Input from Patients, Families, and Caregivers Can Enhance the Quality of Patient Care

Meg Barbor, MPH

May 2017, Vol 7, No 5 - Quality Care


Orlando, FL—Establishing a Patient and Family Advisory Council for Quality (PFACQ) is one of the most direct routes to true patient-centered care, said Kate Niehaus, MBA, Chair, PFACQ, Memorial Sloan Kettering Cancer Center (MSKCC), New York City, at the 2017 ASCO Quality Care Symposium. Ms Niehaus discussed how PFACQs can be used as a mechanism for the patient’s voice.

Established in 2015, the PFACQ at MSKCC aims “to integrate the patient, family, and caregiver perspective into every aspect of efforts to prevent, diagnose, treat, and cure cancer,” and envisions that “every patient, family member, and caregiver experience state-of-the-art cancer care that is safe, responsive, compassionate, efficient, collaborative, transparent, and respectful,” said Ms Niehaus.

The PFACQ council at MSKCC is represented on 16 hospital committees and comprises 23 members (18 patients and caregivers and 5 staff members) aged 30 to 79 years who represent a wide variety of cancer types and treatment modalities.

“The council participated in all of the root cause analyses in 2016, and all that have taken place in 2017,” said Ms Niehaus. “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,” she added.

Lessons Learned

The PFACQ council at MSKCC made a “laundry list” of areas that are in need of improvement for the delivery of higher-quality cancer care, and then grouped these items into 1 of the following 3 focus areas:

  1. Improving the new patient experience
  2. Transitioning from active treatment to monitoring
  3. End-of-life care or transition to a hospice.

A survey on the impact of the PFACQ yielded positive results, and the council has received overwhelmingly encouraging feedback.

The lessons learned from cancer 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.

For example, individuals with a cancer diagnosis are 3 times more likely to file for bankruptcy than those without cancer, and 33% of working-age cancer survivors incur financial debt. Through patient feedback, MSKCC staff learned that financial toxicity was a problem for many of their patients, so the center now uses a software system to anticipate the financial issues of patients, assists patients in finding financial resources, and allows patients to become more adherent to their therapies.

Through the PFACQ, MSKCC also learned that the “wonderful but terrifying moment” of transitioning from active treatment to monitoring was not being handled well at MSKCC. Consequently, MSKCC is collecting data to design a better transition experience.

“We know that this group of patients [survivors] is growing in size, and we need to better handle what one social worker at Memorial calls ‘cancer part B,’” Ms Niehaus said.

Listen to Their Stories

“Listen to the members of your PFACQs; theirs will be the voices that will lead you toward true patient-centered care,” advised Ms Niehaus. Some of what PFACQ members suggest will be easy and seem obvious, and, in that case, simply make the change and empower PFACQ members with a quick response, she said. But some suggestions will be less obvious, 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 include the expansion of a peer support program that pairs newly diagnosed patients with those who have already been through treatment, the development of a patient-led video for new patients about the experience of receiving treatment at MSKCC, a survey evaluating the transition from active treatment to monitoring, and the identification of best practices related to end-of-life care and hospice.

“All of the stories from members of the PFACQ are personal, but within each one is likely to be a universal truth. Carry their stories with you; I think you will find they fundamentally change how you approach your work,” Ms Niehaus concluded.