One of the most powerful weapons against cystic fibrosis may be the smartphone
by Tim Bonfield
Erin Moore has served as an advisor to Genentech and the Robert Wood Johnson Foundation. She currently serves on a patient engagement committee of the Cystic Fibrosis Foundation and as a patient representative with the U.S. Food and Drug Administration.
Few people personify the power and potential of health care learning networks more than Erin Moore.
Five years ago, Moore and her husband Martin were the proud, excited parents of a growing family. They were raising a healthy 2-year-old girl named Ella, and the family had just expanded with the birth of their twins, Drew and Lily.
Shortly after the twins were born came the sobering news: testing confirmed that Drew had cystic fibrosis. From that moment, the course of Moore’s life began to transform from businesswoman and mother into full-time patient advocate. Now she is part of an effort at Cincinnati Children’s to build a collaborative chronic care network (C3N) to accelerate research and share best practices in cystic fibrosis treatment.
Moore’s influence upon cystic fibrosis care reaches to the national level. She chronicles her son’s CF journey in a blog called 66 Roses. She has been interviewed by U.S. News & World Report and was recently invited to the White House to attend a “Champions of Change” event. She has served as an advisor to Genentech and the Robert Wood Johnson Foundation. She currently serves on a patient engagement committee of the Cystic Fibrosis Foundation and as a patient representative with the U.S. Food and Drug Administration. Since 2013, Moore has been employed by Cincinnati Children’s as a family partner, where she works with the pulmonary care team to design social media engagement strategies for patients and caregivers.
“Right after Drew was diagnosed with CF, I immediately felt 100,000 different feelings,” Moore wrote in a 2010 blog post. “You’re scared because you don’t know what it is. You’re sad because your baby is sick. You’re guilty, knowing that this genetic disease was passed onto your baby through you, and you wish more than anything that you could take that away. But then you look at your beautiful little being and can’t help but be overwhelmed by love.”
Moore is a voracious learner and a dynamic builder; highly motivated, highly organized and ready to act. And like all strong mothers, she is utterly committed to the well-being of her son. Moore is exactly the type of parent who breathes life into the esoteric-sounding C3N concept.
Cincinnati Children’s has been a pioneer in developing learning networks that use social networking technology to bring scientists, physicians, parents and patients together in new ways. Members of these networks pool experimental data and real-world experiences to accelerate research, improve communication and spread best practices faster and farther than ever before.
Peter Margolis, MD, PhD, Director of research at the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s, was an instrumental force in launching the first major C3N — the ImproveCareNow network that focuses on Crohn’s disease and ulcerative colitis. Now Margolis is working with Moore, Michael Seid, PhD, Director of Health Outcomes and Quality of Care Research in the Division of Pulmonary Medicine, and several other colleagues at Cincinnati Children’s to apply the C3N concept to transforming cystic fibrosis care.
A NETWORK IS BORN
Caring for their son Drew is a non-stop duty for the Moore family, but improving treatments and staying in constant contact with their care team has allowed Drew to enjoy a normal, active life with his siblings.
Moore was among the early advocates who pushed to begin a C3N-style network for CF, while she was serving as the state advocacy chair of the Cystic Fibrosis Foundation in Ohio. Her awareness of the approach began in 2012 after attending the North American Cystic Fibrosis Conference in Orlando.
“One of the key things I understood through that conference was that what’s missing in CF is a better understanding of what happens to patients between visits,” Moore says. “Well, I have that knowledge and so do the other 30,000 families who have kids with CF. So I started searching online for more information. That’s where I read about Dr. Seid and learned more about this chronic care model, and I thought, ‘This is what we need. This is what they were talking about at that conference. Why don’t we have this?’”
Moore convinced CF Foundation leaders to visit Cincinnati to learn first-hand about work led by Margolis and Seid. They were impressed. Now, Cincinnati Children’s, the CF Foundation and the Dartmouth Institute (a long-time adviser to the foundation) are collaborating to build the “CF Care Model of the Future.” Initial design meetings were held in January and May.
