Team and Leadership: Patient and Family Advisory Council for Quality (PFACQ)
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The Patient and Family Advisory Council for Quality (PFACQ) comprises over 30 patient, family, and caregiver advisors, and several MSK employees.
Leadership
Ray Gustin
Why did you join PFACQ? I joined PFACQ in early 2022, after participating in several PFACQ-led Death Over Dinner events where I shared my personal experiences as a cancer patient at MSK and engaged with other patients, caregivers and MSK medical professionals. Through follow-up conversations with the program coordinators, I realized I yearned to be a part of this awe-inspiring group of people who have lived with life-threatening cancer and who are committed to positively impacting all aspects of the patient experience at MSK. I have focused my efforts to date in two areas: 1) contributing as a member of several ongoing MSK quality assurance committees that regularly review and evaluate challenging patient cases, and 2) participating as a member of broad-ranging MSK technology initiatives including the roll-out of a comprehensive, hospital-wide database application.
What are your goals of being on PFACQ? A PFACQ Co-Chair I am committed to working across the organization to improve care options and quality of life for MSK patients and caregivers facing end-of-life decisions. I believe PFACQ members have a unique voice, and collectively we have the capacity, by working with MSK clinicians, staff and leadership, to make important strides in an area that affects the lives of so many cancer patients and their loved ones.
Annie Ellis
What experiences do you have that are valuable to your work as a PFACQ member? In addition to first-hand experience as a patient, clinical trial participant and caregiver, I volunteer to provide peer support to patients and serve as a research advocate. Connecting with others in this way helps me to provide a wide patient perspective beyond my own experiences and keeps the needs of people in active treatment and the difficulties they may encounter top of mind. As a research advocate, I have been trained to bring a broad patient perspective to grant review panels and scientific discussions with researchers and medical professionals to help ensure that research and clinical trials remain patient-centered.
What have you learned as a PFACQ member I have learned how extraordinary the entire staff is—not just the medical teams I see during appointments and scans—but every single person behind the scenes. So many dedicated staff are essential to providing outstanding care for people with cancer and everyone is continually hard at work to do even better. I have also learned how much leadership in every department embraces patient and caregiver viewpoints. It is an honor and privilege to be involved in bringing patient voices to all of MSK’s work.
Meet Some of Our Members
Abdullah Abdulkareem
What has been the best part about being a member of the PFACQ? I’ve learned so much about what makes a good versus great cancer center. I also learned that cancer care is so much more than simply what chemotherapy drug you’re on. Factors such as diet, family, sleep, mental health are such big drivers in survivorship and it’s important to emphasize all those areas for patients going through treatment.
Jennifer James
Why did you join PFACQ? After my daughter completed treatment, I made a promise to myself that I would do whatever I could to help other MSK patients and caregivers. Through my work on PFACQ, I have had the opportunity to make things a little better for those that have followed in my footsteps. I have had the opportunity to collaborate with MSK staff throughout the institution and it is very rewarding to see how the patient and caregiver experience is prioritized.
Tom Graham
Why did you join PFACQ? I began volunteering in the Patient-to-Patient Support Program after being treated at MSK in 2015. As a natural extension of this work, I joined PFACQ in 2019 to help bring the patient voice to more aspects of care at MSK. I was impressed by the care I experienced the hospital but I have been even more impressed working with teams at MSK and seeing how everyone welcomes our work. I am continually impressed by how everyone at the hospital puts the patient and family first in everything they do.
What project has felt particularly meaningful to you? Working with DigITs, MSK’s expansive project to transform the hospital into a digital organization, has been especially meaningful. PFACQ has had a significant impact on patient-facing applications like the expanded patient portal and the new telemedicine interface, which has become critical during the COVID-19 pandemic. It has been rewarding to see the collaboration between the technologists and all the constituencies in the hospital, including PFACQ. The resulting applications are all the best for this combined effort.
Eliza Weber
What project has been the most rewarding? I personally have been involved in many of the pediatric initiatives, whether Infection Control, supporting bereaved parents, the Pediatric Ethics committee, the Pediatric QA Committee and a couple of Root Cause Analyses. I have seen through this work that the medical and administrative staff is open and solicitous of caregiver input and feedback. Moreover they are self reflective, analytical and action oriented, willing to pursue change in order to improve the institution and the way it serves its patients.
Frank Licciardi
Why did you join PFACQ? I felt I could help more patients by integrating the collective patient perspective into MSK more broadly — and that was precisely what PFACQ offered! The people at MSK acknowledge that it is critical to hear the patient voice to drive change and the PFACQ takes that responsibility seriously.
What project has felt particularly meaningful to you? We are focused on assessing how patients currently feel about the end of active treatment — a process many described as anticlimactic and confusing, as they look to establish a “new normal” in their lives. I’ve found it very meaningful to assess how patients feel broadly and then take those learnings to help us create a better transition process.
Mike Philbin
Why did you join PFACQ? What are your goals of being on PFACQ? I started volunteering in the Patient and Caregiver Support Program. In that role I speak with patients on a one on one basis. I joined PFACQ so that I could have an impact on a greater number of patients.
What have you learned about MSKCC as a result of this PFACQ experience? Since joining PFACQ I have come to realize how dedicated MSK is to not only medically treating patients, but striving to minimize the psychological impact of the diagnosis and subsequent treatment.
