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Making sure all voices are heard
Preparation for committee work a must
Some health care facilities provide medical treatment to people throughout the United States, while others serve those who live in the surrounding neighborhood. Whatever the demographics, it is important for a family advisory council to represent the diversity of patients and families served, states Cezanne Garcia, MPH, senior program and resource specialist for the Institute of Family Centered Care in Bethesda, MD.
When Garcia worked at the University of Washington Medical Center in Seattle, getting all voices to the table was a constant effort because the institution served a five-state area. It is difficult for a family from Alaska to sit on a council that meets monthly in the state of Washington, she explains.
Some methods used to remedy the situation included bringing patient satisfaction data or comment cards from patients who lived some distance away to meetings. This information would help the council work on better ways to serve these families, says Garcia.
One committee that included family advisory members decided to trial a partnership system where a family advisory member in Washington would call a family advisory member in Alaska to discuss an issue and then convey his or her perspective at the meeting.
In addition to hearing from a good representation of the patients and families served, each council member must have an opportunity to provide input on the projects, issues, policies, and proposals discussed at each meeting. Time constraints make this difficult; therefore, meetings must be conducted efficiently. At Cincinnati (OH) Children's Hospital Medical Center, the co-chairs sit on opposite sides of the room and monitor the discussion to ensure everyone has a turn to speak.
With 39 people on the council, this can be difficult, but the rule is that no one provides input a second time on a topic until everyone has spoken. This year, a system of follow-up discussion via e-mail was initiated, so council members could make points they did not get a chance to make during the meeting or contribute something that occurred to them after the meeting, says Joy Bennett, a parent coordinator and co-chair of the Family Advisory Council.
Another important element of a successful council is preparing patient and family members. Without an orientation, it takes a long time to understand how the council works, says Bennett. Bennett and her co-chair, Kay Fricke, who is also a parent coordinator, started with a brief one-hour session immediately prior to the first council meeting.
At the request of patient and family council members, they created a two-hour orientation on a separate day. This covers such topics as confidentiality, because many of the topics discussed at meetings cannot be made public.
All family leaders at The Children's Hospital of Philadelphia attend an orientation whether they sit on the family advisory council or fill some other role. The purpose is to help them understand some of the language and principles of family-centered care, so everyone within the organization has the same frame of reference, says Michele Lloyd, senior vice president for Patient Care and Family Services at The Children's Hospital of Philadelphia.
"The orientation is intended to help families take on a new role. While they are experts in being a family with chronic or complex illness, they have not served in a health care organization in a leadership role, and the orientation helps them take on that role," explains Lloyd.