Patient & Family Advisory Council (PFAC) Setup Kit

Welcome

This setup kit helps teams start a Patient & Family Advisory Council (PFAC) that genuinely partners with people who receive care. It balances practical startup steps with protections against tokenism and poor follow‑through so PFAC recommendations are tracked, acted on, and evaluated.

Why a PFAC?

PFACs bring lived experience into service design, reveal hidden pain points, improve communication and trust, and generate practical improvements in safety, access, and experience. Clear scope, inclusive recruitment, explicit roles, and governance integration turn input into action.

Mission & Scope (Template)

Use this short template to state purpose and boundaries for your PFAC.

Mission: "Advise and partner with our organization to improve patient- and family-centered care, safety, and experience through constructive feedback, co-design, and review of key initiatives."

Scope: Provide input on policies, care pathways, communications, signage, discharge processes, and specific improvement projects. Not a complaint resolution forum—include referral pathways for individual concerns.

Recruitment & Diversity Considerations

Recruit broadly and deliberately to reflect the population served. Consider age, language, race/ethnicity, disability, payer mix, care setting, chronic conditions, rural/urban status, caregiver status, and recent experience with your services.

• Eligibility: Adults and family members with recent (within 18 months) experience; representatives of community groups; advocates with diverse perspectives.
• Outreach channels: Clinic teams, discharge coordinators, community partners, translated flyers, social media, partner organizations, faith-based groups.
• Barriers to participation: Offer flexible meeting times, virtual options, childcare stipends, transportation support, language interpretation, and accessible meeting locations.

Recruitment script (phone/email):

"Hello—my name is [X] from [Organization]. We are forming a Patient & Family Advisory Council to partner with us on improving care. Based on your recent experience, we’d value your perspective. Meetings are [frequency], and we provide [compensation/transportation/interpretation]. Would you be interested in a short conversation to share more?"

Role Descriptions

• PFAC Chair (patient/family representative): Co-leads meetings, helps set agenda, represents member voice, supported by staff liaison.
• Staff Facilitator / Liaison: Prepares materials, follows up on actions, connects PFAC to operational owners, maintains confidentiality safeguards.
• Members: Attend, contribute lived experience, review materials in advance, participate in small working groups as needed.
• Executive Sponsor: Senior leader who receives PFAC recommendations, provides authority to act, and ensures integration into governance.

Starter 6‑Month Charter (Example)

Objective: Establish a functioning PFAC and complete two early projects that demonstrate impact.

1. Months 1–2: Recruit 8–12 diverse members, hold orientation, finalize mission and ground rules.
2. Months 2–3: Identify 2 priority projects (example: simplify discharge instructions; improve signage to key clinics).
3. Months 3–5: Co-design solutions in working groups; pilot small changes.
4. Month 6: Present recommendations to governance, capture decision and next steps, and publish a short public summary of outcomes.

Sample Meeting Agenda & Facilitation Tips

Typical 60–90 minute agenda

1. Welcome, land acknowledgement (2–5 minutes)
2. Check-in / brief personal update (5–10 minutes)
3. Review agenda and minutes, accept (5 minutes)
4. Action follow-up: brief status updates (10 minutes)
5. Focus topic / co-design workshop (30–40 minutes) — use breakout groups if large
6. Decisions & next steps: name owners and due dates (10 minutes)
7. Close with gratitude and any housekeeping (5 minutes)

Facilitation tips: circulate materials 5 days before; use plain language; assign a notetaker; name a timekeeper; explicitly invite quieter members; summarize decisions and owners at the end.

Ground Rules, Confidentiality & Privacy

• Ground rules: respect, speak from experience, avoid clinical advice to other members, allow turn-taking.
• Confidentiality: PFAC is not a substitute for clinical consultation—personal health stories may be shared for context but identify and redact personal identifiers if notes are shared externally. Establish clear rules about sharing member stories and obtain consent for published quotes or stories.

Compensation & Accessibility

Compensate members for time and expertise when possible. Options: honoraria per meeting, gift cards, parking reimbursement, transit vouchers, meals, or childcare stipends. Make accommodations: interpretation, captioning, physical accessibility, flexible attendance options.

How to Integrate PFAC Recommendations into Governance

Create a simple triage workflow so recommendations become tracked actions:

1. PFAC submits recommendation (written summary).
2. Staff liaison assigns to operational owner within 7 days.
3. Owner records decision (accept, modify, not feasible) with rationale and timeline.
4. Progress updates returned to PFAC monthly and published in a brief public tracker quarterly.

Maintain a PFAC Recommendation Register (simple table: date, topic, recommendation, owner, status, due date, outcome).

Sample Intake Form Fields (use as template)

• Full name
• Preferred pronouns
• Contact info (phone, email)
• Preferred language
• Brief description of experience with our organization
• Interests / areas you’d like to work on
• Barriers to participation and accommodations needed
• Availability (days/times)
• Consent to share anonymized quotes (yes/no)

Evaluation Metrics & Sample Questions

Track process and outcome measures to avoid token engagement.

Process metrics

• Member diversity index (coverage vs. patient population)
• Attendance rate
• Time from recommendation to assignment
• Percent of recommendations with a documented decision within 30 days

Outcome metrics

• Number of implemented changes influenced by PFAC
• Staff satisfaction with PFAC collaboration (survey)
• Patient-experience improvements tied to PFAC projects (e.g., clearer discharge instructions -> reduced calls about medication)

Sample member feedback questions (post-meeting)

1. Did you feel heard today? (yes/partly/no) — please explain
2. Was the meeting accessible and inclusive?
3. Do you understand next steps and who will follow up?

Avoiding Tokenism

Practical guardrails:

• Limit advisory-only items; ensure at least one item per quarter has an operational owner and measurable outcome.
• Rotate staff presenters to ensure decisions are senior-authorized or have a named sponsor.
• Provide training and paid orientation so members contribute effectively.
• Publicly report outcomes so members see the impact of their work.

Templates & Next Steps

Suggested immediate actions for a team that plans to start a PFAC:

1. Confirm executive sponsor and staff liaison.
2. Adopt the mission template, finalize scope, and approve charter timeline.
3. Post recruitment materials and begin outreach with the recruitment script.
4. Schedule first orientation meeting and circulate materials 7 days ahead.

Capability Enhancement Opportunities

To make this playbook operational, consider adding:

• An interactive intake form (collect responses, consent, accommodation needs) that stores submissions for recruitment tracking.
• A Recommendation Register implemented as a tracked interactive table so owners update status and the PFAC sees progress.
• An owned toolkit version of this playbook that an organization can copy and adapt to local policy and governance standards.

Further Reading & Resources

Include links to institutional privacy policy, compensation policy, training modules for patient partners, and templates for orientation slides and minutes.