust it, at least initially.

Many were interested in questions that the website did not answer, such as how to find a nursing home that was affordable, offered multiple activities for residents and had beds available for people who rely on Medicaid. Most of those interviewed understood the importance of staffing but showed little interest in the core clinical-quality measures such as pain management, the use of restraints, and prevention of pressure sores, infections and falls.

“This website could become a handy, useful tool, offering consumers a starting point to select high-quality providers,” said study author Tamara Konetzka, PhD, professor of public health sciences at the University of Chicago and lead author of the study, published April 4, 2016, in the journal Health Affairs. “But before people can turn to it, they need to know it is available. And before they trust it, they need to see clearly where the data come from.”

Retired woman having professional care stock photo

Even then, for residents that rely on Medicaid, obstacles to choosing high-quality nursing homes, such as distance to those homes, may remain.

CMS launched the five-star version of their web-based Nursing Home Compare (NHC) in December, 2008, to help families find the best available nursing home. The system is designed to combine multiple measures into a simplified five-star rating. Five stars mean “much above average.” One star indicates “much below average.”

“The five-star ratings allow consumers to compare nursing homes considering multiple attributes at once, much like Amazon and Yelp ratings,” said co-author Marcello Perraillon, PhD, assistant professor of health, systems, management & policy at the Colorado School of Public Health at CU Anschutz.

NHC collects data from all CMS-certified nursing homes in the United States and splits the information into three categories: results from periodic health inspections, staffing ratios per patient, and a cluster of clinical quality measures. Then, they combine the data to produce an overall rating.

“Despite enthusiasm by many when shown the Nursing Home Compare example, a number of respondents were skeptical about the source and accuracy of the data and thought that the nursing homes themselves might have control over the site,” the authors wrote.

The respondents were not far off. The inspection ratings are based on surveyor reports. “Those are considered to be more objective,” Konetzka said. “But the staffing data and the quality measures are based on self-reported data supplied by nursing home managers. There is more skepticism about these measures.”

A quick survey shows that many nursing homes with an overall one-star inspection rating are rated as four or five stars for quality, based on their self-reported data.

To counterbalance this discrepancy, the system gives much greater weight to inspection ratings, Konetzka points out, so overall ratings tend to mirror the inspection rating.

CMS is beginning to collect payroll data, she said, which should increase the accuracy of staffing ratings starting in the second half of 2016. They are also adding new quality measures, “but some underlying reliability problems may remain,” Konetzka said.

A lot has changed since Nursing Home Compare was introduced online in 2008, the authors note. Studies from 2003 and 2006 mention limited use of the internet by families choosing a nursing home, but the current study, ten years later, found that “almost all respondents had access to the Internet and used it in their decision-making process.” The current study also found greater emphasis on costs and on how to gain access to high-quality nursing homes for those dependent on Medicaid, who make up 60 percent of nursing home residents.

Konetzka and Perraillon suggest ways to overcome some of NHC’s problems, such as the lack of awareness. It is costly to advertise a product that people may not anticipate needing, they note, but the widespread growth of internet use, with a boost from traditional sources of information such as family, friends, and health care providers, should slowly raise awareness and help consumers distinguish between verified data and corporate boasting.

They urge CMS to highlight their role in collecting the data for Nursing Home Compare and to make it clear that they, and not the nursing homes, maintain the website and, increasingly, collect the data. CMS could also improve the website’s appeal, they suggest, by adding more information about costs, inserting opinions from nursing-home residents about the quality of their experience, and quantifying the availability of activities for residents.

“For the website to gain acceptability and use, CMS should keep improving the accuracy of the underlying data,” Perralion said. “Nursing Home Compare should continue evolving.”

The authors also encourage families to find a nursing home that meets their loved one’s particular needs and to visit several nursing homes to see how they treat residents. One nursing home resident they surveyed recommended surprise visits.

“The 5-star system is one-size-fits-all. It doesn’t distinguish between particular types of needs, such as dementia or cancer,” Konetzka said. Some nursing homes cater to particular religious or ethnic groups, for example, which may improve the social life and comfort level of residents. “That may even trump some clinical-quality concerns.”

On the whole, “there is still some noise in this system,” Konetzka said, but with the proposed improvements, “I believe there is more and more signal within that noise.”

The Agency for Healthcare Research and Quality funded this project.

