ArthritisPower® Preliminary Results to Be Presented at Annual European Congress of Rheumatology (EULAR 2016) in London
Studies Find Arthritis Patients Underutilized as Research Participants, But Can Speak to Essential Research Priorities
UPPER NYACK, NY (June 8, 2016) –CreakyJoints®, the go-to source for more than 100,000 arthritis patients and their families world-wide who are seeking education, support, advocacy and patient-centered research, today announces that preliminary results stemming from the development and launch of the ArthritisPower® research registry will be presented at the Annual European Congress of Rheumatology (EULAR 2016) in London. Specifically, at the People with Arthritis and Rheumatism in Europe (PARE) sub-meeting on June 10, an oral presentation will report findings from a study titled, “Rheumatoid Arthritis Patient Characteristics and Willingness to Participate in Research Among Members of the CreakyJoints Arthritis Patient Community: Results from a Patient Survey.” Also on June 10, a poster in the Education category titled, “Patients’ Prioritization of Patient-Centered Education and Research Topics in Rheumatic Disease,” will be presented.
“At its core, patient-centered care brings together patient and physician perspectives when developing treatment strategies. Historically, the rheumatology patient community has not had measurable and actionable means to help determine what researchers investigate to better understand arthritis. Now we do,” said W. Benjamin Nowell, Ph.D., Director of Patient-Centered Research at CreakyJoints and lead author of both studies. He is also a Principal Investigator of ArthritisPower. “As demonstrated by these studies, people living with arthritis are willing to participate in research and have concrete ideas about the questions that need to be answered in order for them to make informed and personalized healthcare decisions with their doctor.”
Arthritis Community Open to Research Participation
In collaboration with the University of Alabama at Birmingham, and supported by the Patient Centered Outcomes Research Institute (PCORI), CreakyJoints created ArthritisPower, the first ever patient-led, patient-centered research registry for arthritis. As part of its development, CreakyJoints surveyed its membership to better understand how arthritis patients prefer to learn about research opportunities, who they most trust to invite their participation in studies, and their level of interest in study participation. As described in the PARE presentation, results show that while most patients, 93 percent, have never participated in arthritis research, they would be interested in participating, particularly if the opportunity was presented by their own doctor.
A sample of 970 registered CreakyJoints members who identified as rheumatoid arthritis patients completed a survey on willingness to participate in research in 2014-2015. Most patients (68 percent) had never taken part in research, yet nearly all respondents (93 percent) would be somewhat (27 percent) or very interested (66 percent) in research participation if they were invited by their physician. Similarly, patients would be willing to participate if they were invited by a medical school/hospital (87 percent), non-profit organization (79 percent), or the government (73 percent). More than half of all respondents expressed interest in working with a drug company (63 percent), but there was somewhat lower interest in working with a private company (50 percent) or insurance company (46 percent).
Prioritizing Research Topics
In a separate study aiming to better understand the arthritis community’s research priorities, CreakyJoints members were asked to identify and rank their most pressing education and research concerns. As reported in the poster presentation, among the individual items rated as “Extremely Important” by a majority of patients were: How arthritis affects more than just your joints (86 percent), What are the signs that the medication is not working (84 percent), Importance of knowing about how the disease will progress even if the news is bad (83 percent), among others.
The two-phase study included virtual focus groups followed by on online survey. In the first phase 47 CreakyJoints members participated in six nominal groups held in June and July, 2015. Each group generated a set of education topics in their own words and then rank-ordered their relative importance. Based on this qualitative work, a survey was created and, in the second phase, deployed more widely to the CreakyJoints membership. Items on the survey were topics expressed by patients in the nominal groups. Among the 400 survey participants, the mean (SD) age was 55 (11.5) years with 86 percent women and 82 percent white. Participant health conditions included a range of rheumatologic conditions (not mutually exclusive): rheumatoid arthritis (74 percent), osteoarthritis (45 percent), fibromyalgia (26 percent), osteoporosis (18 percent), psoriatic arthritis (8 percent), lupus (5 percent) and ankylosing spondylitis (5 percent).
“Understanding the education needs of patients will allow us to better influence future research, particularly as we engage with institutions and scientists interested in working with ArthritisPower infrastructure and data,” said Jeffrey Curtis, MD, MS, MPH, William J. Koopman Endowed Professor in Rheumatology and Immunology at the University of Alabama at Birmingham, Division of Clinical Immunology and Rheumatology, a Principal Investigator of ArthritisPower and a study co-author. “Certainly, identifying and studying new treatment options should remain a key component of scientific engagement, but this study reiterates that quality of life measures as well as concerns about disease progression and treatment are high priority topics for the arthritis community.”
Created by CreakyJoints in collaboration with the University of Alabama at Birmingham, and supported by a multi-year, multi-million dollar investment by the Patient Centered Outcomes Research Institute (PCORI), ArthritisPower is the first ever patient-led, patient-centered research registry for arthritis, bone, and inflammatory skin conditions. ArthritisPower is part of PCORnet, the National Patient-Centered Clinical Research Network, a large, highly representative, national network for conducting clinical outcomes research.
The ArthritisPower mobile and desktop application allows patients to track, measure, and share their symptoms and treatments outcomes while simultaneously participating in arthritis research via informed consent. ArthritisPower Patient Governors serve as gatekeepers for researchers seeking to access registry data or solicit the community to participate in unique, voluntary studies. Patient Governors also help to prioritize research requests and will help to disseminate research findings to members of CreakyJoints, the go-to source for more than 100,000 arthritis patients and their families world-wide who are seeking education, support, advocacy and patient-centered research. To learn more about the ArthritisPower Research Network, visit www.ArthritisPower.org
CreakyJoints®, now in its 17th year, has evolved into the go-to source for more than 100,000 arthritis patients and their families world-wide who are seeking education, support, advocacy and patient-centered research. Co-founded in 1999 by arthritis patient Seth Ginsberg and social entrepreneur Louis Tharp, CreakyJoints is part of the Global Healthy Living Foundation, www.ghlf.org whose mission is to improve the quality of life for people with chronic illness. For more information and to become a member (for free), visit www.CreakyJoints.org.