When arthritis patients worldwide are hurting, they can turn to CreakyJoints—an online support community for arthritis patients and family—as a source for education, support, advocacy and patient-centered research. CreakyJoints is now announcing 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.
According to the June 8, 2016 news release, “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.”
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%, 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%) had never taken part in research, yet nearly all respondents (93%) would be somewhat (27%) or very interested (66%) 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%), non-profit organization (79%), or the government (73%). More than half of all respondents expressed interest in working with a drug company (63%), but there was somewhat lower interest in working with a private company (50%) or insurance company (46%).
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%)
- What are the signs that the medication is not working (84%)
- Importance of knowing about how the disease will progress even if the news is bad (83%)
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% women and 82% white. Participant health conditions included a range of rheumatologic conditions (not mutually exclusive): rheumatoid arthritis (74%), osteoarthritis (45%), fibromyalgia (26%), osteoporosis (18%), psoriatic arthritis (8%), lupus (5%) and ankylosing spondylitis (5%).
Dr. Nowell told OTW, “Our study found that patients want to know how their rheumatologic disease will progress and how it affects other aspects of life. Questions about treatment are also high priority for patients. They want to know: What are the available treatments for a condition? What are the signs that a medication is not working? What are the side effects of medications and interactions with other medications? Patients were also concerned about quality of life issues, such as coping with a rheumatologic condition and their ability to manage treatments over time and actively communicate their questions and concerns to health care providers.”
Asked what makes this VERY patient-led, patient-centered, he added, “As a patient organization, CreakyJoints believes in the value of patient leadership and engagement in all phases of research. By developing ArthritisPower—a research network with a governance structure of Patient Governor—and by conducting studies like this one, we are able to identify the research topics that matter most to people living with rheumatologic conditions and to learn more about patient preferences for research engagement. Some patients are open to sharing everything, including Social Security number, while others may prefer to share only an email address and limited information. Because it is available as a mobile app and as a desktop application, ArthritisPower makes it easy and convenient for patients to participate to their comfort level. They can track their own symptoms and treatment, and that data can be shared with their healthcare provider. At the same time, this data is entered into the research registry via informed consent. The studies presented at EULAR demonstrate that 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.”
“The ultimate goal of ArthritisPower is to provide participants with a personalized understanding of their own health while producing data that can help everyone. It will enable researchers to study topics that are meaningful to patients and help them make healthcare decisions according to personal circumstances, conditions, and preferences.”