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Sen. Bennet, FDA chief see CU Anschutz advances in diabetes care

The days of constantly checking his blood-sugar levels are over for Jason Gensler, who has type 1 diabetes. Now that he wears a state-of-the-art artificial pancreas that automatically monitors and adjusts his levels, a huge burden has been lifted.

Diabetes research at Barbara Davis Center

Kelli Raleigh, outreach manager for the JDRF Foundation, displays her continuous glucose monitor to Sen. Michael Bennet (second from left) during the senator’s visit. At far left is Robert Califf, MD, commissioner of the Food and Drug Administration, and in the center is Robert Garelick, executive director of JDRF’s Rocky Mountain chapter. Jason Gensler, who wears a state-of-the-art artificial pancreas, is pictured at far right.

“It keeps you in your target range all the time – it’s incredible,” said Gensler, a professional research assistant at the Barbara Davis Center for Diabetes. “With this, you can relinquish control, and you have so much more time to do whatever you want. The relief of that stress and burden is obviously the thing I’m most grateful for.”

A room of grateful and optimistic people greeted Sen. Michael Bennet (D) and Robert Califf, MD, commissioner of the Food and Drug Administration (FDA), when they visited the Barbara Davis Center at the CU Anschutz Medical Campus on April 1. They also attended a roundtable discussion with members of the Colorado Bioscience Association and CU Anschutz faculty members.

Bennet convened the gathering as part of his years-long effort to highlight the importance of an FDA-approved artificial pancreas (AP) system. The senator invited Califf to CU Anschutz to hear directly from these families about the life-changing effects of this technology and compel Califf to prioritize the final stages of the AP.

Bennet and Califf were joined by David Maahs, MD, PhD, associate professor of pediatrics, and Marian Rewers, MD, PhD, professor of pediatrics and executive director of the Barbara Davis Center.

‘World-class facility’

Seven families who are affected by type 1 diabetes talked about their experiences with new devices, such as continuous glucose monitors (CGM), which when combined with an insulin pump and a computer program constitute an AP. They also expressed hopes for a cure to the disease that adds 1.4 million cases every year in the United States.

Gathering at Barbara Davis Center

Patients with type 1 diabetes are pictured with FDA Commissioner Robert Califf, MD, (fourth from left), Sen. Michael Bennet (fifth from left) and Robert Garelick, executive director of JDRF Rocky Mountain chapter (sixth from left) during Califf and Bennet’s visit to the Barbara Davis Center for Diabetes on April 1. Marian Rewers, MD, PhD, executive director of the Barbara Davis Center, is pictured third from right.

“The Barbara Davis Center is a world-class facility that helps people of any age who are diagnosed with type 1 diabetes,” said Bob Pailet, whose 23-year-old daughter, Molly, was diagnosed six years ago. Pailet, sitting with his wife, Cindy, added, “We’ll be thrilled when Molly is cured someday, but, in addition, America spends many billions of dollars a year in health care costs related to type 1 diabetes. So, from a citizenship standpoint, we’d like to see that burden go away, too.”

Bennet and Califf praised the families for participating in research at the Barbara Davis Center, which is funded primarily through grants from the National Institutes of Health (NIH) and the JDRF Diabetes Foundation. JDFR, launched by parents of children with type 1 diabetes and run mostly by volunteers, has funded $2 billion of type 1 diabetes research worldwide, including at the Barbara Davis Center, since its founding.

Califf said progress toward successful interventions, prevention and a potential cure is made possible when type 1 diabetes families participate in studies. “You are all pioneers for a whole bunch of people who are going to come along behind you and benefit from the work you are doing,” he said.

Maahs is involved in multiple studies taking place at the Barbara Davis Center. Devices such as the artificial pancreas worn by Gensler – a model that the manufacturer anticipates will receive FDA approval and enter the market in spring 2017 – will continue to develop over time and give people with type 1 diabetes more choices. “The technology is going to go in a step-like fashion, and we’re probably going to be working on refining these over the next couple decades,” he said.

‘They’re going to help patients’

Type 1 diabetes patient Tiana Cooks at CU Anschutz

Tiana Cooks (third from left) explains how type 1 diabetes has made her a stronger person, during the visit by Sen. Michael Bennet and FDA Commissioner Robert Califf, MD. Cooks said, “I had to figure out that God has another plan for me … I’ve just really had to take a positive view of my life.”

