The CreakyJoints Australia Patient Council is a team of inspiring individuals from states and territories across Australia and New Zealand living with various forms of arthritis and drawn together by a common mission. That mission is to empower Australians living with arthritis to put themselves at the centre of their own care by vocalising their treatment preferences and working in partnership with their healthcare providers. CreakyJoints Australia connects arthritis patients with current and relevant disease-specific information and support, across a spectrum of arthritis conditions via digital media.
Our second annual summit, held in Melbourne in November, was also attended by members of the CreakyJoints Australia management team and representatives from our US-based parent organisation, CreakyJoints, part of the Global Healthy Living Foundation (GHLF).
After a casual dinner on Friday night, the summit went into full swing the next day. Seth Ginsberg, Cofounder of CreakyJoints and GHLF, and Naomi Creek, National Coordinator of CreakyJoints Australia, began by welcoming all new and returning participants, introducing Joe Coe, GHLF Director of Education and Digital Strategy, and recapping on our achievements over the last year.
What we’ve been up to
The CreakyJoints Australia team have been very busy. We now have around 2,000 members and our own CJA Instagram page alongside a dedicated national audience for CJA content published on the CreakyJoints global Facebook page.
Some of our key activities over the past year included:
- Establishing strong media exposure via TV, the internet, and print media for World Arthritis Day and arthritis awareness in general. Bringing our personal perspectives and experiences to the public via the media is a dominating objective for CJA and a great way for us to raise the profile of these conditions.
- Attending the 4-day Australian Rheumatology Association Annual Scientific Meeting in May as consumer/media representatives and having a CJA information stand in the main hall.
- Attending industry and health sector events in Melbourne, Sydney, and Canberra as CJA representatives.
- Planning and creating a host of new literature and resources for Australians and New Zealanders with arthritis and their families to be released in stages over the coming few years.
The summit weekend was jam-packed with exciting presentations and roundtable discussions on several key topics, such as:
- The level of patient empowerment in doctor/patient relationships – including the barriers to communication, gender bias in diagnosis and treatment, and common perceptions of invisible illnesses.
- How social media channels can be used effectively for patient advocacy and education.
- What’s missing in manufacturer-provided patient support programs.
- How CJA Patient Council members and others can raise the voice of patients through media and the government.
- The barriers and opportunities around patient-centred research, data privacy, and digital health records in Australia and New Zealand.
Where to from here?
After the summit, we were all filled with excitement and optimism for the year ahead. We now have a list of aggressive but appropriate tasks to work on. We’ve reinforced our core values and bonded even closer as a team. And, above all, we’ve created concrete goals to help us further stem the gaps between patients, communities, health professionals, researchers, and governments.
Follow the work of CreakyJoints Australia by signing up for our free membership and regular enewsletter.
Contact our team for more information about CreakyJoints Australia and our Patient Council.
We are grateful to our sponsors, Novartis and Janssen, for their support of the 2018 CreakyJoints Australia Patient Council Summit.