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It really may take a village – a high-tech virtual village – to beat chronic childhood diseases.
That is what researchers at Cincinnati Children’s are demonstrating as they lead far-reaching multicenter, multi-disciplinary projects to improve care for children with inflammatory bowel disease (IBD). They are using advances in telemedicine, social media, large-scale databases, and more to build ways of sharing discoveries and best practices faster and farther than ever before.
“These complex chronic conditions are beyond the skills of any one scientist, or any single institution, to solve. We need to harness the collective intelligence of large communities of clinicians, scientists and patients,” says Peter Margolis, MD, PhD, (at left) research director of the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s.
“Patients may be the most underutilized resource in transforming care. They have tremendous insights into areas of uncertainty and many have expertise that they are willing to offer. For example, they can also be experts in computer technology, biomedical engineering, communications, business and so on,” Margolis says. “Open-science, network-based approaches allow a disease network to tap into worldwide expertise in ways that were never possible before.”
Crohn’s disease and ulcerative colitis are the two main diseases in a larger category of conditions called inflammatory bowel disease (IBD).
Crohn’s disease causes inflammation of the gastrointestinal (GI) tract, most commonly affecting the small intestine and colon. Ulcerative colitis produces open sores, typically beginning in the rectal area but potentially involving portions of the entire large intestine.
About 1.4 million Americans, including 50,000 to 75,000 children, have IBD. Both Crohn’s and ulcerative colitis tend to strike teens and younger adults. Most cases of Crohn’s disease occur between ages 15 and 30, and peak onset for ulcerative colitis is between 15 and 25.
Cincinnati Children’s has played a central role in supporting the work of the ImproveCareNow network of pediatric gastroenterologists. It also serves as the hub of the Collaborative Chronic Care Network (C3N), which includes patients, the nonprofit Lybba design and communications group, the University of Chicago’s Booth School of Business, the MIT Center for Collective Intelligence, Media Lab, and several other collaborators.
The project is building an enhanced IBD patient registry to share research data on a large scale. It also is forming widespread online communities of doctors, nurses, patients and parents to speed the sharing of treatment advances.
Currently with more than 6,000 patients, the network will grow to more than 10,000 patients and 300 physicians at 35 medical centers by mid-2012, Margolis says.
Margolis predicts the C3N project will serve as a model for improving care for many chronic diseases.
In fact, the open information sharing approach already has produced unexpected dividends.
“We were recently working on applications for three new grants involving patient participation in care. We were looking for a teen patient with computer expertise to join the team. So one of our patient colleagues put a post on her Facebook site,” Margolis says. “Within hours, a phenomenally brilliant 16-year-old college graduate student had responded. Without social media, we would never have found somebody like that. We wouldn’t have known where to begin to look.”
Even though the project is still new, members have documented massive practice variation in treating Crohn’s disease.
Two types of medication dominate advanced treatment for Crohn’s disease: infliximab (Remicade), a fast-acting drug infusion that can help patients who do not respond to corticosteroids or other oral immuno-modulators; and thiopurine drugs (Azathioprine and 6-MP), which also are used when patients with severe IBD do not respond to corticosteroids.
Infliximab costs about five times more than thiopurine medications, Margolis says. Yet medical centers in the C3N network vary widely in their preferences. At one center, 40 percent of patients received infliximab versus 30 percent getting thiopurine drugs. At another center, 10 percent were using infliximab while nearly 50 percent were using thiopurine medications.
Just seeing the variation will push medical centers toward more common standards of care and to conduct more research to examine which treatments work best for whom.
“By developing networks, there’s a better chance that the most important aspects of care will be consistent whether you are being treated in Pittsburgh, Cincinnati or Alaska,” Margolis says.
People with IBD live in big cities, small towns and far-flung rural areas. Yet the nation’s top experts are clustered among a handful of medical centers.
“Successful treatment for IBD depends on fairly frequent contact with skilled health care professionals,” says Kevin Hommel, PhD, a researcher with the Center for Adherence and Self-Management.
“With half of our patient population living at least 20 miles or more than a half-hour drive from our medical center, distance can become an obstacle to good care management,” Hommel says. “However, we also know that about 85 percent of children and adolescents access the Internet.”
In 2010, a 14-patient pilot study by Hommel indicated that individually tailored behavioral treatment can improve adherence to medication by an average of 25 percent. However, patients and families reported that weekly trips to the hospital were inconvenient. In response, Hommel’s team tested the same treatment protocol via “virtual face-to-face” sessions using Skype and demonstrated similar improvement in adherence.
Kim Pearson, who lives in a suburb north of Cincinnati, says the program helped the whole family. She and her 16-year-old daughter, Laura, are living with Crohn’s disease.