The researchers and JDRF officials greatly appreciated the visit by the FDA commissioner and Bennet, as Congress is instrumental to NIH funding. In 2012, Bennet convened a similar meeting to highlight the lack of options available for kids with diabetes. The gathering helped prompt the FDA to release guidance so researchers and companies could determine how to develop an AP system. Four years later, some of the same families explained the significance of the progress so far, and the exponential effects a full AP system can have on their lives.

The FDA is vital in the process of getting new, patient-aiding devices approved, Maahs said. “They play an important role in terms of safety, and they’re very collaborative with industry – we all work together,” he said. “It’s very clear, with these types of research studies, how they’re going to help patients.”

Type 1 diabetes cases are dramatically increasing – another aspect that is being studied. Rewers said the number of people diagnosed with the disease doubles every 20 years. The good news is, he said, thanks to new treatments and the way the disease is managed, their life expectancy is the same as people without type 1 diabetes.

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Anschutz: City of Health

These articles originally were published in a 48-page special section of the Denver Business Journal, March 25-31, 2016. Together, they provide unique insight into the world-class health care and innovation that are the hallmarks of CU Anschutz, one of the nation’s foremost medical complexes.

Click here to see the entire special edition of the Denver Business Journal. 

 

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Journey to space began at CU

Kjell Lindgren, MD ’02, has wanted to be an astronaut as long as he can remember. That dream became a reality in July 2015 when he blasted off from Kazakhstan in July as part of NASA’s Expedition 44/Expedition 45 to the International Space Station (ISS). During his 141 day mission, Lindgren completed two space walks and conducted experiments in physics, life sciences and fuel combustion.

Kjell Lindgren on International Space Station

Alumnus Kjell Lindgren spent 141 days on the International Space Station, a mission that included two space walks and a variety of research. (Photo courtesy of NASA)

“That was one short amazing leg of a really extraordinary journey,” Lindgren told a group of students during a visit to CU Anschutz in March. ”I spent a good deal of my journey at CU. That journey took me to NASA for two and a half years of training to be an astronaut, with two years of mission specific training for this mission, and then to Kazakhstan for launch.”

Changing the map

Lindgren’s journey to space has been decades in the making. However becoming a doctor was not originally a part of his plan.

Fascinated with space, Lindgren had read “The Right Stuff” and Chuck Yeager’s biography—using those books to create a map he could use to become an astronaut. That map told him he needed to become a test pilot. At age 11 he sent off for materials to apply for the Air Force Academy. He never got a response, but that did not deter Lindgren from his dream.

Lindgren continued to follow his map. He was eventually accepted into the Air Force Academy and was awarded a pilot slot, which Lindgren deferred to study at Colorado State University. After returning for pilot training, Lindgren, who describes his journey in terms of peaks and valleys, was diagnosed with a medical condition that not only washed him out of pilot training, but also the Air Force.

Kjell Lindgren gives child a NASA patch

After his return to Earth, Lindgren met with students on the Anschutz Medical Campus to talk about his journey. He presented one attendee with a NASA patch.

“That was pretty significant valley,” Lindgren said. “I wallowed in that for a little bit, but then I reworked my map and began climbing out of that valley.”

Lindgren’s new map brought him to the University of Colorado, where he earned his MD in 2002.

“I had the great fortune to get study here at CU,” Lindgren said. “I am profoundly grateful to be back on the CU campus. This is where I did my medical training. It was a significant and very important part of my career. It feels like I am coming full circle to be back here today talking about this incredible journey.”

Time at CU

Lindgren spoke with students about his own experience at CU, recalling long nights memorizing the names of bones, muscles and nerves for Gross Anatomy. He and his peers would sit in a classroom with a skeleton going from top to bottom, over and over, naming everything until they had memorized it to perfection.

“Whatever you’re doing you have to be a nerd in it, so we became anatomy nerds,” Lindgren said. “You have to bring it.”

It was not just Lindgren’s incredible work ethic that saw him through his medical training. He also employed outside-the-box methods to succeed. To ensure he would do well on a test identifying anatomy of cadavers, Lindgren analyzed answers from tests given in previous years into a histogram and frequency distribution, allowing him to see the answers most frequently sought on exams.

The work yet again paid off. Lindgren’s unorthodox test preparation showed that the thoracic duct appeared on most of the practicals. During the test, when he saw a pin placed in an unknown area of the cadaver, he made the assumption that it must be the thoracic duct. He was right.

