Embedding an informed patient and caregiver perspective across the cancer control continuum.

A foundational initiative of the CCAN since 2008, the Stakeholder, Membership and Public Engagement file is a continuation of the role CCAN plays in helping to embed an informed patient and caregiver perspective to work underway by engaging the Canadian patient community in the acceleration of the national cancer strategy. In 2014-2016, this initiative will focus on providing CCAN member organizations with access to a series of virtual training modules focusing on key operational areas:

1. managing virtual teams
2. optimizing virtual team meetings
3. creating team operating agreements

Informed dialogue leading to concrete action for all Canadians.

Linked to the outputs of the 2013 stakeholder meeting, ‘Canada, a Caring Society: Action Table on Family Caregivers,’ and continuing to work closely with key stakeholders and partners, the Family Caregivers in Canada project “Mobilizing Action: Family Caregivers in Canada’ is a collaborative initiative focused on defining and advancing recommendations specific to four identified themes:

1. enhanced awareness
2. improved access to resources
3. flexible workplaces
4. better understanding of government programs

Guided by a National Steering Committee, and informed by a Caregivers Advisory Group, action points will be developed to address key elements and advance the implementation of a Canadian Caregiver Strategy.

Building momentum by putting patients and caregivers first.

“Family caregivers across Canada know firsthand the core issues that impact their lives daily. From issues specific to the reality of financial burden on a family unit, to the growing need for additional support and access to resources in urban, rural and remote communities, family caregivers are looking to organizations such as ours to lead the way toward measurable and sustainable change. The time for change is now.” Marjorie Morrison, CEO

Leveraging relationships to mobilize multi-jurisdictional stakeholders to action.

Drawing on firsthand caregiver experiences shared during a 2013 consultative session, ’Family caregivers and childhood cancer: Understanding the issues and concerns impacting caregivers of children,’ MOSAIICC (Mobilizing Opportunities to Systematically Address Issues Impacting Caregivers of Children – Phase 1) is a project reflecting a growing understanding that Canadian families often experience unique and significant levels of financial hardship related to the immediate and ongoing care of their child with cancer.

In the next year, MOSAIICC seeks to advance work in four areas of focus:

1. survivorship
2. access to information and resources
3. psychosocial needs
4. programs and/or services

Moving from dialogue to practice.

Working closely with the Canadian Partnership Against Cancer, as well as the Quality End-of-Life Care Coalition of Canada, the Person-Centred Perspective initiative is an initiative drawing on existing tools and resources specific to advance care planning in rural, urban and remote communities.

Through a collaborative approach, CCAN will work key stakeholders to:

1. help further advance the Quality End-of-Life Care Blueprint for Action
2. increase patient and caregiver engagement in work linked to palliative, end-of-life care and advance care planning
3. implement a CCAN Advance Care Planning Model for member organizations and their respective constituents

Working collaboratively in support of Canadian patient advocacy groups.

The Health Technology Assessment initiative is a continuation of the collaboration between CCAN and the pan-Canadian Oncology Drug Review. Drawing on the identified need for Canada to introduce a Patient Health Technology Assessment (HTA) Navigator to work closely with the Canadian patient community, and is a natural “next step” to ’A Guide for Patient Advocacy Groups: How to provide patient and caregiver input for a pCODR drug review’ released jointly in late 2013. Further, this initiative also supports the engagement of CCAN at the 2014 Union for International Cancer Control World Cancer Congress in Melbourne, Australia with delivery of an e-Poster abstract (co-authored by James Gowing and Marjorie Morrison) entitled, ‘Improving Cancer Patient Outcomes: How Patient Engagement Systematically Informs a Uniquely Canadian HTA System.’