FOR IMMEDIATE RELEASE
MEDIA CONTACT
Jessica Daitch
Phone: 917-816-6712
Email: jdaitch@ghlf.org
Free App Will Help Spanish-Speaking Patients Track Their Disease and Participate in Research, Thereby Increasing Understanding of Health Disparities and Pointing to Unmet Treatment Needs
UPPER NYACK, NY (May 3, 2021) – CreakyJoints®, the multi-cultural digital arthritis community for patients and caregivers worldwide and part of the Global Healthy Living Foundation (GHLF), today announced the availability of ArthritisPower® Español, a patient-centered research registry entirely available in Spanish for people living with joint, bone and inflammatory skin conditions, like arthritis. The COVID-19 pandemic shined a much-needed spotlight on health disparities in Hispanic communities (among others), but multiple inequities and inequalities facing Spanish-speaking communities predate the pandemic, including adequate access to healthcare and information. Hispanics are also under-represented in medical research. ArthritisPower Español invites Spanish speakers, many of whom self-identify as Hispanic, to proactively participate in their disease management and contribute to better understanding of people living with arthritis and other inflammatory disease.
“It’s incredibly exciting to offer ArthritisPower Español to our Spanish-speaking community,” said Daniel Hernandez, MD, Director of Medical Affairs and Hispanic Outreach, CreakyJoints Español. “We know that engaged patients – those who are educated about their disease and participate in shared decision making with their providers – have improved health outcomes. ArthritisPower Español is an easy-to-use tool that will help patients monitor the aspects of their disease most important to them and discuss their data with their doctors.”
Available as a free mobile and desktop application, the ArthritisPower Research Registry first launched in 2015 and now includes more than 30,000 people who track their experience of rheumatic, musculoskeletal and other inflammatory diseases using the same Patient Reported Outcome (PRO) measures used in their health care provider’s office. Patients can select from dozens of PROs to track – ranging from pain, fatigue, physical function, and more – and share such data directly with their doctor. They can also participate in voluntary research studies. Results from previously conducted ArthritisPower studies have been presented at U.S. and international medical meetings and published in peer-reviewed journals. Launching ArthritisPower Español is a deliberate investment by CreakyJoints and their parent organization, the Global Healthy Living Foundation, to encourage people most comfortable communicating in Spanish to proactively contribute to their health data to improve their personal and community understanding of arthritis.
ArthritisPower Español Available to Millions
The latest data available by the Centers for Disease Control and Prevention state that 4.4 million Hispanic Americans live with some form of doctor-diagnosed arthritis. While the prevalence of arthritis among Hispanics is less than non-Hispanic whites, they are nearly twice as likely to become disabled from arthritis and experience joint damage. More than a disease of older adults, arthritis affects millions of people who live with its inflammatory forms, like rheumatoid arthritis, onset of which can start at any age.
“I’ll be encouraging my patients to download the ArthritisPower app because I want them to select PROs to track that are important to their treatment goals and take advantage of other built-in tools, such as the medication tracker and diary notes where a patient can log anything that may been going on in his/her life that triggered some sort of response, such as taking a vacation or starting a new medication,” says Juan Maya, M.D., a rheumatologist with Rheumatology Center of Palm Beach and a medical advisor to CreakyJoints Español. “The more a patient learns about and understands their arthritis, the better we can collaborate to build an actionable and effective management strategy.”
“Given what we know of the health disparities experienced by Hispanics in the United States, their collective data will be a powerful tool to inform researchers and health providers about the needs of this specific population of the arthritis community,” said Shilpa Venkatachalam, PhD, who is the Associate Director, Patient Centered Research, at CreakyJoints® and the Global Healthy Living Foundation and is a coprincipal investigator of the ArthritisPower® Patient-Powered Research Registry. “We’re excited about expanding the reach of the ArthritisPower Research Registry and look forward to welcoming Spanish-speaking members to our research community.”
Select ArthritisPower Español participants will be invited to join the existing ArthritisPower Patient Governor Group, which is responsible for co-evaluating research study requests in collaboration with clinicians, researchers and CreakyJoints and also contributes perspective on what research questions should be asked in the future in ArthritisPower.
“Part of our mission is to provide patients with opportunities to amplify their voice and feel heard,” said Louis Tharp, executive director and co-founder of CreakyJoints. “We look forward to seeing the continued growth of ArthitisPower, which began with infrastructure funding from the Affordable Care Act’s Patient Centered Outcomes Research Institute, and for users to benefit from the data they collect and share with their provider team.”
Created by CreakyJoints®, ArthritisPower® is the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions, as well as arthritis and rheumatological manifestations of gastrointestinal-tract (GI) conditions. With tens of thousands of consented arthritis patients, the free ArthritisPower mobile and desktop application allows patients to track their disease and participate in voluntary research studies in a secure and accessible manner. Results from ArthritisPower studies are frequently published in peer-reviewed journals and presented at medical meetings in the United States and around the world. ArthritisPower Patient Governors serve as gatekeepers for researchers who seek to access registry data or solicit the community to participate in unique, voluntary studies. To learn more and join ArthritisPower, visit ArthritisPower.org.
CreakyJoints® is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients in English and Spanish through our popular social media channels, our websites, and the 50-State Network, which includes more than 1,600 trained volunteer patient, caregiver, and health care activists.
Part of the Global Healthy Living Foundation, CreakyJoints also has a voluntary patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org), which includes tens of thousands of consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints publishes the popular “Raising the Voice of Patients” series, which offers downloadable patient-centered educational and navigational tools for managing chronic illness. It also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org), for telehealth and virtual-care support. All programming is free, always. For more information and to become a member, visit CreakyJoints.org.
Find us online:
CreakyJoints: CreakyJoints.org
CreakyJoints Español: CJES.org
CreakyJoints Australia: CreakyJoints.org.au
CreakyJoints Canada: CreakyJoints.ca
Global Healthy Living Foundation: ghlf.org
Facebook: facebook.com/CreakyJoints & facebook.com/ghlf
Twitter: @GHLForg, @CreakyJoints, #CreakyChats
Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp
TikTok: globalhealthylivingfnd
LinkedIn: linkedin.com/company/ghlf
