July 31, 2007 Reflections of A Patient and Family Advisory Council at 5 Years Mike Anderegg, Katie Binda, Cynthia Goheen, Win Hodges

PFAC 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

11 Membership Progression

12 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

Logistics 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 environment –Technology –Administrative structure Constant process improvement –“Geek Sheet” –Membership recruitment process –Logistics

Impact Other hospital departments are replicating our council Recognition and involvement from Cancer Center administration 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

Challenges 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 council) 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 members Understanding that the work that is never “done.” Continuously learning What PFAC is not about: Advocating individual “agendas” Complaining about and singling out individual providers

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: Courage Empathy Openness Thoughtfulness Trust Patience Compassion Respect –for each other –for our patients and families –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 role.” -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 themselves.” -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 change. The Cancer Center Council is a model for other areas within the MGH and acts as an innovator and ambassador.

“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