ourbelief

The Canadian Arthritis Patient Alliance (CAPA) is Canada’s only volunteer-based arthritis patient organization run by patients for patients. True to its grassroots nature, CAPA is entirely patient-driven, independent, and supports a community of people living with arthritis across the nation. Our belief is that the first expert on arthritis is the person who lives with arthritis and provides a critical voice and perspective that needs to be heard in decision-making.

whatwedo

CAPA uses the power of information, research, and communication to help people living with arthritis find their voice and to support others. Many people think arthritis only affects older people, or that it is merely a word for aches and pains. At CAPA, we work to clear up these misconceptions to create a better Canada for people living with arthritis and for those who support them. Arthritis is a number of debilitating diseases which affect Canadians of all ages and backgrounds. By collecting and producing patient resources, policy papers, and outreach projects, CAPA seeks to educate and empower people living with arthritis so they can continue to positively contribute to society and improve their health care experiences. CAPA communicates its work and information in many ways:  website, monthly newsletters, Facebook page, Twitter (@CAPA_Arthritis), Youtube channel, and this year we created an Instagram account (capa_arthritis).

CAPA’s strategic priorities are achieved through collaboration and partnership with other patient organizations, representatives from government, policy-makers, researchers, healthcare professionals, industry, not-for-profit organizations, and other individuals and organizations. We welcome all Canadians with and affected by arthritis and those who support CAPA’s goals to join our community.

COVID19

2020 has been an unprecedented year with the advent of a global pandemic. CAPA and its arthritis community were forced to pivot in many unplanned ways. This work will be highlighted throughout the reflections on 2020 and includes: developing an evidence-based COVID19 website; hosting a Tweetchat on the ‘lighter side’ of COVID19; participating in community-focused efforts with respect to the hydroxychloroquine shortages; contributing to research efforts and, more. 

ourreflections

Since 2013, CAPA has set out an annual strategic plan to guide its operational activities. These plans are publicly available on CAPA’s website to ensure transparency and accountability to members. In the section that follows, we highlight our achievements with respect to the 2020 CAPA strategic plan.

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ourachievements2020

The priorities of CAPA’s 2020 Strategic Plan are outlined below along with an update on accomplishments with respect to each of these.

One

Maintained an active, effective organization.

Strategic Actions:
1 Continued to fundraise for administrative needs and to support planned initiatives. Diversified fundraising to include funding from research projects that CAPA members participate in as collaborators, government organizations, and other public sources, as well as sourcing donations for our efforts to share information related to research projects that may be of interest to our members.
2 Welcomed three new Steering Committee members who bring a range of arthritis and lived experiences.
3 Continued to engage new and existing membership through outreach and participation in the arthritis community.

Two

Continued to reach out and meet the needs of the CAPA community.

Strategic Actions:
1 As a virtual organization, we continued to add new resources and information to our website in a timely way.
2 We shifted from a quarterly to publishing a monthly newsletter and produced 12 monthly newsletters in 2020. We have also started to feature video conversations with our Steering Committee members. We worked with CreakyJoints and Lene Andersen (@theseatedview) on tweet chats and in sharing information.
3 Continued and grew CAPA’s social media efforts (Facebook – 769 followers, Twitter – 1500 followers, and created an Instagram account – 139 followers).

Three

Initiated grass roots action.


Strategic Actions:
1 Continued supporting CAPA community initiatives that are aligned with CAPA’s interests and allowed an opportunity to promote CAPA.
2 Continued to participate in the SPOR Chronic Pain Network and Evidence Alliance, providing the voice of people living with arthritis and pain throughout all Network activities, providing the voice of people living with arthritis and pain.
3 Continued to engage with Health Canada on issues of importance to the CAPA community through a leadership role on the Canadian Pain Task Force and through participating in national consultation efforts.
4 Continued to engage in dialogue related to pharmacare, drug pricing, and other issues of relevance to the CAPA community. Through the Best Medicines Coalition (BMC) and independently we provided input and submissions related to the Patented Medicines Pricing Review Board proposed regulation update. We also provided input to the Canadian Agency for Drugs and Technologies in Health’s (CADTH) proposed alignment of processes and various drug-specific patient input submissions. We were part of consultations with the Ontario Ministry of Health with respect to its biosimilars policy, attending in person and phone meetings and submitting two letters.
5 Contributing to the arthritis community’s grassroots efforts to advocate for continued funding for The Arthritis Program in Newmarket (Dr. Carter Thorne’s rheumatology clinic).

