One of the most important things about the information gained from the studies, says Dr. Bingham, is that it opens up the conversation between physicians and patients. “Patients recognized they hadn’t always related changes in how they were feeling to their RA, and physicians found the information helped them understand how well patients were doing overall and even pick up [on] early flares,” says Dr. Bingham.
For Dr. El Miedany, one of the challenges of implementing this new metric and patient-centered approach in the clinical setting will be incorporating the patient-reported outcome measure questionnaires into standard clinical practice.
However, he stresses that having patients complete a questionnaire as part of the infrastructure of usual care, similar to routine monitoring of predictors of premature mortality, such as blood pressure or cholesterol in cardiovascular disease, will help patients prepare for their visit and improve communication between the doctor and patient.
Dr. Bingham noted that PROMIS measures are being embedded within many large electronic health records (EHR) systems. Providers can potentially have the system generate e-mails prompting patients to complete selected PROMIS measures between visits via a patient portal. The results are automatically entered into the EHR. “I think this ability to track how patients are feeling between visits will be incorporated into how we provide care in the future,” he says.
The question becomes, ‘Are we managing people as well as we can, or do we need to think about also measuring other key symptoms that really affect how people feel & function?’ —Clifton O. Bingham, III, MD
Another way patients can track their symptoms over time and report this information to their rheumatologists is through a site called Arthritis Power, the first patient-led, patient-generated and patient-centered research registry for arthritis.10 All the information patients enter about their health, including sleep, pain, flares or emotional health is tracked and stored in the registry.
Ben Nowell, PhD, a co-investigator of Arthritis Power, says it’s designed to allow patients to track their personal health while also making it easy for them to participate in research projects. Dr. Nowell is also director of patient-centered research at CreakyJoints, an online nonprofit, patient-supported community.11
“When it comes time for a patient’s next appointment, he or she can e-mail their doctor this information directly from the application in advance,” says Dr. Nowell, an advisory board member for some of the projects led by Drs. Bingham and Bartlett. “Therefore, the conversation the patient and doctor have in the office may be driven by data and not reliant on a patient’s memory or a doctor eliciting for symptoms.”