Investigators at the University of Alabama at Birmingham have teamed with the Global Healthy Living Foundation’s arthritis support community CreakyJoints.org to launch a study which will incorporate electronic devices to capture important information on conditions such as rheumatoid arthritis from patients and physicians.
The effort is funded by a $1 million award from the Patient-Centered Outcomes Research Institute.
The study will use electronic devices such as smartphones, laptops and tablet computers to collect data directly from patients and clinicians, a process called Patient Reported Outcome — or PRO. Patient-reported data can then be de-identified and used in aggregate to help investigators assess the efficacy of different treatment options.
“The idea is to facilitate the interaction between patients and their health care providers, gather pertinent information, and ultimately establish the most appropriate treatment regimen for that patient,” said Jeffry Curtis, M.D., associate professor in the Division of Clinical Immunology and Rheumatology. “It’s an effort to discover what treatments are working best for which patients.”
The study will gather data through electronic devices used by a patient during a clinical visit to his or her doctor’s office or at home via the Internet. Surveys housed on the devices will help answer questions such as how a patient is feeling, and what changes may have recently occurred in his or her condition.
|The study will gather data through electronic devices used by a patient during a clinical visit to his or her doctor’s office or at home via the Internet. Surveys housed on the devices will help answer questions such as how a patient is feeling, and what changes may have recently occurred in his or her condition.|
“The surveys will gather data not necessarily found in a medical record,” Curtis said. “It will create an infrastructure to help people with a chronic disease be part of national research projects. It will give them a way to have their voices heard by both their personal health care provider and the overall research community, as well as policymakers in the delivery of medical care.”
CreakyJoints is the most popular arthritis social community in the world, with more than 67,000 members, and the most popular arthritis Facebook page in the world. It provides education, support and advocacy for patients with arthritic disease through social media, smartphone apps and in-person events.
Curtis says affiliation with CreakyJoints provides access to a large number of engaged rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis and psoriasis patients — the groups being studied.
“We want to create an environment where we are continually collecting data on a long-term, ongoing basis,” said Curtis. “Armed with that data, we can continue to fine-tune treatment strategies with a goal of remission of the disease. We are excited to be able to do this patient-centered project with funding from PCORI, as PCORI has patients involved in every step of its funding and review process.”
Curtis says inflammatory diseases such as rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis and psoriasis are a key focus for comparative effectiveness research. New biologic medications that target specific components of the immune system have proved effective for most patients, with major improvements in quality of life, but at a high and recurring cost. Information gathered in this study about the effectiveness of such treatments would be a valuable resource.