For the past 16 years, the website, creakyjoints.org, founded by arthritis patient Seth Ginsberg and social entrepreneur Louis Tharp, has offered arthritis patients and their families a safe online community where they can receive meaningful support and education. In March, the online portal added a new initiative—Arthritis Power, the first-ever patient-led, patient-generated, app-based research registry for arthritis, bone and inflammatory skin conditions. Using Arthritis Power, patients can track their symptoms, treatments, medications and health data using their computers or smart- phone (iPhone and Android). By partnering with rheumatology researchers at the University of Alabama at Birmingham and with support from the Patient-Centered Outcomes Research Institute (PCORI), Arthritis Power hopes to enhance informed healthcare decision making by assessing patient-recorded outcomes (PROs).
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Explore This IssueOctober 2015
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In recent years, there has been a growing interest in the assessment of patients with arthritis from the patient’s perspective. PROs have been expanding across clinical care settings to document the progression and fluctuation of a patient’s disease and help patients record their symptoms between doctor’s appointments. PROs complement such measures as lab data and swollen joint counts, resulting in office visits that are more efficient and effective.
A series of clinical studies released in May by Cardinal Health Specialty Solutions emphasized the important role that PROs play in advancing patient-centered care. One study used PROs to demonstrate that rheumatologists significantly underestimated the impact of RA disease burden and treatment on their patients’ sense of well-being. The study went on to report that understanding this disparity in perceptions can help doctors to make effective treatment decisions that lessen the burden on patients and, in some cases, also reduce the cost of their care.
Both Patients & Providers Benefit
“Arthritis Power enables patients to regularly check their health and assess how they are doing over a specific period of time,” says Jeffrey Curtis, MD, MS, MPH, of the University of Alabama at Birmingham, Division of Clinical Immunology and Rheumatology, and a William J. Koopman Endowed Professor in Rheumatology and Immunology. “Arthritis Power measures sub- tle changes that can occur if a medication is altered and can also address concerns that go beyond pain and function.”
Using the Arthritis Power app, patients and their doctors can see whether their symptoms are changing or holding steady over time, monitor how they are respond- ing to medications, and view their health reports in daily, weekly or monthly snap- shots. Patients can then e-mail secure reports to themselves or their doctors.
Dr. Curtis notes that although there are 52 million Americans in the U.S. with arthritis, ongoing clinical research still doesn’t address many of the questions that are important to both arthritis patients and their doctors, including related symptoms, such as fatigue, anxiety and depression.
“Physicians have a limited amount of time to spend with their patients,” Dr. Curtis says. “Armed with the data provided by Arthritis Power, doctors can work with their patients to determine if a specific medication or treatment plan is working or whether it needs to be altered.” Dr. Curtis also encourages rheumatologists to talk to their patients about using the free app and joining Arthritis Power. “Often, when patients search for information on the Internet, they find anecdotal information or articles that are sponsored by a pharmaceutical company,” Dr. Curtis says. “Arthritis Power is an education portal that offers credible and unbiased medical information.”
Over the next several months, the app will be adding content, such as how to manage pregnancy when a patient has RA. “The content we provide will cover patient information that can’t always be covered in a traditional office visit,” Dr. Curtis says. “If a woman with RA is contemplating pregnancy, the article will discuss what medications they might need to stop and offer information that will complement the advice their physician offers.”
The app also plans to offer content and CMEs for physicians on such topics as how registries can help complement information gaps. In the future, Dr. Curtis says the hope is that Arthritis Power may be able to gather data from a patient’s wearable fitness device (e.g., FitBit, Jawbone) to provide a clearer picture of a patient’s overall health. In addition, the Arthritis Power app allows researchers to collect data on an ongoing, long-term basis, and to help physicians and patients set treatment goals and track patient disease activity.
“During our pilot testing period, we saw how Arthritis Power created real value and usefulness for both physicians and patients,” Dr. Curtis says. “The app generates real outcomes that can empower patients to improve their own health outcomes.”
Rachelle Crow of Chesterfield, Mich., uses Arthritis Power at least once a week to track her RA symptoms.
Using the Arthritis Power app, patients and their doctors can see whether their symptoms are changing or holding steady over time, monitor how they are responding to medications, & view their health reports in daily, weekly or monthly snapshots.
“My favorite feature is the thoughtful assessment,” Crow says. “Rather than asking me to rate my pain on a scale of one to ten or using the Likert scale, which can be really confusing for most patients, it asks questions that are concrete and specific.”
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.
Linda Childers is a health writer located in the San Francisco Bay Area of Northern California.