Patient Perspective, Growing in Importance 

 

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Close to 16,000 rheumatologists, rheumatology health professionals, fellows-in-training, and exhibitors from more than 100 countries gathered in Atlanta this past November to learn about the latest scientific advances, clinical issues, and professional development opportunities at the annual American College of Rheumatology (ACR) conference.  

The patient perspective is growing in its importance as the rheumatology community places increasing value on the patient voice in helping support and improve patient care.

Marie- Claude Beaulieu, a member of Arthritis Research Canada/Arthrite-recherche Canada’s Patients Interested in Arthritis Research (PIRA), was given the opportunity to attend and present a poster at the Conference and shares her experience. Her poster “Living and adjusting to a rheumatoid arthritis (RA) with an interdisciplinary team” was part of the Patient Perspectives Poster Program

This is the second time this program was offered, following last year’s positive response from patients and rheumatologists alike.

There were 10 patients participating in the Poster Program, bringing perspectives from various parts of the world, such as Africa, the United States, and Canada (both British Columbia and Quebec). Each patient was addressing a different form of arthritis, including lupus, rheumatoid arthritis, recurrent polychondritis, and granulomatosis with polyangiitis.

At a special meeting to share our posters a wide range of topics were highlighted: the patient-doctor relationship, collaboration with nurses and other medical professionals, teamwork, patient information, importance of talking to other patients, access to specialists such as physiotherapists and occupational therapists, and the importance of clinical examination – even when lab tests are normal.

In addition, many participants mentioned the benefits of swimming, cycling, walking, art therapy and meditation in managing their illness. Family support was deemed essential. Everyone has periods of discouragement or relapse, at these times the support of your treatment team and relatives is vital. Interaction between patients is also important in providing courage and determination. Many of us have very difficult stories and have experienced complications. Despite different diseases and countries – the importance of the relationship with clinicians, access to care, teamwork, and patient information is the same.

This was a great learning opportunity, connecting with patients, relatives, clinicians and specialists from countries around the world. They were impressed by the collaboration between patient and medical professionals in Quebec. While we have made important strides, there is still much room for improvement with patient involvement in arthritis research

Here is the link for access to Abstracts Patient Posters:

https://acrabstracts.org/sessions/patient-perspectives-poster-session-2019/

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