Believing that patient engagement leads to optimal health, Australia’s Dragon Claw charity, in collaboration with the Canadian Arthritis Patient Alliance (CAPA.) has created a tool “Know Your Numbers” to help people with auto-immunity keep track of important factors/screen tests.
After 35 years as a physician, the charity’s director, retired doctor Charmaine Jones said: “I found myself on the other side of the fence, as a vulnerable and confused patient, seeking urgent diagnosis and support.
“Months of an increasingly swollen knee led to MRIs, surgery in another country, a misdiagnosis, a total body flare of swollen joints and finally a diagnosis of rheumatoid arthritis.
”After my initial shock and denial, I came across Dragon Claw, an Australia patient-run charity dedicated to helping Auto-Immune sufferers improve the quality of their lives.
“In 2020, Dragon Claw initiated Dragon Talks, a weekly zoom education/peer support group.
“As the facilitator of these weekly meetings, I soon realised that most patients with auto-immunity had little idea of what parameters/screening tests are warranted to ensure their best possible health while living with a chronic condition.
“I also was hearing stories of a shortage of specialists and inconsistent or unavailable primary care.”
Dr Jones said she wanted to give these patients information, to put them into the driver’s seat of their health care.
“With more information available to them, patients could develop true partnerships with their physicians and healthcare teams, ensuring the best outcomes for their future,” she said.
“While volunteering with Dragon Claw, I reside in Canada and soon discovered another patient organisation that captured by attention, CAPA, the Canadian Arthritis Patient Alliance. I put together a working group.”
These two patient organisations had the same overall goal and worked together to create this patient tool “Know Your Numbers”.
