Engaging Cancer Survivors to Care

Collaborators: University of Toronto, Canadian Health Services Research Foundation (CHSRF) and Cancer Care Ontario (CCO)

In this intervention project, there are two objectives. The first objective is to create a new Patient, Family and Caregiver Advisory Council with individuals representing the regional cancer centres across Ontario. The goal of the committee will be to:

a) guide long-term development of a patient measurement and improvement strategy and
b) act as an internal expert forum.

The participants will be invited to take part in a 2-day training session with standardized actors who will expose them to tailored scripted scenarios developed to create the essential skills for optimal participation in the Council. Following the training session, participants will be invited to take part in 4 committee meetings. Qualitative and quantitative data will be collected from participants and analyzed by members of the research team.

The second objective is to create a toolkit of materials to support the creation of other PF and C Advisory Councils. This toolkit will be shared with other institutions wishing to engage patients in advisory councils as a means to improve the patient experience with health services. Finding of this research will also be disseminated through publication in scholarly journals for the benefit of the scientific community.

Rationale

This project will use best practice methods for patient education and health professional training to create and engage a provincial Patient Advisory Council that will potentially influence efforts to improve the patient experience during the cancer care journey. Membership into the Council will provide patients with the opportunity to participate in the design, delivery and evaluation of interventions created to improve understanding of the issues being deliberated, patient training and role clarification.

Expected Outcomes

We expect short, medium and long term outcomes related to this study.

  • Short Term: Council members as skilled advisors, confident decision makers, consensus builders
  • Medium: Mutual engagement of council members and decision makers
  • Long Term: Create documentation (e.g toolkit) for dissemination of leading practice in patient engagement at the provincial level

In addition, information gathered from surveys, focus groups and interviews will provide an understanding of the barriers and facilitators to conducting public engagement in the healthcare setting.

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