Four

Continued to work closely with our strategic partner, The Arthritis Society.

Strategic Actions:
1 Met with the Society’s new leadership at a national level. One Steering Committee member participated in an innovation brainstorm hosted by the Society leadership and one Steering Committee member participating in the Society’s Online Consumer Panel.
2 Collaborated on all CADTH patient input submissions for arthritis in 2020, including:

    • Feedback to the consultation questions on CADTH’s Proposed Alignment of Drug Reimbursement Review Processes from the perspective of people who live with arthritis;
    • Submission for filgotinib provided in collaboration with the Arthritis Society;
    • Submission for upadacitinib for the treatment of psoriatic arthritis (PsA) in collaboration with The Canadian Psoriasis Network (CPN), The Canadian Association of Psoriasis Patients (CAPP), the Arthritis Society (TAS), and the Canadian Spondylitis Association (CSA); and
    • Submission for anakinra for the treatment of Still’s disease and SJIA in adults and pediatric patients aged 8 months and older in collaboration with Cassie and Friends and the Arthritis Society.

Patient input submissions are posted on our website.

3 Participated in the research and training program by contributing to research and training grant reviews for the Canadian Institutes for Health Research (CIHR) Ontario and Saskatchewan SPOR Support Units and Seed Grants for the Evidence Alliance. 
4 Participated as collaborators on The Arthritis Society-funded research grants/projects. Participated and contributed to the work of the Canadian Pain Care Forum, that applies expertise in evidence-based medicine to identify, collate, review, revise, update and develop clinical practice guidelines for the treatment of chronic pain.

Five

Worked closely with other organizations.

Strategic Actions:
1 Remained active members of The Best Medicines Coalition. Numerous Steering Committee members participate actively in discussions related to the Patented Medicines Pharmaceutical Review Board regulation changes, and have contributed to consultations on Patient Engagement in policy development.
2 Worked with Health Canada by being a member of the Canadian Pain Task Force and participating in national consultations related to living with chronic pain. See above for more information.
3 Worked on patient input on the Common Drug Review for CADTH, as well as the parallel provincial agencies that solicit patient input and to encourage the expansion of the patient input process overall. This work was undertaken in collaboration with the Arthritis Society in 2020– see Section Four above for specific information. CAPA Vice-President had a workshop on patient engagement in health technology assessment accepted to the 2020 CADTH Annual Symposium that was postponed due to the COVID-19 pandemic. Our 2nd Vice-President presented at the virtual CADTH symposium about our efforts to support people with rheumatic conditions throughout the pandemic.
4 Continued to build our relationships with Arthritis Health Professionals Association (AHPA) and to disseminate information through the AHPA communications to members and the Canadian Rheumatology Association.
5 Built and enhanced existing and new industry partnerships.
6 Collaborated with and participated in Canadian Institutes for Health Research committees and initiatives. One Steering Committee member continued to be a member of the Canadian Institutes of Health Research’s Institute of Musculoskeletal Health and Arthritis Patient Engagement Research Ambassadors, another Steering Committee member is part of CIHR’s Citizen Advisory Committee.
Continued involvement with the Cochrane Collaboration.
8
Continued membership in the Better Pharmacare Coalition.
9 Remained on the Ontario Citizen Advisory Council and on the Patient Partner Working Group of the Ontario SPOR Support Unit and expanded reach of other groups such as Health Quality Ontario and local hospital groups, such as The Ottawa Hospital and Ottawa Hospital Research Institute.
10 Continued to participate as collaborators on research teams such as the Saskatchewan and Ontario SPOR Support Units’ projects, Outcome Measures in Rheumatology (OMERACT), and maternal health research projects, especially with respect to designing research questions that are important to patients and ensuring knowledge translation beyond the research community. Participated as members of the team that produced and delivered the Partners in Research web-based modules with researchers based at St. Michael’s Hospital (Toronto).
11 Continued to build relationships with the private payer community to ensure there is an understanding of arthritis, the importance of therapeutic options for patients, and the overall impact of arthritis on individuals in all capacities (at home, work, being a productive and functioning member of society).
12 Continued to engage with other patient organizations, both nationally and internationally, including:

