Jan 25 2017
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 announced the publication of “Raising the Voice of the Patients: A Patient’s Guide to Living with Rheumatoid Arthritis”. These new guidelines are the first ever to be developed by patients and reviewed by rheumatologists, specifically for use by rheumatoid arthritis (RA) patients and their caregivers. It is the first in a planned series of patient-friendly guidelines that will cover additional related conditions such as psoriatic arthritis, ankylosing spondylitis, and others.
“For me, the greatest challenge of living with RA is the unpredictability. How I feel can change from moment to moment with no warning, and that puts stress on relationships, impacts my ability to work, and sometimes keeps me from doing things I want to do,” says Minnesota resident and CreakyJoints member Kelli Carlson, a member of the national Patient Committee that helped develop the patient guidelines. “I wish I had something like the patient guidelines when I was first diagnosed. It will be immensely helpful in not only understanding a new diagnosis, but helping explain that diagnosis to loved ones. It will also help us better understand our treatment and management options so that we feel ready and able to make decisions about our health with our doctor.”
Patients at the Center of Treatment
“Raising the Voice of the Patients: A Patient’s Guide to Living with Rheumatoid Arthritis” opens with a declarative Patient Charter, which details the guiding principles that underscore the CreakyJoints perspective on arthritis education, support, advocacy and research. Most prominently, the Patient Charter states that, “The patient experience is at the heart of medicine; thus the patient must be at the center of all medical decision making,” and that the medical process should stay between the patient and their care provider with access to care not limited by external forces (financial or otherwise). The guidelines then explain how patients can speak to their rheumatologist or other health professionals about their treatment plan, how to ask questions of their insurance company regarding coverage, and best practices for meeting or communicating with local legislators to advocate for patient-friendly health care laws. The guidelines also describe the different RA medications as well as complimentary therapies.
“Nothing is more important following the diagnosis of a lifelong chronic disease, like RA, than educating and empowering patients to make decisions about their day-to-day care,” stated Seth Ginsberg, President and Co-Founder of CreakyJoints. “Our goal is to help patients understand their treatment options and help them identify the questions to ask when planning their health management strategy. We want the RA community to proactively communicate their preferences to their healthcare team.”
Similar in spirit to the current RA Guidelines developed by the American College of Rheumatology for medical professionals, the new patient guidelines were written by a dedicated panel that included patients, rheumatologists, and CreakyJoints’ staff writers. “Raising the Voice of the Patients: A Patient’s Guide to Living with Rheumatoid Arthritis,” was reviewed by Dr. Jonathan Krant, M.D., Medical Director of CreakyJoints®, rheumatologist and Chairman of Medicine at the Adirondack Medical Center in Saranac Lakes, NY, Dr. Madelaine Feldman, MD, Rheumatology Alliance of Louisiana and Coalition of State Rheumatology Organization executive committee member; and Dr. Sarah Doaty, MD, Rheumatologist with the Alaska Native Tribal Health Consortium.