Partnering with patients, family can improve safety

Partnering with patients and family members can provide dramatic new insight into patient safety issues and directly reduce medical errors, according to the experience of Dana-Farber Cancer Institute in Boston. The hospital has used a formal Patient and Family Advisory Council (PFAC) for seven years and reports that it consistently reveals patient safety issues and solutions that might not have been raised by health care professionals.

Dana-Farber formed the PFAC when the hospital was merging its cancer center with that of Brigham and Women's Hospital, a merger that understandably made patients and family members nervous about continuity of care and patient safety. The PFAC started out as a way for them to voice their concerns and influence how the merger took place, and then it took on an important patient safety role, says Maureen Connor, RN, MPH, vice president for quality improvement and risk management at Dana-Farber.

"This partnership with patients and families can transform your organization in ways you can't even imagine," she says. "This is led by patients, not administrators at Dana-Farber. It is for patients and by patients."

There are at least 15 members of the PFAC at any time, and members serve terms of one to three years. Dana-Farber recently started a pediatric council also. The purpose of the councils is to include patients and family members in all discussions and decision making within the hospital that might affect them, Connor says. They are included in clinical oversight committees, care improvement teams, and education efforts for new employees and physicians in training. In addition, council members sit on the hospital's Joint Committee on Quality Improvement and Risk Management, a board-level committee comprising about 30 top executives.

The committee addresses sentinel events and other serious matters, with the council members invited to join in most discussions. That committee still holds executive sessions for some matters, so PFAC members are not privy to all discussions. PFAC members are sometimes included in root cause analyses. "We also involve council members in our search committees, and all candidates for executive level positions should expect to be interviewed by a patient," Connor says. "That comes as a shock to some candidates."

Much of the PFAC members' input takes the form of a different perspective that might never occur to health care professionals. For instance, Connor says one committee recently was trying to solve a problem in the hospital with a solution that meant longer wait times in the clinic. The health care professionals dismissed the longer wait as just an unfortunate by-product, but the PFAC member spoke up and said it was absolutely unacceptable to extend the already lengthy wait time.

"The plan was changed on just that one patient's input," Connor says. "It makes a difference to have that person in the meeting with a different view."

The PFAC members' input affects quality of care, patient satisfaction, and patient safety, Connor says. These are some of the improvements stemming from PFAC input:

  • Medication safety pamphlets were improved with more thorough and clear information and distributed to patients and family.
  • Wait time has been reduced in some areas, with suggestions such as providing pagers to patients in some clinics so that they can be called just before the clinician is ready to see them.
  • Disclosure of medical errors was made a higher priority by hospital leaders. Hospital leaders were motivated, in part, by hearing from families and patients who explained how withholding information made the adverse event worse.
  • New signage was installed in elevator waiting areas explaining infection control procedures to patients and family.
  • A pediatric PFAC member participated in the planning and design efforts for a clinic renovation.
  • A separate eating area was established for pediatric patients, so that NPO patients did not have to see others eating the food brought in by parents and to lessen the risk of NPO patients getting to the food.
  • The emergency department developed a special "Crowd Risk" protocol for children with leukemia and others who should not be exposed to others with contagious illness. Under this program, parents are given a Crowd Risk placard that allows them to park in front of the emergency department and take the child directly to a private room to await treatment.

One of the PFAC efforts most directly affecting patient safety is the introduction of "patient safety rounds," in which staff and PFAC members personally inquire about potential safety issues on each unit.

PFAC members must be adults and are selected based on their willingness to participate in various hospital activities and their ability to communicate clearly. They go through a general orientation and must sign the same confidentiality statement as hospital staff. The council members also undergo training for compliance with the Health Insurance Portability and Accountability Act.

Mary-Dana Gershanoff is a former breast cancer patient at Dana-Farber and has been a member of the PFAC since 2001. She says the members take the effort quite seriously and are not shy about providing input to the health care professionals who are used to making decisions for the patients. In addition, she has helped Dana-Farber by interviewing patients during patient safety rounds and role-playing the patient when staff were preparing to do similar interviews.

"We've seen that patients are eager to tell their stories if they can see that we are sincere in wanting to improve patient safety and their overall experience," she says.


For more information on working with patients and families, contact:

  • Maureen Connor, Vice President, Quality Improvement and Risk Management, Dana-Farber Cancer Institute, 44 Binney St., Boston, MA 02115. Telephone: (617) 632-4263.
  • Mary-Dana Gershanoff, Adult Patient and Family Advisory Council, Dana-Farber Cancer Institute, 44 Binney St., Boston, MA 02115. Telephone: (866) 408-3324.