Councils are important outlets for patient input

Providing access to sensitive information helps

Input from patients and family members who have gone through the cancer treatment experience at Dana-Farber Cancer Institute in Boston is important to leadership at the health care institution. That is why an Adult Patient and Family Advisory Council was established in 1997, and a Pediatric Patient and Family Advisory Council was formed three years later.

Each has 14-16 members who commit to attending a monthly meeting that is 3½ hours long. Those interested in sitting on the councils fill out an application.

"We are looking for people that have the time to commit back to the institution and really be advisors to us on almost every aspect of our work," says Karen A. Conley, RN, MS, AOCN, a nurse program manager for pediatric oncology and the administrative liaison for both councils. Her role as liaison is to make sure that council members are on the right hospital committees to provide appropriate feedback.

The councils are called upon to address issues and concerns the institution has as well as the concerns of patients and family members. As a result, they frequently have access to sensitive data. For example, members sit on the joint quality improvement and risk management committee, where they hear about quality improvement activities and risk management opportunities.

Council members also are involved in the institution’s care improvement teams, and they participate in any renovation or construction planning. Every major capital renovation project has to go through the patient and family advisory council for it to be approved.

Marketing campaigns frequently are run past the council members to get their impressions. The councils also review publications and letters for patients and families. Members sit on the patient education committee as well.

"We share our patient satisfaction data with them; and in our problem areas, they help us brainstorm ways to improve the scores," says Conley.

Members of the councils also produce a quarterly newsletter for patients and families called "Side by Side." Some are trained to do rounds in the waiting areas to elicit feedback from patients and family members.

Council members frequently bring up concerns they believe the institution needs to address. For example, they felt as if there was a lapse in the transition from the inpatient setting to the outpatient experience because a lot of home care agencies did not know how to take care of oncology patients. Therefore, the education department at Dana-Farber Cancer Institute partnered with the councils to sponsor a workshop for all home care providers on caring for the cancer patient at home.

The pediatric council members were concerned about bringing children with compromised immune systems from cancer treatments into the emergency department at Children’s Hospital Boston where they would be exposed to other sick children. As a result, a program was developed where families with a child undergoing cancer treatment were given placards to show the security guard at the emergency department door. Families with a placard would be ushered to the triage nurse, who would take them to a private room.

"We have involved council members in so many things and have taken so many of their suggestions that they see they aren’t just a token patient sitting on that committee but that we really listen to them and acknowledge them," says Conley.

At the last survey by the Oakbrook Terrace, IL-based Joint Commission on Accreditation of Healthcare Organizations, patient and family members sat at the table with the multidisciplinary teams so they were able to answer questions about the system. Also, they were present when the surveyors revealed the final score. "Never had a Joint Commission survey team had that experience before," says Conley.

Meetings run by members

To cover business in a timely manner, councils have subcommittees such as the arts and environment committee that looks at facility planning and art that goes into the institute. The council chair calls for reports from each subcommittee during monthly meetings. Council members not only run the meetings, they drive the agenda. Only groups who want feedback from the council are allowed to present. "The council decides what its priorities are going to be for the year," says Conley.

Each council has two co-chairs who work with Conley. She meets with them on a weekly basis to make sure things are moving along and plan for the next meeting.

Members of the adult council serve three-year terms, but they can remain on the committee as an emeritus member, which means they can attend meetings but they do not have a vote. The pediatric council has not evolved to this point yet but soon will implement this system to allow new council membership.

In addition to patients and families, several staff members are involved in the councils, including the chief medical officer and chief nurse.

The first council was organized at Dana-Farber Cancer Institute during a consolidation of adult cancer services between the institute and Brigham and Women’s Hospital. At that time, all inpatient beds were transferred to Brigham and Women’s Hospital, which alarmed patients. "We started having town meetings and found that patient and families had a lot to say," says Conley.

To help form the councils, the institute worked with the Institute for Family-Centered Care in Bethesda, MD.

The process has worked quite well for Dana-Farber Cancer Institute. "We have made improvements we never would have thought of without having patients and families sitting at the table with us. They open our eyes to all new issues and possibilities just by sitting at the table and listening to all we have to deal with and bringing the patient perspective with them," says Conley.


For more information on creating patient and family member councils, contact:

• Karen A. Conley, RN, MS, AOCN, Nurse Program Manager, pediatric Oncology, Administrative Liaison, Patient and Family Advisory Councils, Dana-Farber Cancer Institute, 44 Binney St., Dana 352, Boston, MA 02115. Telephone: (671) 632-4685. E-mail: