Health Care For All Calls On Hospitals To Increase Diversity And Community Representation Of Patient And Family Advisory Councils

Friday, December 11, 2015


Boston - Every acute and rehabilitation hospital in Massachusetts has a Patient and Family Advisory Council (PFAC), in compliance with a law passed in 2008 with the support of Health Care For All (HCFA). In order to integrate the voices of patients and family members in the daily operations of hospitals, the legislation required all 98 institutions to create PFACs by 2010. Massachusetts is still the only state in the country to have such a mandate.

Five years after their creation, however, most PFACs face challenges in recruiting and retaining members who represent the ethnic, linguistic and cultural diversity of the communities served by their hospitals. HCFA reviewed the mandated reports recently submitted by PFACs and concluded that only a fraction of the reporting hospitals' PFACs are truly representative of their patient and community compositions.

"The law requires that hospital Patient and Family Advisory Councils are to be representative of the communities they serve. We know that creating a cohesive committee with diverse and representative membership can be challenging. However, we believe that the time and investment required is vital for the long-term transformative impact of these groups," said Amy Whitcomb Slemmer, Executive Director of Health Care For All.

HCFA found that only two Massachusetts PFACs truly represent the diversity of the areas they serve. Carney Hospital in Dorchester has a PFAC in which almost 63% of members are Black/African American. 65% percent of the members of the PFAC established at Shriners Hospital for Children in Springfield are of Hispanic/Latino descent.

"Accommodating the diverse needs of our patients and families is the essence of the Patient and Family Advisory Council at Shriners Hospitals for Children. The council provides a unique opportunity for patients, families and community members to work with staff to identify opportunities and implement changes to improve the patient and family experience. To assist our high percentage of Hispanic participants, a current PFAC family member serves as a Spanish interpreter at many of our meetings. All members are encouraged to reach out and invite other families that have received care at the neighboring Ronald McDonald House," stated Samantha West, CCLS, CHBE, Child Life Specialist at the hospital located in Springfield.

Several other Massachusetts hospitals have made progress and have come closer to representing the diversity of their communities; these hospitals include Lowell General Hospital, SouthCoast Hospital and Baystate Medical Center in Springfield.

In total, HCFA reviewed reports from 67 of the state's 98 acute and rehabilitation hospitals mandated to provide such reports.

These institutions did not make their reports available until after the filing deadline and therefore were not analyzed as part of this effort:

Clinton Hospital
Kindred Hospital-Boston
Lawrence General Hospital
Massachusetts Eye and Ear Infirmary

The hospitals below did not make their reports available and therefore currently are non-compliant with state law:

Anna Jacques Hospital
Arbour Hospital
Arbour-Fuller Hospital
Arbour-HRI Hospital
Austen Riggs Center
Baystate Noble Hospital
Bournewood Hospital
Bridgewater State Hospital
Edith Nourse Rogers Memorial Veterans Hospital
HealthSouth Rehabilitation Hospital of Western Massachusetts
Kindred Hospital--Boston North Shore
Nantucket Cottage Hospital
Newton-Wellesley Hospital
The Meadows of Central Massachusetts
Tufts Medical Center
Vibra Hospital of Southeastern Massachusetts
Vibra Hospital of Western Massachusetts
Vibra Hospital of Western Massachusetts - Central Campus
Whittier Rehabilitation Hospital-Bradford

"I commend those Massachusetts hospitals that are invested in robust consumer engagement through the work of their Patient and Family Advisory Councils, and I appreciate the patient-driven advancements highlighted in the reports," said Marylou Sudders, Secretary of the Executive Office of Health and Human Services. "It is vital that consumers have access to the PFAC information."

All the PFAC reports with data about 2014 activities are available here. You can also read HCFA's summary highlighting accomplishments and opportunities for improvement for the PFACs here (PDF).

Some of those achievements include: implementing a project related to Protected Health Information; developing an End of Life Medical Resident Training; creating a patient comfort cart that is taken on rounds of inpatient floors to ensure that patients have access to items they may have left at home, including books, magazines, pens and paper, toiletries, etc.; initiating the procurement and installation of an information and education kiosk in the outpatient services department; and conducting a comprehensive service review identifying gaps in unmet needs of hospital services.  

"The initiatives promoted by the different PFACs vary in nature and scale. There are advancements made in terms of safety or better communication and coordination of care. In some cases they are small actions that can be very meaningful for patients or loved ones navigating the health care system,"added Whitcomb Slemmer.

For example, one local hospital is trying to make the experience of extracting a tooth more patient-centered for children: "Hospital staff is unable to return the pulled tooth to the family because it is considered medical waste at that point. Children come to the hospital scared and anxious and then leave, not only in pain, but also disappointed because they don't have a tooth to take home and put under their pillow for the tooth fairy," said a hospital PFAC co-chair Alexis Snyder. He continued,"We are considering alternatives to lessen the frustration for these children, such as maybe having the tooth fairy visit the operating room while the child is under anesthesia and leave a prize, or somehow give the kid something else instead of the tooth to bring home and put under their pillow. It sometimes takes a patient or family member to shine the light on something that may seem insignificant but very impactful."

Over the next year, Health Care For All will focus on providing additional assistance to PFACs to help them diversify their membership and improve their overall effectiveness.

"Massachusetts leads the nation in mandating the involvement of patients and families in our hospitals. We are delighted that hospitals are increasing their engagement with patient and family council members and see great opportunities to continue to expand this engagement in meaningful ways," stated Whitcomb Slemmer.