The role of a PFAC member is to provide feedback, generate ideas, and offer insight from a patient or family/caregiver perspective to inform and improve the Dana-Farber Cancer Institute and/or Boston Children’s Hospital (DFCI and/or BCH) patient and caregiver experience. PFAC members serve in an advisory role, offering perspectives that help shape programs, services, and strategic initiatives related to patient and family-centered care. PFAC members may be asked to share their perspectives and thoughts based on their experience with a particular aspect of care, department, or illness. They participate in meetings, discussions, and projects where the patient and family voice is needed, and may review and provide input on materials, processes, and initiatives that affect patients and families. It is important that PFAC members lead with their patient or caregiver lens and serve as partners to DFCI and/or BCH staff and leadership, helping to ensure that organizational planning and improvement efforts are informed by the lived experiences, needs, and priorities of patients and families.
Located in Boston and the surrounding communities, Dana-Farber Cancer Institute is a leader in life changing breakthroughs in cancer research and patient care. We are united in our mission of conquering cancer, HIV/AIDS, and related diseases. We strive to create an inclusive, diverse, and equitable environment where we provide compassionate and comprehensive care to patients of all backgrounds, and design programs to promote public health particularly among high-risk and underserved populations. We conduct groundbreaking research that advances treatment, we educate tomorrow's physician/researchers, and we work with amazing partners, including other Harvard Medical School-affiliated hospitals.
Volunteering at Dana-Farber is a rewarding and enriching experience. Dana-Farber staff, donors, and volunteers all work toward a common goal of defeating cancer. As a supplemental resource for patients and families, volunteers who work at Dana-Farber are closely linked to this mission, as are those who volunteer at events that raise essential funds to support it. Volunteers are committed and reliable people who make a very real difference, everywhere they work.
PFAC members contribute their patient and family/caregiver perspectives to help inform and improve the patient and caregiver experience. Participation may be in person, by phone, or through electronic means, and may involve a one-time activity or ongoing involvement with a project team or committee. Activities may include:
Attending monthly PFAC meetings
Providing input on the design or improvement of programs, services, policies, or processes
Collaborating with staff on research design, implementation, or communication
Offering perspectives to inform legislative or public policy efforts related to cancer care
Reviewing and providing input on patient education materials written at approximately a 6th-grade reading level
Reviewing or helping to draft patient and family communications
Presenting or co-presenting to staff, or at conferences and events, to share the patient and family perspective
Writing blogs or other content to share personal, cancer-related experiences internally and externally
Background and Qualities of a PFAC Member
PFAC members are individuals with lived experience of care at Dana-Farber Cancer Institute and/or Boston Children’s Hospital, either as a patient or as a caregiver. Members are:
A t least one year past initial diagnosis (for patients), or at least one-year post-bereavement (for bereaved caregivers).
Have experience with inpatient and/or outpatient oncology or blood disorder care at DFCI and/or BCH.
For caregivers - are a family member, loved one, or friend (at least one year post initial diagnosis) who accompanied the patient to most appointments at DFCI/BCH and provided care and support at home.
Interested in patient…