“The program taught us problem-solving skills and gave us a big picture understanding of why it’s so important to keep taking your medications, even if you are feeling better,” Mrs. Pearson says. “Using Skype saved us the hassle of making the trip, paying for gas and finding parking. And I think using Skype really appealed to Laura. It was an up-to-date way to communicate.”
Now Hommel is using a $2.8 million grant from the National Institute of Child Health and Human Development (NICHD) to work with three other medical centers to extend this telehealth research to 194 more families in Ohio, Pennsylvania and Connecticut.
“Working with multiple centers provides access to a larger, more diverse range of patients,” Hommel says. “That adds external validity to the results. Also, for this particular study involving multiple centers is critical to testing the long-distance treatment model.”
IBD patients with adherence problems can live anywhere. Cincinnati Children’s is one of very few medical centers with expertise in overcoming adherence problems. Telemedicine makes the world smaller, Hommel says.
“Instead of reaching just the patients within easy driving distance of Cincinnati, we can reach out across hundreds and thousands of miles,” Hommel says. “As long as the family has a computer with Internet access, we can provide the web cam needed to make the visual connection. If people do not have a home computer, we can work through their local library. The most important issue is that patients get their self-management needs met."
The world of medical research has barely begun tapping into the vast potential of collaborative networks of practices, patients and researchers, says Peter Margolis, MD, a researcher with the James M. Anderson Center for Health System Excellence at Cincinnati Children’s.
Although there is a growing trend in medical science to work across clinical sites to build disease registries and manage large clinical trials, Margolis envisions the future of networks going far beyond that.
Thanks to an explosion in social media technology, new kinds of virtual communities are emerging to transform the medical experience for scientists, clinicians, patients and their families.
Margolis leads the Clinical Collaborative Care Network (C3N) project at Cincinnati Children’s with Michael Seid, PhD. The project focuses on open-science approaches to improving care for young people with inflammatory bowel disease (IBD). He hopes it will serve as a model for treating other chronic conditions.
“Chronic illness kills too many and costs too much,” Margolis wrote in the federal grant application for the project. “What if there was a way to create a vastly better chronic illness care system by harnessing the inherent motivation and collective intelligence of patients and clinicians?”
The grant itself was unusual. The project was among the first round of 42 projects nationwide to receive “Transformative R-01” grants from the National Institutes of Health. The NIH selected these projects specifically for their ability to challenge the status quo.
The C3N project “challenges the dominant chronic illness care paradigm, which views patients as objects on which to intervene,” Margolis says.
Unlike other, strictly medical collaborations, the partners on this project include experts in computer technology, social media, business and other skills. And unlike the focused goal of evaluating one or two medications, this project has multiple objectives that seek to address system-level issues.
For example, the project takes on the thorny issue of performing “open science” research in a highly competitive scientific culture. It addresses the conflicts between encouraging online communication between patients and clinicians and respecting patient privacy obligations.
Margolis says people like Andrew Grove, the former CEO of Intel Corp, have influenced his thinking. In an editorial published Sept. 23, 2011, in the journal Science, Grove called upon medical leaders to rethink the entire concept of clinical trials to achieve more personalized recommendations.
Innovative companies like Amazon.com already use artificial intelligence tools to comb through massive databases of consumer information. They recognize what people purchase and recommend lists of other things that will likely interest that consumer.
“Imagine if clinicians and patients could receive more tailored recommendations for care based on better use of these large databases,” Margolis says.
As more medical records become electronic, opportunities for innovation explode. In the world of fitness and nutrition, people already can buy a growing array of mini monitors.
The watch-like “Basis” wrist sensor allows users to track their pulse, motion, temperature and sweat levels. Meanwhile, the “Up” wrist sensor and iPhone application, made by Jawbone, can track sleep patterns, sense exercise movements, and sync the number of calories burned with food data entered by the user. Users also can use their iPhones to connect to online sources for expert tips and encouragement.
“Now do that with specific diseases,” Margolis says. “Imagine having a smart phone that can talk to a monitoring device and tell you things are going wrong based on behavioral changes before you actually feel sick. The C3N project is working with Ginger.io on such an application. The very nature of the conversation you have with a doctor would change.”
As the C3N project studies ways to use social media platforms to help young patients stick to their treatment regimens, Margolis says no one can accurately predict how far or how fast changes might occur. But given the rapid growth in the use of smart phones and related technology, there is little doubt that big changes will be coming soon.
To learn more about C3N, visit the project’s website.
Peter Margolis, MD, PhD.
Kevin Hommel, PhD, is a researcher with the Center for Adherence and Self-Management.
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