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Plan: CCO's PFAC Experience
“What are your goals, what do you want to accomplish, how are you really going to encourage people?” – PFAC Co-Chair


Internal Resources:

  • 0.5 dedicated CCO project coordinator planned and coordinated events (an estimated 24-30 hours of time per month is required); 0.5 UHN research analyst created supportive material
  • Members of the CCO PFAC were recruited from 14 regional cancer centres in Ontario – a site coordinator was established at each centre to identify potential council members and introduce them to the CCO/UHN team


  • A detailed project plan was made available to all CCO and UHN resources via a secure folder on Google Docs ( )
  • Monthly update meetings were held with key stakeholders, bi-weekly status meetings were held with CCO project coordinator, UHN research manager and analysts

Lessons Learned:

  • Team meetings were scheduled monthly to de-brief council meetings and to capture learning to date

Questions that came up

  • Does the PFAC require a full-time project manager or coordinator?
  • If related organizations are involved, how much of their input is required?
  • How do we create the PFAC without exploiting patients and family for their time and shared experience?
  • How much time is required to obtain agreement from stakeholders, recruit council members, and make preparations for training and initial council meetings? Can any of these activities overlap each other?
“I would encourage any new councils to start with patients stories, that that’s a wonderful place to begin. It makes people feel heard. We need to be heard.”
– PFAC member

Lessons Learned & Recommendations

Internal Resources

  • A designated point-person is recommended to handle all incoming inquiries and coordination for council members and related organizations


  • Document all tasks associated with each activity (recruitment, training preparation, council meetings), share electronically and review with relevant parties at regular intervals to ensure potential planning issues are addressed as they arise (i.e. understanding the organization’s expense reimbursement policy before speaking to council members)

Operating budget to support the Council

There are costs to the implementation of a Council. Costs include:

  • travel and accommodation for patient and family advisors
  • meeting venue
  • catering
  • printing of materials
  • virtual communication such as the use of video conferencing for members
  • other costs

It is important to determine the all the relevant items, costs associated with the work and communication, and create an annual budget that the organization supports.

Some organizations determined that a stipend or honorarium is paid to Council members. There are pros and cons to the concept of paying members to participate. If the decision is to provide a stipend or honorarium, these costs need to be added to the budget. Our Council members receive reimbursement of out of pocket expenses for participation (travel, accommodations for example) for each meeting.


Patients and family members may not have the skills to participate as effective members of a Council.  While they might have experience on a committee—such as a school or sports committee for their children, or a committee at work—being a member of an organization’s council is a different entity.  Therefore, it is critical that members receive a thorough orientation that includes, at a minimum:
  • information and knowledge of the organization (mission, vision, strategic plan etc.)
  • information about the purpose of the Council
  • factors that are required, such as non-disclosure and conflict of interest
  • areas of work on which the council will be asked to advise
  • fundamental group skills

Our organization created a handbook to provide preliminary information; and followed up with two day orientation to the work of the council. Included in the orientation is dedicated time for patients and family members to share their stories in the context of why they want to participate on the Council, and what they hope to contribute. The stories are an excellent way for the staff members to begin to understand the experience and what areas might need to be addressed in some priority.

We engaged advisors in the development of the orientation program and the materials that were drafted for new members. Engaging the advisors was most valuable; their advice guided the content and format changes to orientation.

Although there has been work done to develop staff engagement with advisory and other groups, we recognize the importance of building support and “buy-in” from staff from the outset of patient engagement activities. Including staff on the Council is a more effective way of both ensuring staff “buy-in” and reassuring PFAC members that their commitment is not viewed as tokenism but is in fact valued by the organization.

To be most effective, an organization should deliberately plan and provide staff orientation. Orient staff on how to present, what methods to engage the council members, and ways to prepare the council to give advice. We have developed a preparation package for staff interested in working with the PFAC.

Last modified: Thu, Dec 27, 2012
cancer care ontario | action cancer ontario   620 University Avenue Toronto Ontario, Canada M5G 2L7   Phone: 416.971.9800 Fax: 416.971.6888

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