#169 Arthritis Australia launches rheumatoid arthritis patient-support website
26 May 2020
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.
Rheumatologist, Prof Susanna Proudman, said the holistic approach is a game-changer for people with rheumatoid arthritis (RA) and is encouraging other doctors to explore the new website and recommend it to their patients.
“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,” Prof Proudman explained. “The MyRA website provides a holistic resource and trusted support for people with RA that can be confidently recommended by specialists and GPs.”
“It 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 RA can benefit from the wisdom of others who have already been down the same path.”
More than 450,000 Australians live with 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 RA can lead full and active lives.
“Everyone's journey with RA is different. Some people are at the starting point, while others have been living with arthritis for decades,” said CEO of Arthritis Australia, Andrew Mills. “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 RA were telling us, Arthritis Australia wanted to develop a national, gold standard patient-support website that was open to everyone with RA is and that people and clinicians could trust. Through thorough consultation, 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 RA.”
“Understandably, due to funding, most patient-support programs are linked to a specific drug the person is taking. However, with RA, medication is likely to modify over time and changing patient programs can get complicated. That’s why it is important that this website is ‘medication agnostic’. There are also many people with RA that don’t have access to a patient-support program at all.”
The MyRA website provides the full spectrum of trusted information with input from respected arthritis organisations from around the globe. The website also links through to the National Arthritis Infoline - 1800 011 041 - and state and territory arthritis organisations to provide 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 also looks at how to build good relationships with healthcare teams and provides updates about COVID-19.
“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,” Mr Mills said.
The project was independently developed by Arthritis Australia for Australian users with unrestricted, educational grants from sponsors. This required an ambitious whole-of-health-sector approach, meaning people living with RA, clinicians, health workers, companies and affiliated state and territory arthritis organisations all came together to create a centralised tool. The website uses algorithms to get to know participants over time, routinely checking in with how they are feeling. The intent is for this longitudinal information to help identify how health services can be improved to achieve better outcomes for people living with RA.
““A coordinated approach, thorough consultation with consumers and pooled funding delivers what people living with RA have told us they need,” Mr Mills said. “Information is independent and people will still receive relevant medication information, but that information will change if they change medication. To our knowledge, this approach 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.”
President of the Australian Rheumatology Association, Prof Catherine Hill, said, “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 RA patient experience. By providing people with quality information about RA, some simple management skills and the opportunity to share the experience of others, we can help everyone live a better life with RA.”
More information can be found at myra.org.au
National Arthritis Infoline: 1800 011 041