Melanie Cozad, Ph.D., assistant professor and researcher at the University of South Carolina, has always been interested in the dynamics between patient and provider. After working with patients in the Prisma Health Upstate health care system, she developed an interest in rheumatoid arthritis and how to facilitate the patient and provider experience to improve outcomes. With a specialty in behavioral economics, Dr. Cozad’s research emphasis is human decision-making – specifically within the context of clinical appointments and how to improve patient communication with providers in order to increase patient satisfaction with their clinical experience.
For patients, managing a chronic condition can be challenging, frustrating and confusing. Roughly 1.3 million Americans live with rheumatoid arthritis a chronic inflammatory and autoimmune condition that can affect the joints and other body systems, often causing fatigue, joint soreness and changes in appetite. Getting an accurate and concrete diagnosis can be a painstaking process because symptoms of rheumatoid arthritis can closely mirror conditions such as lupus or osteoarthritis. Once they are correctly diagnosed, rheumatologists work on developing treatment plans to help them manage the symptoms.
Dr. Cozad connected with rheumatologist Gulzar Merchant, M.D., in 2016, at the suggestion of a co-worker, and their academic partnership led to the formation of a rheumatoid arthritis research team comprised of Dr. Cozad, Dr. Merchant and seven others. Their aim is to develop systems that encourage and facilitate increased patient involvement in the management of rheumatoid arthritis.
After securing their first grant from Pfizer Independent Grants for Learning and Change in 2017, Dr. Cozad and her team created a rheumatoid arthritis patient engagement team made up of individuals who suffer with the condition and are able to give insight into what it’s like to live with it, as well as input about how they would like to manage it. Through ongoing discussions, the patient engagement team suggested that an app could be used to help track, monitor and note items related to rheumatoid arthritis, including concerns, frequency and severity of symptoms and desired lifestyle goals or outcomes for treatment.
Many of the individuals on the patient engagement team noted that while they were regularly seen by their rheumatologist – or specialty care team – appointments were often spread out, and they experienced difficulty recalling the duration or frequency of their symptoms. Symptoms can change from month to month or week to week, so having a place where the severity of their disease can be tracked and their concerns can be documented would be beneficial. This direct patient feedback led to the creation of RunRA, one of the first applications of its type.
Currently in the prototype phase, the existing version of the RunRA app is only available for Android devices. A total of 75 participants across two research studies, including some members of the patient engagement team, have been given initial access to RunRA. In one of the studies, they are assessing the application’s effectiveness by staggering participants’ initial use of RunRA at different time intervals to determine its useability, helpfulness and overall effectiveness in promoting increased communication with the rheumatologist.
One of the main RunRA app features is a 15-item questionnaire that has users rank daily activities they can or cannot do, plus select their current rheumatoid arthritis pain level. The questionnaire generates a final score that is used as a baseline to assess progress or setbacks over the course of weeks or months. Another feature is the ability to select and change desired goals for living. Some individuals with rheumatoid arthritis have specific lifestyle goals they would like to achieve – such as tying their shoes or being able to play with their children or grandchildren – and the app allows the user to set or change personalized goals based on progress through their treatment plans.
Additionally, RunRA allows patients to prioritize symptoms they would like addressed by their rheumatologist. These are important features because they allow patients to take a more direct role in the management of their rheumatoid arthritis and feel empowered to voice feedback, opinions and concerns about existing care and how best to move forward with ongoing or new treatment and management.
Pam Evans, a member of the patient engagement team, was involved in the development of the RunRA app. She shared the importance of patients feeling a sense of empowerment to voice their opinions about their care. A patient herself, she wanted the confidence and ability to clearly articulate to her provider concerns and issues related to her symptoms and possible treatment approaches.
Future plans for RunRA include the introduction of an additional feature that will allow patients to give feedback on the quality and duration of their sleep. To assist in the monitoring of sleep, Dr. Cozad envisions the ability to link the app to a user’s smartwatch or fitness tracker and eventually be able to link the app to electronic medical record systems, making information recorded by the patient more accessible for the rheumatologist.
The idea of using a mobile application to increase communication, compliance and even caretaker engagement is growing and can be geared toward other chronic illnesses or diseases. The rheumatoid arthritis research team has already applied for a grant and is hopeful about applying the existing framework to design a similar app that would track symptoms and treatments for metastatic breast cancer.
The rheumatoid arthritis research team is currently recruiting patients with Android phones. Participants are from South Carolina, the Charlotte/Raleigh/Durham areas, the Atlanta area and portions of Tennessee and Florida. Any individual interested in participating in the study should reach out to Anna Nourse, project coordinator, at [email protected]
By Fay Boudet