Integrating PWLE into Governance and Operations

• Does our organization currently have seats for PWLE on the governing board?
  • If no, what steps could be taken to explore creating seats for PWLE?
  • If yes, how are we currently supporting PWLE serving on our board and how could we improve our practices?
• Does our organization currently have seats for PWLE on key committees?
  • If no, which committees would benefit the most from participation from PWLE?
  • If yes, what do we know about the experiences that PWLE have on these committees? How can we enhance their engagement and impact?

• Designates seats for PWLE on the organization’s governing board. Positioning PWLE in governing roles is one of the most visible and powerful ways an organization can demonstrate its commitment to true partnerships. Doing so embeds perspectives from PWLE directly into decision-making and ensures their insights shape organizational priorities. In most cases, support from the executive leadership team is necessary to revise bylaws or adjust governance structures to formally require seats for PWLE.
• See Engaging executive leaders for strategies on securing buy-in.
• Designate seats for PWLE on organizational and governing committees such as policy, finance, performance management, quality improvement, or research, creating direct opportunities for them to influence and oversee strategic initiatives.
• Create a clear process for appointing or selecting PWLE for these roles by:
• Leveraging advisory councils as pathways. Some organizations create pathways through existing councils, such as community advisory groups or Patient and Family Advisory councils (PFACs). For example, a PFAC chair may also serve on the Board of Directors.
• Identifying essential skills and competencies for PWLE in governance. When PWLE serve in governance or committee positions, it is important to clarify the  skills, experience, and competencies needed. Requirements should not be overly stringent so as to limit diversity, but may include:
  • Potential and interest in taking on leadership roles
  • Ability to contribute actively while respecting different viewpoints
  • Capacity to speak from a broader perspective rather than a solely individual experience
  • Willingness to learn about organizational processes, structures, and data

Stephanie Burdick, a person with lived experience, discusses her experience serving on organizational governing boards.

National Health Care for the Homeless Council’s (NHCHC)  Evolution of the National Consumer Advisory Board: A Case Study in Consumer Leadership provides a summary of how the National Consumer Advisory Board began.

NHCHC designates seats for PWLE on the organization’s governing board and key oversight committees.

“We have a number of committees and we make sure each of them has consumer representation on it––for example, the policy committee, administrative committee, and finance committee. About five years ago, we changed our organizational bylaws to ensure that a minimum of 20% of board members are people with lived experience of homelessness. And I’m pleased that we’ve exceeded that target every year. For two of the last five years, board presidents have been people with lived experience of homelessness. We really try to take that seriously and try to model what we want our larger community to be doing.”

Community Care, a Behavioral Health Managed Care Organization, has bylaws requiring that program members compose one-third of their board of directors and does the work to prepare them. The Board is also supported by a diverse Community Advisory Board who are committed to public-sector work. This Community Advisory Board is composed of family members, individuals who utilize behavioral health services, community leaders, mental health and substance use disorder treatment advocates, and providers.

• To what extent does input from PWLE directly shape how we deliver care or provide services?
• Is our work with PWLE sustained by specific staff members or is it embedded in organizational processes and policies?
• To what extent have we documented processes that ensure input from PWLE reaches decision-makers across our organization?

• Embed PWLE engagement into organizational operations. When PWLE are fully integrated, their involvement is sustained and not reliant on a single person or small group of champions. Engagement becomes part of how the organization conducts business.
• Leverage both processes and policies to support PWLE involvement. Beyond the involvement of PWLE on governing boards and oversight committees, there are two complimentary routes to consider implementing:
  • Processes that facilitate and encourage the ongoing involvement of PWLE
  • Policies that require the input  of PWLE, such as mandating that all new initiatives include a plan for incorporating perspectives from PWLE
• Connect input from PWLE through multiple channels by identifying appropriate engagement structures and communication processes such as:
  • Patient and Family Advisory Councils (PFAC) (or other similar committees that include PWLE) that provide input on program development, practice change, and the review of patient-facing materials
  • Meetings and consultations with community groups or leaders (e.g., tribal communities) to ensure inclusion whenever a project, policy, or decisions may impact their community
  • Committees or workgroups with designated slots for PWLE, such as committees that review patient grievances
• Identify gaps to enable deeper engagement. Assess the extent to which PWLE serving on boards and committees really have direct influence on care and service decisions. Identify and work to address gaps such as power imbalances that impede influence, PWLE not having necessary context to weigh in meaningfully on decisions, or group dynamics that inhibit open communication.
• Facilitate and encourage engagement pathways. To ensure that engagement with PWLE is integrated and sustained, organizations should create documented processes that facilitate and encourage involvement of PWLE. Approaches can include:
  • Request forms that allow staff across the organization to submit ideas and opportunities for PWLE contribute throughout  projects lifecycles
  • Outreach by staff who lead work with PWLE to educate teams about committees and other avenues for incorporating input from PWLE
  • Recognition and incentives for staff who engage PWLE in their work
  • Hiring staff with lived experience (e.g., Community Health Workers and Peer Specialists) and intentionally involving them in planning and decision-making processes.

Community Care describes their model of governance as one based on openness, inclusivity, and accountability. They recognize the importance of involving partners and members “in every level of governance and administration.” To ensure that members and their families can access effective, responsive care and are active participants in service and quality improvement initiatives: Community Care has two corporate-wide boards – the Family Advisory Board (FAB) and Member Advisory Board (MAB) – as well as local Member and Family Advisory meetings held in the communities they serve. The FAB and MAB consist exclusively of Community Care’s members and families who provide feedback and suggestions for improving provider services, developing programs, increasing member satisfaction, and providing member education resources.

• Do we have essential processes for supporting PWLE that could be formalized into organizational policies?
• Are there areas where our work with PWLE is inconsistent that formalized policies could help to standardize?
• Who at our organization is involved in formalizing policies and what does this process entail?

• Define and formalize processes and policies needed to support the engagement of PWLE. These include:
  • Create structured onboarding that prepares PWLE for their roles: documented processes and policies specify when and how onboarding will occur and what information will be provided (e.g., information about roles and responsibilities; expectations for participation; organizational structures; how the organization makes decisions and what areas are within its sphere of influence; strategic priorities and goals; organizational funding mechanisms; data used to inform improvements; and specialized terminology and definitions).
  • Provide ongoing training to support PWLE to build skills and confidence: Documented processes and policies specify how ongoing training will be provided, including capacity-building for PWLE to develop skills related to leadership, research, facilitation, writing, and public presentation.
  • Offer mentorship and support to strengthen participation and reduce barriers: Documented processes and policies specify how the organization will support participation in committees, workgroups, and meetings, through:
    • Preparatory sessions to review agendas, discuss specific opportunities for input, and provide context on complex subjects
    • Post-meeting debriefs to answer questions and identify ways to enhance future participation
    • Formal or informal opportunities to connect with other PWLE who act as peer-mentors (typically pairing people with significant experience working with the organization with people who are new to their role)
  • Develop clear compensation guidelines: Documented processes and policies outline how the organization will provide financial resources (e.g., stipends, honoraria, and other forms of payment) and define:
    • Eligible activities for compensation and reimbursement
    • Recommended rates based on time, responsibility, and parity with consultant payments
    • Internal payment procedures and required documentation (e.g., W-9s)
    • Available payment methods (e.g., check, direct deposit, and prepaid visas or gift cards)
    • Expected processing timeline and a point of contact for questions
    • See: Supporting Participation for additional information on compensation practices
  • Adopt accessibility standards that address barriers to participation: These documented processes and policies help reduce barriers by providing support to PWLE such as child care, transportation, language access services, and other needs as identified by PWLE to ensure equitable participation.
  • Promote psychological safety and respect to counter power imbalances. This includes documented processes that create welcoming, inclusive environments and counteract potential power imbalances (e.g., use first names rather than titles, avoid acronyms and jargon, and set aside time for relationship-building so everyone is known as a person, not just their role).

Community Care has documented processes and policies to ensure PWLE feel supported and comfortable in their roles.

“[For PWLE,] we have a document that says, here’s what our board’s all about, here’s what we will do to support you, and here are our expectations of you in this role. On the front end, it clearly spells out what’s involved. And if they want to, we would go on with an orientation to the board. We have two co-chairs for our Member Advisory Board, and we try to let our co-chairs do the leading. They’ll reach out to the members to help them feel comfortable coming to that first meeting, because it can be a little nerve-wracking if it’s not something you’ve ever done before. We do everything we can to make the individual feel comfortable. We talk to them about, ‘There’s no such thing as a dumb question,’ and just encourage them to speak their minds. That’s really what we encourage more than anything, is just share your experience. That’s exactly what we want to hear from you.”

HealthierHere provides stipends for community members to be involved on the board, which honors and respects the time that this takes. And then, they provide training and onboarding to make sure that our community and tribal members have what they need to be effective and to feel well supported when serving on these different groups.”

National Health Care for the Homeless Council (NHCHC) offers training to members of their National Consumer Advisory Board (NCAB), which is composed of people who have experienced homelessness. For example, members of the NCAB have received training to help them understand the value of research and how research works. NHCHC’s policy team also provides training for NCAB members related to advocacy to make sure that NCAB members are informed about new policies and programs.

Camden Coalition has an organizational policy related to covering costs for personal caregivers who travel with PWLE to events, conferences, and meetings.