It can also be frustrating for physicians managing the disorder, especially in trying to gather six months of information in a brief office visit. The symptoms that often trouble patients most—fatigue, pain, sleep disruption, depression and limitation of activities during flares —don’t necessarily show up in objective clinical tests. The day of the appointment may not be a typical day, and memories of flares a few weeks ago may have faded. Without a clear sense of how a patient is doing and how that correlates with treatment, deciding what to do next is no simple matter.
But what if you could see at a glance a graph of the last six months that overlays symptoms, medications and other treatments plus other factors that may provide clues to what makes a patient’s condition better or worse? How do you get that kind of information? Leverage the power of one of the most common icons of the information age—the mobile phone, and an app designed to gather information on chronic diseases.
The app is called Arthritis Power, and it was designed here in Birmingham at UAB. Created with support from the Patient Centered Outcomes and Research Institute (PCORI) it was deployed through the Global Healthy Living Foundation’s online arthritis community, Creakybones.org.
“We wanted to make it valuable to the end user so they can choose and track what is important to them,” James H. Willig, MD, MSPH, said. “They can track their pain levels with the frequency they choose, keep a list of medications, and record the quality of their sleep, activity and overlay graphs to see if there is a relationship between them.”
As senior designer, Willig’s role on the UAB development team was focusing on the big picture and what the app should be able to accomplish. His interest in the use of technology in medicine began with data capture in working with HIV patients. He has since added board certification in medical informatics to his specialty in infectious diseases.
“This is an effort where collaboration can make such a difference,” Willig said. “Multiple perspectives come together to spark ideas and create multiple functions. Our team included rheumatologist Jeffrey Curtis MD; Bernadette Johnson; our UAB programmers Cooper Filby, Alfredo Guzman, and Matthew Auriemma; and for specialized IT help, we were able to call on Jonathan Cortis and Clayton Rice of CTS in Birmingham.
Willig said the functions in the app should be helpful in tracking most types of chronic disease. It was designed with a modular structure so it could be easily adapted.
“There are four basic pillars in the design. The first is self-tracking that puts patients in charge of what they want to follow. The second is patient control. Their information is directly accessible to them rather than being in a medical record somewhere else. The third pillar is education, with information and links to other resources. The fourth is the opportunity to fight back against the disease. They can put their tracking data to work helping with research through the Patient Powered Research Network and PCORI.”
Arthritis Power is available through app stores for Android and Apple phones, and it is online at arthritispower.creakyjoints.org. Registering to use the app the first time may be easier online using a keyboard, especially for patients who would like for their data to be used in research.
The response from patients and new users has been positive.
“Patients are taking their phone data to their doctors so they can show them what’s happening. It’s a very different conversation. They also find it convenient to take with them if they have an appointment with someone new,”Willig said.
“Some users send us ideas for functions they would like to see. We hope to soon be adding a medication reminder, and in the future we would like to add the ability to track location and what is happening in the environment.”
Being able to look for patterns may provide clues to helping patients with chronic diseases have more good days. It might even help them anticipate and prevent flares. By putting more control in their hands, it also gives them a new way to fight back.