    • CreakyJoints. We engaged in the Tumbler and Tipsy event by Michael Kuluva Spring/Summer 2021 Virtual Fashion Show Live Twitter Session which expanded our reach with our social media platforms. CAPA was also the Canadian Arthritis Partner for the multimedia video for the Tumbler and Tipsy by Michael Kuluva fashion show by having two Steering Committee board members be a part of this arthritis awareness video.
    • People with Arthritis and Rheumatism (PARE) and EULAR’s Patient Research Partner group CAPA’s 1st Vice-President attends EULAR’s Patient Research Partner meetings and will be contributing to their curriculum modules that are under development. We were invited to present at the EULAR 2020 virtual conference for our partnership on #ArthritisAtWork along with Simon Stones who is a UK based patient advocate at Creaky Joints.
    • CAPA’s 2nd Vice-President had been engaged in the work of the Canadian Institute for Health Information (CIHI)’s Patient Engagement Community of Practice and co-presented with Arif Jetha (Scientist, Institute for Work & Health) at the Disability and Work in Canada 2020 Virtual Conference in November 2020.
    • Irish Children’s Arthritis Network (iCAN). Working on a methotrexate tips and tricks sheet together.
    • ACTion Council. Participating in efforts to catalogue patient engagement in arthritis research.
    • International Alliance of Patients’ Organizations (IAPO). CAPA is a membership organization.
13 Engaged with Clinical Trials Ontario to provide input and feedback into resources developed in collaboration with patients, patient organizations and health charities (including their website and clinical trials finder).
14 Contributed to the Drug Safety and Effectiveness Network through one Steering Committee member being part of it.
15 Provided patient perspective in the peer review grant process for the Canadian Institutes of Health Research (CIHR) and also for its Strategy for Patient Oriented Research initiative.
16 Became an active member of the COVID-19 Global Rheumatology Alliance via participation in its Steering Committee and various patient working groups. Presented at the American College of Rheumatology about the Alliance’s work to date, please access the presentations here.
17 Contributed to the literature on patient engagement and the patient experience, including:

    • an article in the British Medical Journal (BMJ) about bullying in the patient community
    • a paper in BMJ on disability, entitled “Are intensive care triage protocols harming the disabled?”
    • an invited article in the Journal of Orthopaedic and Sports Injury Therapy (JOSPT) on compensation, entitled “Patients as Partners in Research: How to Talk About Compensation with Patient Partners”, building on the “how” to help alleviate the awkwardness of that conversation, allowing teams to co-develop projects and focus on the output and outcomes of their collaborative work.

Six

Executed CAPA-led projects.

 

CAPA successfully delivered on a number of its own initiatives in 2020. We plan to continue to build on these successes in the 2021 Strategic Plan outlined below.

 

