Arthritis Australia and the Australian Rheumatology Association have partnered to launch a online rheumatoid arthritis patient-support website.
The MyRA website provides information designed to empower the more than 450,000 Australians who live with the painful autoimmune disease.
Arthritis Australia CEO Andrew Mills says the goal was to develop an authoritative, gold standard website that people with arthritis and clinicians could trust.
“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,” he said.
Many patient support programs are linked to the drug companies that provide their funding but the MyRA webstite is ‘medication agnostic’ and funded by eductational grants from sponsors, Dr Mills says.
“We learnt that people wanted a 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.”
The MyRA website provides comprehensive information with input from arthritis organisations from around the globe.
It links to the National Arthritis Infoline and State and Territory arthritis organisations, and covers symptoms, risks, treatment options, diet, exercise, support services and how to manage pain, mental health and fatigue.
It also looks at how to build good relationships with healthcare teams and provides updates about COVID-19.
The website also connects users with arthritis organisations nationwide and relevant local information, educational events, fitness activities, webinars and other support services, including trained health educators.
A ‘game changer’
Rheumatologist, Professor Susanna Proudman says the website could be 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 and trusted support for people with rheumatoid arthritis that can be confidently recommended by specialists and GPs.”
In 2017–18, more than 2 in 3 people with rheumatoid arthritis aged 45 and over (experienced ‘moderate’ to ‘very severe’ pain in the last 4 weeks.
People with rheumatoid arthritis are also more likely to suffer from anxiety, depression and low self-esteem.