Like many RA patients, Crow says it can be difficult to remember everything that transpired between appointments and to also note concerns that go beyond pain that she’d like to communicate with her physician.
“Often, when I speak with my physician, I find myself downplaying my symptoms, not to minimize them, but because I may have forgotten that I had a really hard time a month ago, and sometimes I’m also not honest with myself about how I feel,” Crow says. “Arthritis Power allows me to record how I am doing between appointments and then take a hard copy of my data to share with my physician at my next appointment.”
Ben Nowell, PhD, director, Patient- Centered Research, says patient data are collected from Arthritis Power through a secure process that will be used to help researchers better understand how different treatments work on different arthritis patients. “Patient-recorded outcomes allow us to measure the progress of a disease by asking patients how they are doing from one day to the next,” Dr. Nowell says. “When combined with a patient’s lab data, blood work, etc., they reveal a more accurate picture of how the patient’s arthritis is progressing and how well various treatments may be working.”
In addition, keeping track of activity, pain, sleep patterns, anxiety, etc. may help arthritis patients better manage their condition and, in the case of RA patients, help anticipate and prevent flares. The PROMIS fatigue instrument on Arthritis Power evaluates a range of self-reported symptoms, ranging from mild tiredness to overwhelming exhaustion. Dr. Nowell stresses that all arthritis patients are encouraged to join Arthritis Power, whether they have been newly diagnosed, are an arthritis veteran or are in remission. The app focuses on RA, psoriasis, psoriatic arthritis, as well as lupus, fibromyalgia and osteoporosis.
Providing Increased Research Opportunities
“Patient-centered research allows us to use big data to answer questions that are important to those living with arthritis,” Dr. Curtis says. Patients with rheumatoid or psoriatic arthritis typically learn about research opportunities and clinical trials from their physician, but the Internet has changed this, and now many patients seek information on clinical trials through search engines and support groups. Arthritis Power hopes to simplify the process for patients by offering a variety of clinical trial and research opportunities with content suitable for lay readers. Using this information, patients can then proactively decide when and how to participate in research. “The more people who join and share information about their symptoms and treatments, the more quickly we will be able to see what treatments work in general,” Dr. Curtis says.
