To improve the quality of cancer care, the voices of cancer patients should be integrated into care delivery and evaluation, according to Neeraj Arora, PhD. “Patient-centeredness needs to be more [ Read More ]
July 2017 VOL 8, NO 7
Using Patient and Family Advisory Councils to Deliver True Patient-Centered Care
Establishing a Patient and Family Advisory Council for Quality (PFACQ) is one of the most direct routes to true patient-centered care, according to Kate Niehaus, MBA, Chair of the PFACQ at Memorial Sloan Kettering Cancer Center (MSKCC) in New York City. At the 2017 American Society of Clinical Oncology Quality Care Symposium, Ms Niehaus discussed how PFACQs can be used as a mechanism for the patient’s voice.
The PFACQ at MSKCC, established in 2015, has a mission “to integrate the patient, family, and caregiver perspective into every aspect of efforts to prevent, diagnose, treat, and cure cancer,” and a vision that “every patient, family member, and caregiver experience state-of-the-art cancer care that is safe, responsive, compassionate, efficient, collaborative, transparent, and respectful.”
The council is currently represented on 16 hospital committees and consists of 23 members (18 patients and caregivers and 5 staff members) ranging in age from 30 to 79 years and representing a wide variety of disease types and treatment modalities. “The council participated in all of the root cause analyses in 2016 and all that have taken place in 2017,” she said. “We’re involved with quality improvement projects, we work closely with our patient portal group, and we participated in design innovation workshops that relate to redesigning patient and caregiver experiences.”
According to Ms Niehaus, the group started by making a “laundry list” of areas in need of improvement for the delivery of higher-quality cancer care, and then grouped items into 1 of 3 focus areas: improving the new patient experience, transition from active treatment to monitoring, and end of life/transition to hospice. A survey on the impact of the PFACQ yielded positive results, and the council has received overwhelmingly positive feedback.
The lessons learned from survivors on the council have informed quality care initiatives at MSKCC. Ms Niehaus imparted lessons learned from her own cancer journey and shared the stories of other cancer survivors on the PFACQ.
Those with a cancer diagnosis are 3 times more likely to file for bankruptcy than those without, and one-third of working-age cancer survivors incur debt. They learned through patient feedback that financial toxicity was a problem for many patients at their cancer center, so they now use a software system to anticipate the financial issues of patients, assist them in finding the resources they need, and allow them to be more adherent to their therapies.
Through the PFACQ they also learned that the “wonderful but terrifying moment” of transitioning from active treatment to monitoring was not being handled well at their cancer center. They are now in the process of collecting data to design a better transition experience, with the goal of elevating the discussion away from anecdotes and toward more statistically significant data.
“We know that this group of patients is growing in size, and we need to better handle what one social worker at Memorial calls ‘Cancer Part B,’” she said.
“Carry Their Stories”
“Listen to the members of your PFACQs; theirs will be the voices that will lead you toward true patient-centered care,” she advised. She said that some of what they suggest will be easy and seem obvious, and in that case, simply make the change and empower PFACQ members with a quick response. But some suggestions will be less obvious and more complicated and costly, and in that case, test those hypotheses and study the issues. “But ask the PFACQ members to be a part of the process. They will help you to ask the right questions and interpret the data correctly,” she said.
PFACQ accomplishments to date include the expansion of a peer support program that matches up newly diagnosed patients with those who have already been through treatment, development of a patient-led video for new patients about the experience of being treated at MSKCC, a survey evaluating the transition from active treatment to monitoring, and identification of best practices within the institution that relate to end-of-life care and hospice, she reported.
“All of the stories from members of the PFACQ are personal, but within each one is likely to be a universal truth,” she added. “Carry their stories with you; I think you will find they fundamentally change how you approach your work.”