Strategic Actions:
1 Continue to disseminate educational and support materials on living with arthritis and pregnancy and having a family, methotrexate, work and arthritis, and living with chronic pain, to the broader arthritis and medical communities, as well as to policy-makers.
2 Worked with iCAN to nearly finalize development of a resource based on survey results of children with arthritis and their parents. This work has been put on hold due to the COVID19 pandemic.
3 The English Together Enhancing Arthritis Management (TEAM) modules were updated and posted on our website. Provided an update to the CAPA community as well as various organizations that could benefit from these modules.
4 Continued to reach out to international arthritis organizations, to build relationships, work collaboratively and share resources and materials.
5 Continued to promote CAPA resources, including the Arthritis Patient Charter and position papers.
6 Continued to bring awareness to topics such as pain management, medical cannabis, medication safety during pregnancy/breastfeeding and other issues that impact people living with arthritis and require continued attention, advocacy and research.
7 Worked to increase community engagement with the research community – both in academia and industry.  Steering Committee members contribute to the Patient Focused Medicines Development initiative.
8 Started to develop a resource on aids and gadgets for daily living that have been tried and tested by people living with arthritis.
9 Launched a Medical Advisory Committee to guide CAPA formally from a medical perspective, and develop all associated governance and infrastructure materials for this Committee. The Medical Advisory Committee members are Drs. Cheryl Barnabe, Janet Pope and Carter Thorne.
10 Update the resource on pregnancy and parenting in partnership with health care professionals and disseminate to the arthritis community.
11 Created a resource that helps the public, decision-makers and policy-makers see how life with inflammatory arthritis has changed in the past two decades due to changes in treatment practice and therapies. The Arthritis Then and Now infographic is available on our website in English and French and for World Arthritis Day 2020, CAPA hosted a Tweetchat co-hosted by a Steering Committee member and Lene Andersen on the topic of #ArthritisThenNow. The chat has 38 participants, 495 tweets, and 4.25M impressions.
12 The planned project to help CAPA members understand the different organizations in the health policy and research landscape in Canada has been put on hold due to the COVID19 pandemic. Short videos will be created in collaboration with organizations such as CIHR, CADTH, CIHI, pCPA, PMPRB, Health Canada, and others and posted on the CAPA YouTube site.
13 Explored ways to diversify CAPA’s funding sources. In addition to industry funding, CAPA has secured donations and funding from academic organizations for project involvement and sharing research project participation opportunities with its members. Plans to engage various federal and provincial Ministries of Health with respect to funding were put on hold due to the COVID19 pandemic.
14* Started a video series to introduce CAPA’s Steering Committee members to its community. Two videos have been produced to date. Please follow the link to the video with Michael Kuluva.
15* Hosted CAPA Webinar on Disability Tax Credit (DTC), co-hosted by the Canada Revenue Agency representatives on Saturday, October 24, 2020. Participants were able to learn about eligibility criteria and how to apply for these credits. Two of our Board members participate in the Disability Tax Fairness Alliance.
16* Created a Flu Vaccine FAQ for people with arthritis.
  *These projects were not planned in CAPA’s original 2020 Strategic Plan.

Seven

COVID-19 related work.


Strategic Actions: Noting that none of these efforts were planned until the pandemic occurred: these all represent efforts that CAPA undertook on top of its planned work in 2020.

 

1 Created and kept a resource page up to date about COVID-19 for people who live with arthritis. This resource page was medically reviewed for accuracy.
2 Hosted a Tweetchat on May 9, 2020 on the “Lighter side of COVID-19” so as to bring some distraction and positive energy to the community. The Tweetchat was hosted by Steering Committee member Michael Kuluva and US-based CreakyJoints. We had over 80 participants and 728 tweets were sent. Click here to learn more.
3 Contributed to efforts of the entire Canadian arthritis community with respect to ensuring access to necessary medications for people who live with arthritis, given the initial thought that hydroxychloroquine might be a useful treatment for COVID-19. One Steering Committee was invited by CADTH to provide a patient perspective in the development of their evidence-based COVID-19 treatment page.
4 Partnership with the COVID-19 Global Rheumatology Alliance through the development and dissemination of the Patient Experience Survey. Involvement in identifying patient resources and developing lay research summaries for the improved understanding of patients with rheumatic disease globally.
5 Produced a video Q&A with a Steering Committee member interviewing Dr. Janet Pope about COVID-19 from the perspective of someone living with inflammatory arthritis.
   
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ourplan2021

We believe that CAPA has continued to deliver on its strategic plan and goals, and continues to achieve progress as a small, volunteer-based grassroots organization. Each year we further develop our own independent projects where we see gaps and opportunities for us to share resources and information with our community. Our plan for 2021 is outlined below.

 

ourpriorities

One

Maintain an active, effective organization

Strategic Actions:
1 Continue to fundraise to maintain current administrative needs and provide support for planned initiatives. Continue to diversify fundraising base.
2 Continue to develop policies as required.
3 Engage and grow the CAPA community.

Two

Continue to reach out and meet the needs of the CAPA community.

Strategic Actions:
1 As a virtual organization, we will continue to add new resources and information to our website in a timely way.
2 Continue to enhance CAPA’s social media profile.

Three

Initiate grassroots action.

Strategic Actions:
1 CAPA will continue to support community initiatives that are firmly aligned with CAPA’s interests and allow an opportunity for members to promote CAPA.
2 Continue to participate in the SPOR Chronic Pain Network and Evidence Alliance, providing the voice of people living with arthritis and pain throughout all Network activities.
3 Continue to engage with Health Canada regarding issues of importance to CAPA members.
4 Continue to engage in dialogue related to health policy and other issues of relevance to the CAPA community.