What committee has been the most rewarding? The assignment that I have enjoyed working on most is the Anticoagulation Management Committee. As a patient that has been treated for cancer and on anticoagulation therapy, I can offer a unique viewpoint.
Alex Zimmer
What PFACQ project has been the most rewarding? I found it very rewarding to help create our new patient video. It was truly gratifying to work with many different departments and talented MSK people in order to produce a video that reflects new patients’ fears and hopes with sensitivity and authenticity. With the video, we want people to know they are not alone at MSK and that other patients who have traveled the same road are here to help.
Kate Niehaus
Why did you join PFACQ? It’s incredibly satisfying to find ways to make the patient and family experience better. I remember how difficult and frightening it was when I was first diagnosed. The work of the PFACQ is so important because we provide an expertise that few others at the institution possess: We know what it is like to be a patient or a family caregiver.
What has been the most rewarding part of joining PFACQ? I have loved getting to know the other PFACQ members and staff members at MSK, and seeing our projects develop from just ideas into actual institutional changes. A small group of committed individuals can make a big difference.
I’ve also written several articles about the importance of the patient voice in cancer care.
What has been the most surprising part of your PFACQ experience and why? MSK has really devoted time and resources to make sure that it delivers patient-centered care and clearly sees our advisors as vital tools for identifying what that care looks like.
Jennifer Rogers Carlock
What project has been the most rewarding? I’ve been part of the working group looking at the transition from active treatment to monitoring. For many survivors who have been through treatment, those first months and years after you are “done” can be a mental marathon. I, for one, was grateful to be alive but crippled with anxiety about the future. Our group has been working with MSK on how to make the process easier. Through this project and others I’ve assisted on, the most rewarding part has been meeting so many people who really care about their patients and the institution.
Tom Chiusano
What has been the best part about being a member of the PFACQ? I am a survivor of stage IV melanoma for 19 years (and counting) and am a patient of Daniel Coit and Paul Chapman. In my eight years as a volunteer, I’ve found it extremely gratifying to participate on several quality-assurance committees and to become a regular speaker at MSK’s new employee orientation.
Michele Collins
Why did you join PFACQ? I’ve been a Patient to Patient Volunteer & PFACQ member since 2018. I have been passionate about paying it forward & giving back to MSK since my ovarian cancer diagnosis in 2015. I love being a part of this diverse & amazing community of patients & caregivers who all have the similar goal of improving cancer care for future patients & families.
Tanya Zvonkin
What has been the best part about being a member of the PFACQ? I really appreciate being in a space where all of us where touched by something so epic and used it as an opportunity to change the world, one PFACQ change at a time. I find myself always awe-inspired by the conversation, the work, and compassion.
Jennifer Tota, Vice President, Hospital Administration
Why did you join PFACQ? It is an absolute honor for me to be a member of PFACQ. Having the opportunity to work alongside incredible individuals who bring their perspective from their experiences as patients and caregivers is both humbling and invigorating. I believe PFACQ is one of our most powerful tools in our quest to create an excellent patient experience at MSK.
Why did you join PFACQ? Being a member of PFACQ has been a rewarding experience. Hearing and understanding the perspectives and experiences of both patients and caregivers provides an incredible opportunity to provide excellent patient- and family-centered care at MSK. PFACQ is a valuable tool for the institution, and I am honored to work alongside these individuals.
Meredith Cammarata, Manager, Social Work
Why did you join PFACQ? In my work as an oncology social worker, I have learned that while clinical knowledge is very important, sometimes my best teachers are my patients. I feel it is imperative to have the voices, experiences and knowledge of our patients and caregivers incorporated into every part of our organization. Being a member of PFACQ, I see firsthand how patients and caregivers can impact important change within a health care system. It is an honor to be part of PFACQ and I look forward to it’s continued growth and success.
Beau Amaya, Associate Director, Patient & Community Education
What are your goals of being on PFACQ? As an ambassador representing the patient and caregiver education team, I want to ensure projects the committee is involved with have a focus on health literacy, readability, and understandability. I also want to listen to feedback from members of what is working and what is not, so I can take back to my group and other key stakeholders across the organization.
Meet Some of Our Support Staff
Elizabeth Dunlop, Senior PFACQ Manager
Why did you join PFACQ? The dedication and compassion that PFACQ members possess is an inspiration, and I am honored to work with them daily. It is a privilege to be part of a team that strives to improve the experiences of all MSK patients and family members.
Why did you join PFACQ? First, it is an honor to be part of this council and I am grateful for the opportunity to serve in the physician champion capacity.
I joined because I am a firm believer that patient care is not given at its full potential unless the physician or practitioner understands both the medical aspect and the patient’s needs, thoughts and understanding of his/her disease. I am passionate about patients, their care and safety and this gives me the opportunity to serve as a bridge between patients, families, and healthcare providers.
Christine Mezzina, PFACQ Coordinator
Why did you join PFACQ?
PFACQ allows me to work alongside incredibly brave patients and caregivers. Their unique perspective has such an impact on quality initiatives here at MSK. I am honored to be a part of this dedicated council.
What has been the best part about being a member of the PFACQ?
PFACQ has allowed for ongoing improvement of my understanding of the patient perspective and learning how much patients value the overall experience of MSK care. I am grateful to work with dedicated, caring people!
