Acknowledgements. We thank these organizations and individuals for their unrestricted support.
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1 Power to the People Presented by Dawn Richards, PhD, Person with Rheumatoid Arthritis Arthritis Consumer Experts Advisory Board Member Canadian Arthritis Patient Alliance Vice President
2 Acknowledgements Over the past 12 months, ACE received unrestricted grants-in-aid from: AbbVie Corporation, Amgen Canada, Arthritis Research Centre of Canada, BIOTECanada, Bristol-Myers Squibb Canada, Canadian Institutes of Health Research, GlaxoSmithKline, Hoffman-La Roche Canada Ltd., Janssen Inc., Pfizer Canada, Purdue Pharma L.P., Takeda Canada Inc., University of British Columbia. ACE also receives unsolicited donations from its community members (people with arthritis) across Canada. CAPA received funding in the last year from the following private sector companies: AbbVie Corporation, Hoffman-La Roche Canada Ltd, Janssen Inc., & UCB Canada. Dawn Richards received speakers honoraria from the following private sector companies: AbbVie Corporation, Hoffman-La Roche Canada Ltd, & Novo Nordisk. We thank these organizations and individuals for their unrestricted support.
3 Agenda Arthritis Consumer Experts (ACE) and Canadian Arthritis Patient Alliance (CAPA) overviews Community engagement: then and now Case studies: CAPA, ACE & CRRC partnership What s the secret recipe for future success in community engagement?
4 ACE has one of a kind ideas in a world of me-too thinking Entering its 14 th year, led by people with arthritis and working for others living with the disease, their families, friends, government and the public.
5 ACE at 30,000 feet Communications tools: educating 100,000+ members and subscribers in-print + on-line 6-8 times/mo. ArthritisID + ArthritisID Pro: Most comprehensive arthritis apps for iphone and ipad Arthritis Broadcast Network (ABN): Only arthritis news aggregator site in the world Corporate Partnership: Roll out of partnership with Canada s largest retail pharmacy Shoppers Drug Mart in Pharmacy and for Women with Arthritis
6 JointHealth Programs JointHealth monthly JointHealth express JointHealth web workshop JointHealth web site JointHealth survey JointHealth Report Card All on-line and written materials produced by ACE are scientifically reviewed by the Arthritis Research Centre of Canada (ARC) as our scientific partner.
7
8 What is CAPA? Virtual, volunteer, patient-driven, national arthritis advocacy organization Education, awareness, collaboration & advocacy Those affected by the decision must be involved in making the decision
9 CAPA Believes The first expert in arthritis (or any chronic disease) is the person living with arthritis. People with arthritis have the right and responsibility to be included in the policy, health care and research decisions related to their health and quality of life.
10 Structure and Goals Support the priorities of the Arthritis Alliance of Canada Maintain regional representation (11 Board members) Expand patient involvement Obtain timely access to treatments Support advocacy efforts
11 Partners Patient organizations: Arthritis Consumer Experts Canadian Spondylitis Association Consumer Advisory Board of the Arthritis Research Centre of Canada Researchers & clinicians Canadian Rheumatology Association Arthritis Alliance of Canada The Arthritis Society Government Industry
12 Arthritis Community Engagement: Then. & Now Today Cheryl Koehn invited to be part of Canadian Arthritis Network Management Patients integrated in to CAN s activities; ACE founded; CAPA established Demonstrate through action how patients add value/direct own initiatives Along with other orgs, created Arthritis Alliance of Canada & participate in leadership Patient-led groups receive & create & produce information; Collaborate with all stakeholders; Work towards new progress
13 Engagement Case Study #1 Choosing Wisely Canada Campaign Canadian Rheumatology Association First Choosing Wisely campaign to invite patient participation Translating 5 key messages in to lay language, disseminating to other patients and the public
14 Engagement Case Study #2 A first-in-class partnership between largest arthritis consumer group. Arthritis Consumer Experts (ACE). and Canada s preeminent arthritis clinical trials network. the Canadian Rheumatology Research Consortium (CRRC).
15 KNOWLEDGE RESPECT e PASSION e INNOVATION Cheryl Ed Linda EXPERTISE Anita Kelly Dawn RESEARCH e TRUST e EDUCATION
16 JointHealth Platform Reach Monthly: 50,000 distribution and online views Workshop: 50 + views Express: 3,000 N2 Reach Authoritative Information CRRC Reach Information distributed to 65 clinical trialists offices Social Media Reach Facebook Twitter Arthritis Broadcast Network YouTube LinkedIn Video Reach Cheryl Koehn of ACE and Ed Keystone of CRRC in a fire side chat about RA and clinical trials in Canada 80 + online views On playback loop in clinical offices Partnerships Reach Canadian Arthritis Patient Alliance National Arthritis Awareness Program Arthritis Consumer Experts Canadian Rheumatology Research Consortium
17 Community Engagement The Secret Formula Move beyond traditional involvement Harness what community partners/lay people can bring to all levels of research, development, clinical trials, and beyond Empower through leadership and involvement Collaborate to the benefit of all parties Reap the larger rewards created as a result
18 Thank you! Dawn Richards Cheryl L. Koehn
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