Patient and Family Advisory Council (PFAC) Volunteer

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   advocacy   and   feel   comfortable   sharing   their   perspective   as   a patient or caregiver and using their story in service of advocating for others not at the   table.

• Able   and   willing   to   share   perspective   and   constructive   feedback   in   a   respectful   and professional manner

• Committed,   reliable,   and   flexible.

C ommitment:

• PFAC members must   commit   on   average   to   at   least   5-10   hours per month toward all   PFAC   activities,   including   attend ing   monthly   meetings,   has   access to   and is   comfortable   using   email,   and   has   the   ability to   download and review electronic materials.

• Coaching, tech support and access, and interpreter services are available as needed to help and support members function   successfully.

• This role has a 6-year term limit beginning from first PFAC meeting as a member; each year PFAC members sign an annual letter of intent affirming their commitment to serve as a PFAC council member in the following year.

Please note that caregivers applying for this program must obtain a consent form from their loved one, or from the loved one’s personal representative, to apply for this role.   The consent form is attached as part of the application process.   Any questions about the consent process can be directed to   [email protected] .

At Dana-Farber Cancer Institute, we work every day to create an innovative, caring, and inclusive environment where every patient, family, and staff member feels they belong. As relentless as we are in our mission to reduce the burden of cancer for all, we are equally committed to diversifying our faculty, staff, and volunteers. Cancer knows no boundaries and when it comes to hiring the most dedicated and diverse professionals, neither do we. If working in this kind of organization inspires you, we encourage you to apply.