Focus now on using collected data to develop and deliver targeted support services.
It’s not often you see the backend of a website in the spotlight, but five months after the launch of the MyRA.org.au website, this is exactly what Arthritis Australia is doing.
The MyRA.org.au website, which is endorsed by the Australian Rheumatology Association, aims to put high-quality, evidence-based consumer resources all in one place to support people with rheumatoid arthritis at all stages of their disease journey from diagnosis through to ongoing disease management.
“We’ve had more than 13,000 users and 1,500 registrants sign up to MyRA.org.au since the launch, which is exciting on its own,” Franca Marine, Acting CEO of Arthritis Australia, said.
“While that number continues to increase over time, we are pushing ahead with further development and investigating what this website can do for the rheumatoid arthritis community beyond providing information to individuals.”
The original concept for MyRA.org.au was to fill a void in the availability of personalised information for people with rheumatoid arthritis. Now that this has been achieved, the focus has shifted to how the data provided by registrants in order to receive personalised information could be used to develop and deliver targeted support services, as well as to provide valuable insights into how the cohort is faring across a range of variables.
Professor Susanna Proudman, Medical Director of Arthritis Australia, also highlighted the potential value of the data collected by the site. “While keeping privacy and data security at the forefront of our activities, we are in the process of getting ethics approvals to explore how this data, when examined closely, can be used to shape the future of support programs for people with inflammatory arthritis,” Professor Proudman said.
“Essentially, the website has the potential to pinpoint registrants who are struggling with higher disease severity, or lack confidence in managing their condition, and put them in touch with an appropriate service to provide them with real-time support,” she said.
“Rheumatologists will be able to refer their patients to this website knowing that they will receive support when they need it.”
In addition, Professor Proudman highlighted that research was another area where the website could have a significant impact.
“While patients always have the option to freely use the website without divulging any personal data, for those who do give specific permission,” she said, “their information can support future research opportunities into rheumatoid arthritis.”
Soon to join MyRA.org.au on this uncharted journey will be MyPsA.org.au, which will focus on the 200,000 Australians living with psoriatic arthritis.
“Psoriatic arthritis is a complex arthritis condition for patients and health professionals, involving both rheumatic and dermatological features simultaneously,” Ms Marine said.
“Using the MyRA.org.au as a template, MyPsA.org.au will assist people with psoriatic arthritis to find up-to-date on information about their condition, as well as connecting with local events and services.”
MyPsA is being funded through the Australian Department of Health as part of the National Strategic Action Plan for Arthritis, and with support from unrestricted, educational grants from sponsors Janssen, Novartis and UCB Australia.
MyRA was funded by unrestricted, educational grants from sponsors UCB Australia, Pfizer, Janssen, Lilly, Novartis and Gilead.
A similar website for ankylosing spondylitis/axial spondylarthritis is also being considered, pending funding.
