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Communicate: CCO's PFAC Experience
“We need to remember that the members of the council are coming in with a completely blank slate, they don’t have the history that we have and they don’t necessary have the perspective that we have. So it’s a reminder to really make your material appropriate for your audience”
– PFAC staff member


  • all documents listed above were created and distributed to council members (including staff)
  • all council members had email accounts however some did not access them daily (weekly or bi-weekly)
  • some council members had access to a printer, either through work or at home, some requested that a hard copy of meeting materials be sent to them prior to the meeting
  • the research analyst involved in the study connected with each council member by phone during the initial communication phase – to ensure all questions were addressed and that travel arrangements were handled properly

Engagement Across a Spectrum

Health Canada has developed a public engagement continuum that outlines how engagement activities and the degree of involvement and influence may vary. For more information on this continuum, please see the “Health Canada Policy Toolkit for Public Involvement in Decision Making”, available online at

Questions that came up

  • How much information should we provide to council members ahead of time?
  • How much input should we get from council members about the agendas for meetings?
  • What are the best ways to ‘prepare’ council members to serve and participate on council, both patients and staff?
  • How do we manage lower levels of comfort with technology, particularly with a provincially-based council? (where electronic distribution of information seems easiest) 
  • How can we help staff members to engage most effectively with patients? 
“To really engage patient and family advisors all along the way on a much more frequent basis, by sending them information, by asking for their advice. It shouldn’t just be around the meetings of the council. There are other pieces of work that they really want to be engaged in. And we need them to be engaged in."
– PFAC Co-chair

Lessons Learned & Recommendations


  • use plain language in all written and verbal communications
  • avoid: medical jargon, technical terms, acronyms or abbreviations


  • designate a point-person from the organization to handle all incoming/outgoing communications with council members (patients and staff)
  • once the council meetings/training have been initiated, establish optimal communication methods with the council members according to their preference and feasibility (email, phone, hard-copy information, online forums)
  • distribute council meeting/training information at least 2 weeks in advance to allow for consumption and questions

Ensuring Understanding:

  • review all council documentation with council members to ensure understanding and allow for any clarification required (i.e. terms of reference, council objectives, organizational structure, etc.)
  • Experiential Learning
  • providing more time and space for strategic storytelling and personal sharing among Council members allows them to learn
  • organizations should consider developing a way for Council members to communicate and connect with each other between Council meetings and for the purpose of sharing and peer support.

Goals and Objectives:

Clear goals and objectives are essential for patient and family advisor and for staff. Consider one goal to achieve. For example, the goal might be to improve patient navigation. The objectives might include:
  • create patient maps
  • test the feasibility and design of the maps
  • implement the maps with specific groups
  • evaluate the patient experience with maps

The patient and family advisors take the role of commenting first on the concept of a patient map.  While the staff members develop the content elements, the advisors review the language and graphics to feedback whether the maps ‘make sense’ and are useful.  The advisors are the experts, not in design, but in whether the strategy will work, what content is most important and what other elements are required.

For example, we brought the patient map concept to our council. The members thought the concept was good; they met with staff in small groups and commented on specific elements. The staff did the writing and graphic design, and the members reviewed the documents at each stage. The success of the initiative was largely due to patient and family members’ involvement all along the way, at each interval, up to and including evaluation.

Terms of Reference:

Organizations know how to write Terms of Reference for committees. Important elements include:

  • Mandate or purpose
  • Functions
  • Membership and term of membership, and replacement of vacancies
  • Chair/co-chair role and selection
  • Reporting and accountability
  • Frequency and length of meetings
  • Roles and responsibilities of members

Confidentiality and rules of engagement:

Health care organizations expect staff to respect confidentiality of patient information or documents that may be developed or discussed in the context of work. At the same time, patient and family members who are selected to be on the Council should be asked to respect the confidentiality of the discussions and documents that are brought to the members’ attention. It is important at the outset, that each member sign a confidentiality agreement.

Rules of engagement: In a similar vein, members of council need to understand that they do not represent, or speak on behalf of the organization. They do not have a public role to play, although from time to time, they may be invited by the organization to attend specific forum to share their opinion or experience.

For example, members of our Council have been invited to speak on a panel presentation at the Annual General Meeting and at the launch of the Cancer System Quality Index.  Prior to the sessions, the individuals met with the Public Affairs staff to prepare them for each panel and received support to participate. Neither member had prior experience in public speaking; hence staff provided guidance and support that enabled the person to speak with confidence. The members received travel and accommodations that enabled them to attend the event.

Scope of the Council’s work: in-scope and out-of- scope:

Carefully defining the scope of the council’s influence and decision making is required. As advisors, the members serve a function to review, engage, collaborate and offer perspective that then needs to be taken into consideration for system change. However, there are decisions, such as running programs, determining where resources are to be committed, that are not the responsibility of patient and family advisors; these are operational decisions. It is therefore important to distinguish what is in or out-of-scope for the work of the council.

For example, in our scenario it was clear that decisions about which drugs or treatments would be funded is the role of the organization, and that the council members would not be engaged in any decisions related to treatment. The members understood that the organizational responsibilities were mandated and clear and that they had no influence in this area. By clarifying the distinction in roles, the council then focused on areas they could influence, such as navigation of the journey.

Iterative Loop: Seeing the End Results

Early in committee formation a clear method of communication has evolved. We view this communication style as central to ensuring the success of the council. An iterative process has emerged in which challenges (content, process and role) are raised by council members and solutions are initiated. Implementation of solutions includes discussion of the solutions with Council members either at the following meeting or virtually through email. This ongoing communication ensures that a feedback loop is in place to ensure that not only are problems addressed, but that all members know how and why they were addressed. The figure below presents a graphic representation of this iterative communication style.

Interactions and Re-adjusments throughout the Engaging Survivors Study - August 2011

Last modified: Thu, Dec 27, 2012
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