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Sustain: CCO's PFAC Experience
 
“I think it’s been an exciting ride this past year, we’ve figured out what works, and what doesn’t, and how to make things better.”
– PFAC staff member

CCO "PFACts"

  • As part of the research study, council members were asked to journal about their experiences with the council after each council activity, i.e., training, council meetings – journals were collected and reviewed by research staff
  • In addition, council members were asked to provide their reflections in response to surveys and interviews after each council activity
  • Council members were asked to suggest ‘Even Better If’s’ at the end of each council activity (including each council meeting)
  • Organizational and research staff met after each council activity to discuss observations and lessons learned
  • An invitation to join three working groups was circulated to all members including the anticipated time commitment, details about meetings, past meeting minutes and current membership of the group

Questions that came up

  • How can we formally recognize the contributions of PFAC members?
  • How can we introduce council members to organizational committees for mutual benefit?
  • How do we report on the progress and contributions of the PFAC to the rest of the organization? To what purpose?
  • What progress is being made with the PFAC? How can this be measured?
  • How do we know our efforts are successful?
  • How can we provide mentorship to council members? (and organizational staff)
“How do we engage people going forward? What’s the commitment of time and energy?”
– PFAC Co-chair

Lessons Learned & Recommendations

Evaluation and feedback

Critical to the success and sustainability of the Council is attention to evaluating the effectiveness.  Both from an organizational viewpoint and the members, we need to understand what is working or not; address the feedback and attend to changes to improve the process, structure and outcomes.  We use a variety of evaluation methods: interviews of members, surveys, questions posed at the end of each meeting. 

Identification of indicators of engagement and participation is important; but there are few indicators that have been developed and used consistently. There is minimal literature written about useful indicators that can be applied to measuring the council activities. However, there are opportunities for new and emerging councils to contribute to this knowledge by developing an evaluation framework and measuring their activities along the lifecycle of the council. Organizations may use qualitative research methods and conduct in-depth interviews with council members to learn more about their experience on the council.

Interviews could address a variety of issues, including:

  • Overall rating of their experience on the council
  • Quality and adequacy of the orientation training provided to members
  • Degree of influence of council members’ views on final recommendations or outcomes of discussions

Complementing the qualitative data collected through interviews or other means with quantitative data can help to present a more comprehensive analysis of the process. Quantitative data may be collected through paper or online surveys or be collected by calculating various metrics, such as:

  • Number of council members, representing various patient groups/regions/etc.
  • Number of council members engaged in other activities within the organization
  • Number of members who chose not to remain on council

Engagement in other activities

As the knowledge and understanding of the Council evolves in an organization, there are more opportunities to engage members in activities. Working groups that focus on specific initiatives or projects are additional ways to engage members outside of the Council meetings.

For example, members of our Council participate in working groups related to navigation, measuring the patient experience, patient reported outcome measures; and have been invited to join committees or consult with groups for example in developing patient pathway maps, or assessing user acceptability of an electronic method to collect patient reported symptoms. The benefit of engaging in other activities, that is, other than council meetings, is that the members are well engaged in the work of designing change, using their experience to improve quality.

Special Circumstances to Consider

An important area to consider is the notion of the impact that patient and family advisors face when a member becomes ill, or experiences a crisis, such as a death in the family. There is little written in the literature that outlines strategies or effects on Patient and Family Advisory Councils when one or more members experience return of illness, such as advanced cancer or second cancer diagnosis, or the death of a family member. In our experience this situation requires sensitivity, and meaningful communication that supports the members, allowing them to express their concern or shared grief, while supporting the member through their experience.

Examples of events that caused increased stress and concern for the patient and family members, as well as staff members on the Advisory Council were:

  • Recurrence of cancer diagnosis and need for more treatment
  • Death of member of the immediate family

Given that our Council members are survivors or family members, we anticipated the potential of recurrent disease and need for more treatment. In these cases, we acknowledged that a member was ill, and required more treatment, being careful only to provide information that the member was comfortable sharing. In discussion with the members, the option of remaining on the Council and participating as they felt reasonable was presented. One member resigned; another remained on the Council, but limited participation to the level of her comfort. Both situations were accepted by the members.

Sadly, two of the members faced deaths of immediate family; in one case, a son; in the other case, a mother. In these situations the Co-Chair provided information to the Council members, allowing each to express their concern for the individuals, sharing a card of condolences, and offering support to the individual.  The option of resigning the Council or staying on and participating to the degree the individual felt comfortable was offered. In both cases, the individuals took time away but returned to participate at their own pace. 

The third example was one where a member had completed her treatment two years before joining the Council; but at the end of the first year of participating, realized that she needed to address some ongoing psychosocial issues related to her experience.  She opted to resign and asked that the members be advised why she chose to resign at that time (and her words were used to offer the information). 

Could these circumstances be anticipated? Clearly, given that the members are cancer survivors, we anticipated that one or two might face a recurrence, given the nature of the disease. Should that be a factor in the recruitment of members? One needs to weigh the reasons why the Council was formed: to offer their advice to improve the experience and participate in system design.  There is no ‘screen’ to know who might have a recurrence. It is not reasonable to deter individuals to participate because of the potential ‘what if’ this recurs.

Our conclusions were to address these circumstances as they occurred; to be as open and honest as the members who were affected allowed; to share the concern, grief and offer support to all the members; and to acknowledge feelings by providing opportunities to express concern and deal with the stressors.

Last modified: Thu, Dec 27, 2012
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