Reflections of A Patient and Family Advisory Council at 5

Reflections of A Patient and Family
Advisory Council at 5 Years
Mike Anderegg, Katie Binda, Cynthia Goheen, Win Hodges
31, 2007
July 2007
• "Serving on the Patient and Family Advisory Council
has provided highly rewarding opportunities to give
back to those who saved my life and to work with
other cancer patients and family members to improve
the experience of those facing diagnosis, treatment
and survivorship."
– 6 yr member
• “Through my participation in PFAC I have a voice in
improving the experience for current and new
patients at the MGH Cancer Center. It is a tangible
way for me to express my (thanks and) give back to a
caring institution and the dozens of wonderful
individuals who helped me take care of my wife
during her 5 year battle with breast cancer.”
-1yr member
Why was PFAC formed?
Value opinions of patients and families
Anecdotal experiences and feedback
Formal mechanism to incorporate viewpoints
Partnership ensures best outcomes
The Cancer Center’s Patient and Family
Advisory Council
• Mission:
To ensure that the voices of patients and families are
represented in an effort to enhance their entire
experience at the Massachusetts General Hospital
Cancer Center
PFAC Responsibilities/Activities
• Advisory role in aspects of planning and providing of
cancer care….human experience
• Three areas of focus:
– Patient- and Family-Centered care
– Staff education
– Sharing with and learning from others
Patient- and Family-Centered Care
• Participate/advise/provide feedback on:
– Patient and family experience
– Support and education programs
– Hospital-wide initiatives
Staff Education
• Purpose- To have a dialogue about the human
experience of living with cancer and to provide
support for those caring for cancer patients
– Hematology Oncology Fellows, Neuro-Oncology Fellows,
and Radiation Oncology Residents
– Support Staff of Cancer Center
– Cancer Center Staff Orientation for all new staff
Sharing With and Learning From Others
• Networking with other councils
– Within MGH
– External organizations
• Participating in 3 national IFCC conferences
• Project Collaboration
– With architects - guiding principles and values related to
human experience of cancer
Membership Progression
21 members
15 pt/family
6 staff
21 members
15 returning
6 new & 6 staff
22 members
13 returning
9 new & 5 staff
25 members
19 returning
6 new & 5 staff
PFAC Members, Past and Present
Current Council
• 20 Patient/Family members
• Cancer Center Staff
Physician, Clinical Director of Cancer Center
Associate Chief Nurse
Executive Director for Cancer Center Administration
Director, The HOPES Program (Oncology Social Worker)
Executive Assistant to Clinical Director
Plus the managers of major Cancer Center clinical areas
12 monthly meetings
2 hour duration
Dinner and parking reimbursement provided
One staff member: central point of contact
Additional meetings are scheduled based on need
and task.
• Any additional time beyond 2 hour monthly
commitment is optional
Keys to Success
• Constant learning and evolution
• Adaptation to constantly changing hospital
– Technology
– Administrative structure
• Constant process improvement
– “Geek Sheet”
– Membership recruitment process
– Logistics
• Other hospital departments are replicating our council
• Recognition and involvement from Cancer Center
• Positive feedback from Cancer Center Staff
• Presentation to MGH Board of Trustees
• Positive feedback from patients and families in the
Cancer Center
• Know that we are making a difference
Setting priorities/expectations
Ensuring a “good mix” of members
Collective voice vs. individual agendas
Balancing process with content
Creating a collaborative environment (CC staff and
• Integrating new members
• Experiencing death and dying
The Culture of PFAC
What PFAC is about:
• Improving the MGH Cancer Center through
responsible dialogue with patients and family
• Understanding that the work that is never “done.”
• Continuously learning
What PFAC is not about:
• Advocating individual “agendas”
• Complaining about and singling out individual
What we expect of our council members:
• Ability to use their experience and the experience of
others with cancer to help inform the “bigger picture”
• To listen really well
• To be a good advisor and collaborator with the
Cancer Center
What the MGH Staff on PFAC commit to:
• To work with PFAC members to ensure their voices and
influence is felt in meaningful ways
• To value the learning that will occur
• To respect perspectives
• To be good listeners
Characteristics of our council members:
• Respect
– for each other
– for our patients and
– for our staff
– for our mission
• A good sense of humor!
Staff Testimonials
“The PFAC members that I have worked with on the
Center committee have been very thoughtful and
insightful with all of the discussions. Often their insight
helps bring clarity to the discussion. They have been a
valuable voice at the table and play an instrumental
-Nurse manager
“… working with PFAC has somewhat been an
experiment for us on interactions with patients and
families that has proven to be extremely valuable. It
has broken down some walls in our thinking and
initiated/developed a new element to our philosophy
regarding health care management that is reflected in
opportunities beyond the monthly PFAC meetings
-Cancer Center Senior Executive
“PFAC has been a very significant contributor to the
development of the Cancer Center and particularly to
our sense of the patient and family experience, here. It
provides us with a much more accurate view than we,
as administrators, might have on our own. In addition,
the council has provided valuable input into planning
facilities and programs for the future.
They are a very committed and insightful group of
people who share our goal of providing the best
possible service to patients.”
-Clinical Director, MGH Cancer Center
• “Something that I love about PFAC is that we’re there
not just to do business, but because we matter to
each other. We keep each other coming back, and
this in itself expresses something that I think we all
believe in and are grateful for and love about the
MGH Cancer Center: the whole person matters,
whether patient or caregiver or healthcare
professional or administrator. This is a touchstone for
us and, at least in my view, that’s a key reason why
this Cancer Center excels..”
–2 yr council member
At the 10 year mark?
Will we need a council like this? Yes!
• The human experience of cancer will be impacted by
new treatments; partnering of patients and families
with clinicians will be essential to our future success
• Our mission is the same; how we carry it out will
• The Cancer Center Council is a model for other areas
within the MGH and acts as an innovator and
• “Cancer is the common bond that brought us together
but, as I look around the table…I realize that it is the
bond of purpose and friendship that holds us
together. We have all experienced the dark, bleak
days when we first entered the world of cancer, but
PFAC embodies one of life's lessons… if you wait
long enough and look hard enough, you can find a
silver lining.”
- 6yr council member

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