Share Care Council July 25, 2013

Agenda 1.Background 2.Proposal 3.Goals 4.Guiding Principles & Pledges 5.Name 6.Scope 7.Representation 8.Structure 9.Measurement 10.Budget

Background In 2011/12 the Mississauga Halton Community Care Access Centre (MH CCAC) initiated a Client & Family Advisory Forum project under Executive Champion, Jutta Schafler- Argao, as part of a suite of 24 strategic projects aimed at implementing the organization’s 2011/14 Strategic Plan objectives. The focus of the Client & Family Advisory Forum project was to examine leading practices that could be employed to actively engage clients and families in providing input into MH CCAC service evaluation and development. (Literature review and interview summary, October 2012) Co-leads Shelley Wetlauffer and Jannine Bolton completed a thorough literature review and facilitated interviews with leading organizations.

Proposal The report was brought forward to Executive Council in January 2013 and project implementation was transferred to Strategic Communications & Stakeholder Management. The proposal was further refined based on additional leading practice research into the benefits of advisory forum structures, including: Provides and effective mechanism for receiving and responding to patient and caregiver input Results in more efficient planning to ensure that services really meet patient and caregiver needs and priorities Leads to increased understanding and cooperation between patients, caregivers and MH CCAC Promotes respectful, effective partnerships between patients, caregivers and MH CCAC (Institute for Patient and Family Centered Care, 2002)

Proposal (Cancer Care Ontario, 2013)

Goals To create a forum in which patients and families have the opportunity to share their perspectives to: Strengthen the partnership between the MH CCAC and its patients and caregivers Ensure patient and caregiver needs are anticipated and inform service development and funding priorities Create an ongoing authentic engagement forum to give patients and caregivers a direct voice

Guiding Principles & Pledges Pledge: Families are involved and supported in caring for their loved ones Pledge: Our client and families trust they are receiving care customized to their needs Pledge: Clients and their families have a direct voice in our programs and services The focus of the forum are aligned to the strategic plan pledges under Client and Family Focus:

Guiding Principles & Pledges Work related to this forum will be linked to and build on local program development work to date Forum feedback will be shared broadly with formal leaders within the organization as appropriate to inform programs and services and deliver an exceptional patient experience. Forum will complement existing stakeholder and patient engagement strategies, including Heroes in the Home, System Partner Satisfaction Survey, Synergy West GTA, Client Caregiver Experience Evaluation (CCEE), Speakers Bureau and social media initiatives The guiding principles are informed by the Client & Family Focus pledges:

Proposed Name Patient & Family / Caregiver Advisory Forums are becoming more common in the sector, and the proposed naming for the Share Care Council is to: Position MH CCAC as a leader by identifying the essential “shared care” partnerships that exist with patients and family members Acknowledge that “caregiver” may be confusing to those outside of the health care sector (professional caregivers versus people who provide care for loved ones?) Acknowledge evidence that loved ones don’t self-identify as “caregivers” Ensure a descriptive brand that can be benefits-focused and avoid membership in its brand name A council is defined as a deliberative body of people assembled for some purpose and members are councillors.

Scope A clear and concise mandate will ensure a shared understanding of the objectives. Within ScopeOutside of Scope Recognition for member contributions Compensation for participation (with the exception of travel reimbursement) Future-focused perspectives Rear-view discussion of experiences, complaints and appeals Inform service development and delivery Advocacy ConsultationDecision-Making

Representation The forum will be comprised of individuals who are willing to represent the patients and caregivers in the MH CCAC community and engage in ongoing consultation. It will be comprised of a blend of both patients and caregivers. Membership criteria would be: 18 years or older Member of the MH CCAC catchment area Current or former MH CCAC service recipient or patient caregiver (within the previous 24 months) Willing to commit to 18 months of participation Represent diverse cultural and multifaith populations within MH CCAC catchment (excludes language diversity at this time due to cost implications)

Representation Recruited patient representatives will be aligned with the patient populations identified in the Client Care Model. Client Services will identify: Five patients per population across the three regions (Central, West, East) Six caregivers (Three full-time and three part-time). Please note we do not anticipate a correlation of experiences to the CCM structure for caregivers. A maximum of 18 members will be recruited.

Representation Permanent organizational representation will include: Vice President, Client Services Director, Client Services Programs (vacant) Director, Strategic Communications and Stakeholder Management Executive Assistant, Executive Office Leading practice research indicates that staff membership be comprised of 4 permanent members in the forum. Other staff may be invited to attend depending on the topics of discussion.

Structure The proposed structure of the forum will include: Pre-communication by telephone and Annual launch (in-person engagement) Technology enabled teleconference Second in-person engagement Technology enabled teleconference /letter updates as required Members will be invited to renew membership after 12 months at which time new membership will be recruited to fill vacancies. This will ensure continuity and sustainability of the forum.

Measurement The proposed evaluation of the forum will include: Meeting evaluations to ensure member engagement and ensure that relevant topics are being discussed Ensure that results are evident within the first year It is anticipated that one measure of success would be member willingness to renewal for an additional term

Budget It is estimated that this forum would cost $15K for the first year. The break down would include: Facilitation $5,000 Location and catering $4,000 Travel reimbursement $2,500 Technology $2,000 Certificates $500 Other $750

Questions