Global Healthy Living Foundation to Present at the VA Medical Device Registry Summit
The only patient invited to speak about the value of Medical Device Registries from the patient perspective to stakeholders in a session that will include comments from Veterans Affairs (VA) Chief of Staff Peter O’Rourke, U.S. Food and Drug Administration (FDA) Center for Devices and Radiological Health Director Jeff Shuren, MD, PhD, Centers for Medicare and Medicaid Services Administrator Seema Verma (tentative), and American Medical Association Vice-President of Performance Improvement Kathleen Blake, MD (among others), Dr. Stake will describe her personal experience with juvenile hip dysplasia, which resulted in the need for hip replacement surgery at the age of 38. She will also present results from a series of focus groups entitled, “Bringing STakeholders Together for Engagement in Research for the Selection of Arthroplasty Implant Devices” (BeTTER SAID) demonstrating the real world need to disseminate information about medical devices, including how they are selected, and their safety and performance over time, to patients considering joint replacement surgery.
Dr. Stake will make the point that, “As a patient, making the decision to have joint replacement can be overwhelming. A person weighs their own pain and disease state against their ongoing responsibilities to a family and job, when deciding to move forward with major surgery that will require recovery. According to our research, most patients lack adequate information about medical devices that would enable them to weigh risks and benefits and make informed choices about surgery and follow-up.”
Available for Interview:
- Christine Stake, PhD, MA, volunteer patient advocate for CreakyJoints
- W. Benjamin Nowell, PhD, Director of Patient-Centered Research, CreakyJoints and co-principal investigator of ArthritisPower and BeTTER SAID
CreakyJoints is Bringing STakeholders Together for Engagement in Research for the Selection of Arthroplasty Implant Devices (BeTTER SAID) in partnership with the RAND Corporation. Funded by the Patient Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award, BeTTER SAID is a coalition of patients, patient advocates, researchers, clinicians, and health system leaders examining strategies to improve hip and knee arthroplasty device safety. An engaged and informed cohort of patient research partners and stakeholders in the BeTTER SAID network are now available to participate in the design, implementation and dissemination of comparative effectiveness research about arthroplasty (joint replacement). For more information, visit https://creakyjoints.org/research/better-said-about/.
Created by CreakyJoints 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 joint, bone, and inflammatory skin conditions. The free ArthritisPower mobile and desktop application allows patients to track and share their symptoms and treatments while simultaneously participating in research in a secure and easy manner. ArthritisPower Patient Governors serve as gatekeepers for researchers seeking to access registry data or solicit the community to participate in unique, voluntary studies. To learn more and join ArthritisPower, visit www.ArthritisPower.org.
About Global Healthy Living Foundation
The Global Healthy Living Foundation is a 501(c)(3) non-profit organization whose mission is to improve the quality of life for people living with chronic illnesses, such as arthritis, osteoporosis, migraine, diabetes, psoriasis, and cardiovascular disease by advocating for improved access to care at the community, state, and federal levels, and amplifying education and awareness efforts within its social media framework. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints, the go-to source for millions of arthritis patients and their families world-wide who are seeking education, support, advocacy and patient-centered research through ArthritisPower, the first ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. Visit www.ghlf.org for more information.
Global Healthy Living Foundation
Jessica Daitch, 917-816-6712
Source: Global Healthy Living Foundation