Patient Family Advisory Councils: What They Are, How They Help

Patients, families and caregivers talk at a recent live patient forum
Patients, families and caregivers talk at a recent live patient forum

Recently, the formation and active participation of Patient Family Advisory Councils has been gaining ground at major medical centers. These councils are comprised of patients, family members of patients and employees from different departments in the medical center.

The idea of families of patients being considered as part of the medical team and not as “visitors” is more practical, more helpful and results in much better patient satisfaction and overall patient outcomes. Patients want their family members as part of their team and their support group. They trust them and rely on them. And no one knows the patient better than those close to them.

The Institute for Patient and Family-Centered Care  has great information about creating PFACs, including recruiting participants, developing bylaws and processes, and sustaining the council.

The Agency for Healthcare Research and Quality (AHRQ) also has some good information about why a PFAC can help further patient-centered care efforts in improving the delivery of care. The cahps website  explains,

“These councils help overcome a common problem that most organizations face when they begin to develop patient-and family-centered processes: They do not have the direct experience of illness or the health care system. Consequently, health care professionals often approach the design process from their own perspective, not the patients’ or families’. Improvement committees with the best of intentions may disagree about who understands the needs of the family and patient best. But family members and patients rarely understand professional turf boundaries. Their suggestions are usually inexpensive, straightforward, and easy to implement because they are not bound by the usual rules and sensitivities.”

Many major health centers now have PFACs. Some are new and some have been around for quite a while. Mayo Clinic formed a PFAC in 2004 and on the website, they describe some of the projects it has participated in, including improving wheelchair access, improving health literacy, evaluating health history forms and others.

Dana Farber Cancer Institute in Boston, MA established a PFAC in 1998. According to the Dana Farber website, the council has spear-headed the following projects:

 

  • Helped design treatment, program, and common areas throughout the Institute, including the award-winning Women’s Cancers Program;
  • Participated in renovations to the radiation therapy unit at Brigham and Women’s Hospital;
  • Launched a “Patients as Educators” program to share experiences and feelings about oncology patient/provider relationships with small groups of nurses and doctors;
  • Advocated for increased psychosocial support services;
  • Addressed patient parking policies;
  • Worked with Patient Accounting to create more patient-friendly billing letters;
  • Participated in planning for the Complementary Therapies Program;
  • Launched Side by Side, a quarterly newsletter for patients;
  • Served as a national model for patient-family participation in clinical-care services.

 

MD Anderson Cancer Center in Houston, TX has always been involved in patient-centered care, but the PFAC was just created last year. Patients and family members actually helped in the creation of the council, writing bylaws, developing strategies and recruiting members.

I spoke with Kay Swint at MD Anderson who co-chairs their new PFAC with 2 patient/family member co-chairs. Swint was part of a group from MD Anderson that attended a seminar at the Institute for Patient and Family-Centered Care specifically designed for learning how to create a PFAC.

Swint spoke about patient-centered care in general, explaining that it is really about reducing anxiety and suffering and forming strong relationships with patients.

“When you do that, outcomes improve. It is not enough to write a treatment plan. You have to make sure the patient and family are fully engaged and on the same page. You have to understand what the patients really care about and what their values and needs really are.”

The MD Anderson PFAC has 27 patients and family members and has 10 MD Anderson employees. The Co-chairs report up to Barbara Summers, Chief Nursing Officer and Marshall Hicks, MD, Division Head of Diagnostic Imaging. Summers and Hicks are both Executive Sponsors of the Patient Experience Division at MD Anderson.

The MD Anderson PFAC is currently working on projects involving patient communication and education, including how to get information to patients when and where they need it. They are capturing patient/family stories that teach valuable lessons on what’s important for patients. Swint explained that these stories are a great way to convey to health care professionals patients’ values and needs.

The Council is also working on electronic health record implementation and what is important from the patient’s perspective.

When I asked Swint what the patient and family members that were on the council thought about the initiative, she said that they were extremely enthusiastic.

“Members really want to contribute. If the meeting is running late and we ask who can stay to give feedback, most will willingly stay. This is so important. Just 15 minutes with patients and family members really improves our decision-making; their feedback is so important.”

City of Hope cancer center in California initiated their Patient Family Advisory Council in 2008. In 2012, they also initiated El Concilio, a PFAC for Spanish speaking patients and caregivers. I spoke with PFAC Co-chair, Annette Mercurio, about the council and what it does.

Mercurio explained that the council Chair is always a patient or caregiver and is elected annually. The Co-chair is a hospital employee. The City of Hope PFAC is certainly patient driven, with 22 patient members and 3 hospital employee members.

Some projects that the City of Hope PFAC has been involved with:

 

  • Several PFAC members sat with City of Hope CMO, COO and other hospital leaders to discuss outpatient care redesign
  • PFAC members contributed to improving after-hours meal options for caregivers
  • PFAC members contributed to strengthening volunteer support for chemotherapy patients
  • PFAC members contributed to the designing of the patient portal
  • PFAC members served on Rapid Improvement Event teams that contributed to process improvements for patient registration, design of the ambulatory surgery center in Amini, specimen transport and chemotherapy patient education

Mercurio told me that the hospital really feels that the council’s help is crucial for tackling any project that involves patients, their families and caregivers. When asked about the patients and caregivers’ thoughts on the council, Mercurio explained,

“The members feel that using their insight will really benefit other patients and caregivers. That helping others by serving on the council is one of the most important ways to make a difference. I am humbled by the dedication of these individuals.”

The emphasis on patient-centered care, patient satisfaction and involvement of patients, their families and caregivers is actively making a difference in healthcare. We at the Patient Empowerment Network hope that it gains momentum as it moves forward. Join the Patient Empowerment movement!