“Work hard and enjoy your life along the way,” Lindgren said. “I’m grateful for my path. Even though I slipped into several valleys I was always able to climb my way out.”

Lindgren went on to become board certified in emergency medicine and aerospace medicine, before he was selected by NASA in 2009 to become an astronaut. To become one of the nine selected for training, Lindgren rose to top of a pool of 3,565 initial applicants—of which only 113 received an interview and only 48 became finalists.

‘An indescribable experience’

While Lindgren’s medical training helped him stand out among other applicants, his primary role during the mission was not as a physician. According to Lindgren, a physician is not always included on every flight as all astronauts are trained across all equipment, duties and responsibilities.

“Whether you are a test pilot, infectious disease researcher or a physician, we all get trained the same level on all of the equipment,” Lindgren said. “We can all repair equipment, do a spacewalk and respond to emergencies.”

Lindgren assisted in a variety of studies while aboard the ISS. Some of the research conducted included understanding how flames propagate and how fuel moves within a tank in space. He and his fellow astronauts also grew and ate lettuce—becoming the first astronauts to grow and consume a crop in space.

Perhaps the most significant moments for Lindgren were spent during his two spacewalks, each of which lasted more than seven hours.

“The first time you stick your head out of the hatch and see the full face of the Earth spinning below you, occupying your whole field of view, it is an indescribable experience,” Lindgren said. You gain a profound understanding when you’re out in space that it is just your little space suit and miniature space ship that is protecting you from the harsh conditions. If you get in trouble, it is just you and your buddy to figure it out.”

Achieving his dream of becoming an astronaut has not left Lindgren without purpose. Since returning to Earth, he has been speaking with the public about his experiences in space and is looking forward to analyzing data from his experiments in space and helping to train the next group of astronauts. Lindgren is open to a return trip to the ISS, but in the meantime is enjoying discussing his journey.

“There is no one path to becoming an astronaut,” Lindgren said. “That’s demonstrated in my career. Find a place where you are passionate and work to get to the top of your field. If you study what you think NASA wants you to study and you don’t like it, you won’t succeed. Choose what you have a passion for.”

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Everyday Colorado online health survey tool launches statewide

trees

Students at the Colorado School of Public Health are launching an interactive, online community engagement tool April 4 during National Public Health Week called Everyday Colorado.

Everyday Colorado is investigating the intersection of the environment, public health and community development. The public engagement tool aims to generate knowledge from communities around the state about local environmental concerns, values, experiences and successes. It’s a statewide initiative involving the Colorado School of Public Health, Colorado State University, Tri-County Health Department and public health professionals throughout Colorado.

Tom Butts, project co-director and Deputy Director of Tri-County Health Department, said: “The success of this project relies on people sharing their stories with us to inform how we do business. We want to know about the everyday concerns and priorities of people in the diverse communities of Colorado, from Denver to Silverton to Sterling and everywhere in between.”

The project explores both the everyday and emerging environmental health issues across Colorado’s varied and changing landscapes. Professor Jill Litt teaches Environmental Health Policy & Practice at the Colorado School of Public Health at the University of Colorado Anschutz Medical Campus and is a project co-director.

“Student involvement, through community engagement and developing content about environmental policies and action steps, is a critical component of this community-based learning project,” Litt said.

Jennifer Peel of the Colorado School of Public Health at Colorado State University and co-director of this project, said: “The ‘Everyday Colorado interactive online tool asks participants to identify values and rank concerns and offers the opportunity to learn more about emerging issues that may affect the health and well-being of Colorado communities.”

After obtaining stories from Colorado residents that are shared online, Everyday Colorado will publish a comprehensive results report later this year, highlighting local and professional perspectives about Coloradans’ values and necessary action steps to prepare the state for emerging challenges.

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National Public Health Week

NPHW

To recognize National Public Health Week, students at the Colorado School of Public Health have organized events at the University of Colorado Anschutz Medical Campus so that everyone can engage in and support key public health issues.

During the first full week of April each year, the American Public Health Association brings communities together across the United States to recognize the contributions of public health and highlight issues that are important to improving our nation.

Here is a listing of events held at CU Anschutz:

Saturday, April 2, 2016:

 

Monday, April 4, 2016: 

 

Tuesday, April 5, 2016: 

 

Wednesday, April 6, 2016:

 

Thursday, April 7, 2016:

 

Friday, April 8, 2016:

 

 Sunday, April 10, 2016:

 

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