Arthritis Australia, in partnership with the Australian Rheumatology Association, has launched a new online rheumatoid arthritis patient-support website. The free MyRA website provides individually tailored information designed to help people seize control and become active participants in their journey with the disease.
More than 450,000 Australians live with rheumatoid arthritis (RA), an autoimmune disease that causes pain and swelling of the joints. The disease can strike at any age, including during childhood, and can greatly impact on a person’s wellbeing. However, with early diagnosis and the right treatment, most people with rheumatoid arthritis can lead full and active lives.
“Everyone’s journey with rheumatoid arthritis is different. Some people are at the starting point, while others have been living with arthritis for decades,” says Andrew Mills, CEO of Arthritis Australia. “Prior to this program, we found many people were either using ‘doctor google’ to make important decisions based on incorrect, irrelevant or alarming information, joining online forums without independent and trusted moderation, or joining programs that may only be suitable at a particular point in time due to the medication they are using.”
“Responding to what people living with rheumatoid arthritis were telling us, Arthritis Australia embarked on the journey to develop a gold standard patient-support website that could meet each person where they are at on their journey, providing them with relevant, tailored, evidence-based information regardless of what drug they are currently on or how long they have been diagnosed with rheumatoid arthritis,” continued Mr Mills.
The MyRA website was developed in collaboration with state and territory-based arthritis organisations, informed also by respected international arthritis peers. The end result is a digital platform that provides a holistic patient-support system. It covers topics such as symptoms, risks, treatment options, diet, exercise, day to day tips, support services and how to manage pain, mental health and fatigue. It looks at how to build good relationships with healthcare teams and provides updates about COVID-19. The website also links through to the National Arthritis Infoline.
“A fantastic feature is the way the online patient-support website then links people with arthritis organisations nationwide and relevant local information, educational events, fitness activities, webinars and other support services, including trained health educators,” continued Mr Mills.
The project was independently developed by Arthritis Australia for Australian users with unrestricted, educational grants from sponsors, requiring an ambitious whole-of-health-sector approach.
“We welcome the incredible support from our affiliates from across Australia and look forward to continuing to work with them to holistically support patients,” continued Mr Mills. “To our knowledge, the approach we have taken with developing the MyRA website is the first of its kind – the combination of a centralised program and funding, created with support from multiple countries, to provide information that is indexed to a patient’s point in their disease journey and integrates drug-specific support.”
Rheumatologist, Prof. Susanna Proudman says the holistic approach is a game-changer for people with rheumatoid arthritis.
“Patients may only have face to face time with their rheumatologist for a few hours each year and GPs can’t be expected to cover everything outside of that. The MyRA website provides a holistic resource, trusted support and will save people a lot of time going down rabbit holes that they don’t need to that may offer unproven or even unsafe advice. People with rheumatoid arthritis can benefit from the wisdom of others who have already been down the same path.”
Prof. Catherine Hill, President of the Australian Rheumatology Association, says “We are proud to endorse this ground-breaking initiative that has been achieved by our two trusted organisations working together to address gaps in the rheumatoid arthritis patient experience. By providing people with quality information about rheumatoid arthritis, some simple management skills and the opportunity to share the experience of others, we can help everyone live a better life with rheumatoid arthritis.”
Visit the website here: https://myra.org.au
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