If you want to get in touch with a teenager, texting is the way to go. DYK (stands for “Did you know” in text slang), the Pew Research Center reported that 90 percent of teens with phones exchange texts, sending and receiving about 30 texts per day?
As part of their strategic visions, the medical and research communities at The Children’s Hospital of Philadelphia want to know how they can effectively capitalize on texting and other new avenues of communication with their young patients through mobile health (mHealth) initiatives. mHealth, also referred to as connected health, is the generation, aggregation, and dissemination of health information via mobile and wireless devices and the sharing of that information between patients and providers, according to the Healthcare Information and Management Systems Society.
“mHealth is a new paradigm of research in a lot of ways,” said Nadia Dowshen, MD, an adolescent medicine specialist at CHOP and an assistant professor of pediatrics at the Perelman School of Medicine at the University of Pennsylvania.
Dr. Dowshen is a co-chair of a new mHealth Research Affinity Group launched in January within the CHOP Research Institute. Two more co-chairs — Lisa Schwartz, PhD, behavioral science, and Linda Fleisher, PhD, MPH, health communications — bring a multidisciplinary perspective to the mHealth Research Affinity Group’s leadership team.
They are eager to bring together researchers and staff who are interested in exploring the ever-expanding array of technologies being used for mHealth, from basic text messages, apps and social media; to more complex wearable devices that link to electronic health records; to futuristic ideas such as implantable and ingestible devices. The new mHealth Research Affinity Group (mRAG) will provide a forum for researchers to meet and collaborate with other researchers who are interested in conducting mHealth projects.
“The mHealth Research Affinity Group will get the key players and stakeholders together to compare notes, experiences, and expertise to determine how we can best move mHealth research forward at CHOP,” Dr. Schwartz said.
About four years ago, Dr. Schwartz, a psychologist who works with children with cancer and their families at CHOP's Cancer Center and an assistant professor of pediatrics at the Perelman School of Medicine at the University of Pennsylvania, embarked on a Chair’s Initiative to test a mHealth texting intervention. Chair’s Initiatives are special projects supported by internal grants through CHOP’s Department of Pediatrics to tackle new models of care.
Dr. Schwartz aimed to see if texting could help adolescents and young adults coming off treatment for cancer to stay engaged in follow-up care and adjust back to life after cancer. Results from the randomized controlled trial showed that the intervention was feasible and patients’ responded favorably, but just as importantly, Dr. Schwartz discovered some of the challenging nuances of conducting mHealth research.
For example, she partnered with an outside vendor to build the platform and two-way text messaging features that her intervention required. Then she needed to see if business agreements were needed, sort out patient privacy issues, and figure out how to manage and analyze such a large amount of usage data. Dr. Dowshen encountered the same type of logistical concerns and learning curve when she designed a mHealth trial to improve adolescents’ adherence to antiretroviral medication using two-way text-messaging and an app with interactive features.
“All of those things take a tremendous amount of time and support,” Dr. Dowshen said. “A lot of us who were doing mHealth research were just slogging through on our own trying to figure out how to do this. When we all came together through the Chair’s Initiative mHealth Working Group, we were able to share how we did things. We thought it would be great to have a resource for everybody.”
Indeed, a survey conducted by the mHealth Working Group revealed that almost 50 percent of the 173 CHOP researchers who responded were interested in learning more about mHealth, and almost 35 percent were currently conducting mHealth research or quality improvement projects. Those already involved in mHealth research said they would welcome support in the areas of in-house development, information systems, and vetting commercial and academic partners.
At the same time, research funding opportunities for mHealth have begun to emerge, noted Dr. Fleisher, who is a senior scientist for the Center for Injury Research and Prevention at CHOP. Dr. Fleisher had developed numerous consumer mHealth tools and is currently leading a Chair’s Initiative with CHOP pediatrician Alex Fiks, MD, MSCE. This initiative, called Integrating Apps in Pediatric Practice (IAPP), is establishing and coordinating efforts to refine a process to develop and integrate consumer facing mHealth tools into practice. They are focused on questions such as: “How do you begin to make those decisions about what technologies and what specific mHealth tools should get integrated into practice?”
An important aspect of mHealth, the three co-chairs pointed out, is that mobile technology is constantly changing. The mHealth Research Affinity Group members will help each other keep pace with this fast-moving field to ensure that their research activities remain relevant and are aligned with the latest mHealth trends.
Also, mHealth gives researchers opportunities to understand human health and behavior in more detailed ways, but the amount and type of data that it generates will require bioinformatics specialists who can relate their knowledge of mHealth data management and analysis.
For example, Dr. Dowshen’s study of two-way text messaging that took place over six months with 25 participants kept track of every text sent and received which generated thousands of data points. Other studies have used electronic signals from pill boxes or bottles to record adherence, but Dr. Dowshen found that her patients did not routinely use pill bottles or boxes to store their medication in order to protect their confidentiality. This type of data collection was feasible and acceptable for youth and allowed Dr. Dowshen to look at patterns of adolescents’ adherence to antiretroviral therapy in a way that previously would not have been possible.
While mHealth certainly has the potential to encourage patients to take more responsibility for their health and improve their quality of care, more evidence is needed to determine the best approaches for mHealth, from policy to implementation. Researchers will need to act quickly, as consumers’ expectations for mobile patient engagement continue to rise.
“Patients and families certainly want to use these new ways of communicating, but there is a lot of research to be done to understand how best to do that, who uses it, who doesn’t use it, and in what situations,” Dr. Fleisher said. “Although mHealth seems ubiquitous already, there is much we don’t know.”