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Report to CADTH

Patient Perspectives of 2017 Symposium

Linda Wilhelm

The Canadian Arthritis Patient Alliance

 

Unfortunately, my flight was delayed and I did not arrive in time for The Welcome Reception and Poster session. Laurie Proulx an Ottawa based CAPA Board member, poster co-author and fellow symposium panelist graciously volunteered to fill in and present my poster. She also attended the patient get acquainted meeting which she found very valuable.

 

The opening plenary was really interesting; I especially enjoyed hearing the perspective of Dr. Ken Milne who I found very engaging. The speaker from the Council of Canadian Innovators came across like she was promoting her own interests. While Bettina Ryll was an excellent speaker, we have plenty of Canadian patient advocates who are skilled and knowledgeable, so that was a bit disappointing.

 

I also find the healthcare administrator and deputy minister who spoke in the plenary sessions a bit of a contradiction. They were from Atlantic Canada which is where I reside. NB has very little patient engagement in their decision making. I looked up NS Health Authorities website, despite her claims that they actively engage patients I could not find anything on meaningful engagement. Part of patient engagement is making opportunities easy to find. Over two years ago the Health Minister in NS formed a ministerial working group to look at gaps in inflammatory arthritis care. The report was supposed to be complete in six months. While delayed the report is now complete but is not accessible to the public; not very transparent or patient friendly.

 

One of the comments from a patient who had never attended a CADTH symposium was that many of the sessions, particularly those about patient input and meaningful engagement were primarily attended by participants who were already working collaboratively with patients. Perhaps in future symposiums there could be a plenary session with a panel of patients speaking about their vision, priorities and involvement. This same patient, Gerald Major from the Canadian Spondylitis Association would be an excellent choice for next years’ symposium planning committee.

 

I attended concurrent session A1, The Value of Drug Policy to decrease the costs and consequences of inappropriate prescribing. It was very interesting and certainly is a major issue for patients, highlighting the need for additional health system resources that can reduce the need for medications but require the funding of alternative treatments.

 

The next concurrent session I attended was B1 - Patient and Public Engagement   I found it interesting that Health Quality Ontario prefers to reach out to individual patients instead of engaging with knowledgeable patient organizations who understand the health care system and the global issues that affect patient populations.

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