Four

Continue to work closely with our strategic partner, The Arthritis Society.

 

Strategic Actions:
1 Continue to meet with leadership at a national level, partnering in appropriate ways and providing patient input at many levels, and facilitating regional collaborations.
2 Develop joint strategies and take action on key projects where there are appropriate synergies.
3 Participate in the research and training program including as collaborators on Society-funded projects.

Five

Work closely with other organizations.

Strategic Actions:
1 Remain active members of the Best Medicines Coalition.
2 Work with Health Canada on critical initiatives.
3 Work on patient input on the Common Drug Review for CADTH, as well as the parallel provincial agencies that solicit patient input and to encourage the expansion of the patient input process overall. Submit at least one abstract to the CADTH conference.
4 Continue to build our relationships with AHPA and the CRA.
5 Build and enhance existing, and new industry partnerships.
6 Collaborate with and participate in Canadian Institutes for Health Research committees and initiatives.
7 Continue involvement with the Cochrane Collaboration.
8 Continue to be a member and actively participate in the Better Pharmacare Coalition.
9 Remain on the Ontario Citizen Advisory Council and on Council of the College of Occupational Therapy Ontario and continue to expand reach to other groups.
10 Continue to participate as collaborators on research teams such as the SPOR SUPPORT Unit projects, Evidence Alliance and where appropriate partnerships can be built and where meaningful engagement is ensured, especially with respect to designing research questions that are important to patients and ensuring knowledge translation beyond the research community.
11 Continue to build relationships with the public and private payer communities to ensure there is an understanding of arthritis, the importance of therapeutic options for patients, and the overall impact of arthritis on individuals in all capacities (at home, work, being a productive and functioning member of society).
12 Continue to engage with other patient organizations, both nationally and internationally, such as CreakyJoints, PARE, iCAN, International Alliance of Patients’ Organizations, and the COVID-19 Global Rheumatology Alliance.

Six

Execute CAPA-led projects.

 

CAPA successfully delivered on a number of its own initiatives in 2020. We plan to continue to build on these successes in the 2021 Strategic Plan outlined below.

 

Strategic Actions:
1 Continue to disseminate educational and support materials on living with arthritis and pregnancy and having a family, methotrexate, work and arthritis, and living with chronic pain, to the broader arthritis and medical communities, as well as to policy-makers. CAPA is participating with Canadian arthritis patient organizations on an awareness activity concerning the value of virtual care post COVID-19.
2 Work with iCAN to finalize development and begin dissemination of a resource based on survey results of children with arthritis and their parents.
3 Finish the update of the French Together Enhancing Arthritis Management (TEAM) modules. Update the medication module to include information on medical cannabis. Provide an update to the CAPA community as well as various organizations that could benefit from these modules.
4 Continue to reach out to international arthritis organizations, to build relationships, work collaboratively and share resources and materials.
5 Continue to promote CAPA resources, including the Arthritis Patient Charter and position papers.
6 Continue to bring awareness to topics such as pain management, medical cannabis, medication safety during pregnancy/breastfeeding and other issues that impact people living with arthritis and require continued attention, advocacy and research.
7 Work to increase member engagement with the research community – both in academia and industry.

Develop a reproductive health survey in collaboration with CSA, CPN, and CAPP for International Women’s Day. Co-develop and collaborate with these organizations in identifying patient needs and priorities relating to reproductive health and disseminating survey findings.

8 Develop a resource on aids and gadgets for daily living that have been tried and tested by people living with arthritis.
9 Update the resource on pregnancy and parenting in partnership with health care professionals and disseminate to the arthritis community.
10 Undertake a project to help CAPA members understand the different organizations in the health policy and research landscape in Canada. Short videos created in collaboration with organizations such as CIHR, CADTH, CIHI, pCPA, PMPRB, Health Canada, and others would be posted on the CAPA YouTube site.
11 Continue to explore ways to diversify CAPA’s funding sources.
12 Develop a FAQ about the flu vaccine. Start to expand this for other vaccines, including for COVID-19.

 

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