Recently members of the CreakyJoints Australia (CJA) team had the privilege of attending the APLAR-ARA congress in Brisbane where we met with many industry professionals and attended several informative sessions. This year, the Asia Pacific League of Associations for Rheumatology (APLAR), the Australian Rheumatology Association (ARA) and the Rheumatology Health Professionals Special Interest Group (RHPSIG) joined forces to provide both a forum for exchange on cutting edge scientific and clinical information.

The congress drew on international, regional and Australasian speakers and facilitated interactions among physicians, researchers, scientists, clinicians and other health and industry professionals from across the Asia Pacific region.

Our CJA team at this congress included Naomi Creek (CJA National Coordinator), Rosemary Ainley (CJA Editor and Team Writer), Kasey Gardiner (CJA Patient Council Brisbane Representative) and Seth Ginsberg (Cofounder of CreakyJoints and the Global Healthy Living Foundation).

Entrance to the Exhibition Hall; Research Posters; CreakyJoints Australia team members at their stand: Seth Ginsberg (Co-founder), Kasey Gardiner (Qld Patient Council representative), Naomi Creek (National Coordinator), Rosemary Ainley (Editor & Writer); Koala in the Australian Animal zone; information on the CreakyJoints Australia stand; Naomi cuddling a wallaby.

Sharing the Patient Voice

While CJA has had an established presence at previous ARA Annual Scientific Meetings, this year, for the first time, we were invited to have our own booth in the exhibitors hall, alongside our fellow peak industry bodies, Arthritis Australia, Musculoskeletal (MSK) Australia and Scleroderma Australia and representatives from the major pharmaceutical companies.

One of our key goals was to promote awareness of our soon-to-be-released free ebook Raising the Voice of Patients: A Patient’s Guide to Living with Rheumatoid Arthritis in Australia. These Patient Guidelines were based on the US version of the document but have been rewritten by members of the CJA team (all arthritis patients ourselves) to be relevant to all Australians with rheumatoid arthritis (RA). The Patient Guidelines will include easy-to-read information on topics such as:

  • How RA affects the body
  • How to deal with your diagnosis
  • How to navigate the Australian healthcare system
  • The medical and holistic treatment options available, and more

This ebook will soon be available as a downloadable PDF from our website. In the meantime, you can sign up to be notified when this exciting new resource is launched.

At the congress, we handed out business card-sized promotional cards with the URL of the ebook registration page on our website. These proved to be a hit and many attendees grabbed them as a reminder to register as soon as possible as they could already see the Patient Guidelines as a unique and valuable resource for all those dealing with RA.

CreakyJoints Australia Gets Social

The CJA team were active on social media during the congress. We shared many highlights on our Instagram, Facebook and Twitter pages using the hashtag #APLAR19. Of course, there were many selfies and group photos shared on personal accounts, too.

It was also heartening for us as patients to have many rheumatologists and other attendees approach us and ask about our personal journeys. We forged many new friendships and met up with many old friends. It was especially interesting to chat to health professionals from other Asia Pacific nations about the similarities and differences in our health systems and patient’s access to quality care.

Some of us also made friends with the wonderful creatures at the Native Animals stand which was a big drawcard in the exhibition hall. The keepers brought different critters to their display each day. Although, obviously aimed at the overseas visitors, many the Aussies couldn’t resist getting our photos taken with them, too.

Seth Ginsberg, Rheumatologist Dr Irwin Lim and Naomi Creek; Naomi Creek, Annie McPherson (President of AS Victoria) and Rosemary Ainley; The Exhibition Hall; The CreakyJoints Australia team with the wonderful women from Association of Women in Rheumatology (AWIR); Rosemary Ainley and Naomi Creek with Professor Stephen Hall; Session in the Great Hall.

APLAR-ARA 2019 Session Highlights

Although we spent much of our time building relationships with people at our stand and around the venue, we also attended as many of the sessions as we could. They were all very informative, but some of the stand-out sessions for us included those relating to topics such as:

  • The increasing relevance of real world data, patient-recorded outcomes and patient preferences in clinical decision making
  • The role of AI and digital health records in the rheumatology health space
  • The increasing role of rheumatology nurses and telehealth services in improving patient access to care in Australia
  • The disconnect between what patients and their rheumatologists focus on
  • The advances in treatment options for arthritis and related conditions

What happens next?

We plan to use some the information we gathered and alliances we made to inform future content for our website and future CJA projects. Many exciting ideas were born, so be sure to watch what we do over the next year and beyond.

One of the best outcomes of this congress was having CJA, Arthritis Australia, MSK Australia and some of the pharmaceutical companies actively talking and sharing ideas on how we can cross-promote our resources based on patient needs rather than working alone and duplicating resources. After all, together, we can achieve much more.

You can register now to receive an email notification as soon as our Raising the Voice of Patients: A Patient’s Guide to Living with Rheumatoid Arthritis in Australia ebook is released.

Health professionals and organisations can also contact CreakyJoints Australia to order batches of the ebook promotional cards to hand out to patients looking for a practical and reliable handbook on living well with RA or to request any other CJA literature.