“Through this process we’re building a new system. We’re building a new way to work together,” Moore says. “The model is connecting a vast network of microexperts who are coming together to create something bigger than any one of us can create alone.”
Ideas for the care model include new emphasis on self-tracking metrics, home health care and telemedicine, shared decision making, even creating a centralized IRB for multicenter CF research. As the work progresses, Cincinnati Children’s and other accredited CF care centers plan to launch pilot projects to evaluate new approaches.
“A lot of this is coming from families pushing ideas,” Moore says. “Families are saying, ‘We demand better. We need this. We need you to work with us.’”
CONDUCTING CARE WITH A SMARTPHONE
Erin Moore uses an app called Orchestra, under development at Cincinnati Children’s, to submit and track data about Drew’s condition. Daily data entry requires just seconds to complete and unusual blips can be automatically flagged.
One part of the new care model could include a new mobile application (app) under development by a team of researchers at Cincinnati Children’s and the California-based Vital Labs Inc. They are designing and testing a symptom tracking and communication tool called Orchestra to improve interactions between families and clinicians. Moore is one of the early adopters.
The tool can be used on tablets, desktops and smartphones. It allows Moore to constantly feed data about Drew’s health status to his care team. Every day, the app automatically sends out questions seeking information about symptoms, medication usage, nutrition and other topics. Families respond with just a few keystrokes. “It takes about 40 seconds a day to respond to the prompts,” Moore says.
New data points get plotted instantly into tracking charts, and if desired, the app can alert clinicians to abnormal trends. The app’s design team — Lisa Opipari-Arrigan, PhD, and Heather Kaplan, MD, at Cincinnati Children’s and Ian Eslick, PhD, at Vital Labs — explained the app during a webinar recorded in April 2015.
In a typical chronic care scenario, families meet with clinicians for about 20 minutes per visit, three or four times a year. Everything else about the patient’s health experience occurs in the weeks and months between. However, information about what happened during those time spans usually gets relayed to clinicians in unobjective, incomplete fashion, all colored by the limitations of memory.
Orchestra can help fill in the gaps, the designers say. When families use the tracking app, patients and parents come to the clinic visit armed with much more comprehensive data, which makes the limited time they share with doctors more meaningful and effective.
“The platform enables patients and providers to be equal partners, co-producing health and health care together,” Opipari-Arrigan says.
Moore says the system empowers families. She recalls a situation when Drew was 4 and he started coughing more frequently during a family vacation. Doctors in the local hospital’s emergency room wanted to admit Drew for a 10-day course of antibiotics. However, Moore could see from the data she had been gathering that Drew was not acting like he had during previous infection-related exacerbations. She doubted that antibiotics would help. Her information was solid enough that she convinced the doctors to administer a steroid instead, and Drew was back to normal within a day.
“Doctors are coming to realize that I have more knowledge about Drew than anybody else. I’m with him every day,” Moore says. “Now our clinicians engage with me where I’m at, not where they’re at.”
A BRIGHTER FUTURE
These days, Drew is doing well. He started kindergarten this year and loves to romp around with his older sister Ella, twin sister Lily, and younger brother, Jake.
Drew is the only one of the children with CF; the others are carriers. Three times a day, 30 minutes per session, Drew wears a vibrating vest to help clear mucus from his lungs while breathing medicated mist through a nebulizer. The rest of his medications fill a kitchen cabinet.
“I credit a lot of Drew’s health to the pulmonary team at Cincinnati Children’s. They have been terrific,” Moore says. “But I also credit a lot of it to the advocacy, engagement and empowerment that I have. It really has been a partnership.”
Moore plans to continue putting the Orchestra app through its paces and to continue advocating for family empowerment and engagement. She sees a huge role for social networking as the CF Care Model of the Future embraces personalized medicine.
Moore points to her smartphone and says, “This will transform health care.”