Arthritis Australia and the ARA have launched a website for patients with RA that can display personalised resources and events based on the patient’s location and disease activity – if the patient choses to disclose that information.
Arthritis Australia and the ARA have launched a website for patients with RA that can display personalised resources and events based on the patient’s location and disease activity – if the patient choses to disclose that information.
The MyRA website aims to put high-quality, evidence-based patient resources all in one place to support the patient’s journey from diagnosis through to disease management, says Andrew Mills, the CEO of Arthritis Australia.
The website is editorially independent and is funded by an educational grant from sponsors UCB Australia, Pfizer, Janssen, Lilly, Novartis and Gilead.
“We really wanted to make sure that we created something that was called gold class, cutting edge and something that will adapt as consumers’ needs change over time,” says Mr Mills.
Patients with RA can choose how much personal information they provide when they register for the website and can sign up with a pseudonym if they prefer, says Mr Mills.
Patients can also use the website for free without giving up any information about themselves. Any personal information provided by patients will not be given to third parties or used for any purpose other than providing patients with resources, says Mr Mills.
“Anyone can sign in and then go online to look at those resources – just go to myra.org.au,” he says. “There is a registration process that we would encourage visitors to use. It’s very secure with all the latest privacy provisions. This registration process allows the website to tailor information to the patient.
For instance, if a patient tells the website that they live in Rockhampton in Queensland, any events that pop up on the website will be local ones. “We’re pretty excited about it actually because we think it’s going to be more of a one stop shop for patients,” said Professor Catherine Hill, the incoming president of the Australian Rheumatology Association.
“It’s got this functionality whereby patients can put in their postcode and they will be able to access services in their area, which will be great. “And it’s got information about the support groups and information about different aspects of rheumatoid arthritis and the best ways to manage them.”
Professor Hill said she would definitely recommend the website to her patients with RA.
“Andrew Mills actually presented this idea at the ARA meeting state meeting that we had about a year ago … and I’ve got to say it was extremely well received by the by the rheumatologists,” she said.
