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Profiles of Change

Dana-Farber Cancer Institute, Boston, Massachusetts

The mission of Dana-Farber Cancer Institute is to provide expert, compassionate care to children and adults with cancer while advancing the understanding, diagnosis, treatment, cure, and prevention of cancer and related diseases. It is an affiliate of Harvard Medical School and a Comprehensive Cancer Center designated by the National Cancer Institute, providing training for physicians and scientists, designing programs to promote public health particularly among high-risk and underserved populations, and disseminating innovative patient therapies and scientific discoveries throughout the United States and the world.

In 1997-98 and again in 2001, the Institute for Patient- and Family-Centered Care provided technical assistance to staff of the Longwood campus. The purpose of this assistance was to help ensure patient and family involvement in planning, implementation, and evaluation of the joint venture and to advance the understanding of and commitment to providing cancer care in a patient- and family-centered manner.

pamplets onaAcupuncture and music therapyBuilding a vision of an ideal adult oncology program. As one of the initial activities, the Institute for Patient- and Family-Centered Care facilitated a session in which patients and families were asked to envision the ideal experience for cancer care. Patients and families then participated in the development of tools to measure patient perceptions of and satisfaction with care.

Patients and families also had key roles in program development. For example, they helped revise the patient representative program. They were part of discussions that led to the formation of a pain and symptom management team. Family members are now working with this team to discuss such issues as the role of traditional and complementary therapies. With leadership from patients and families, the Zakim Center for Integrative Therapies was established at Dana-Farber. Families also participated in discussions about hospice care and how to structure psychosocial programming for cancer patients and families. They are currently involved in developing programs to deal with end-of-life situations. The purpose is to help patients and families make the best use of the time that a cancer patient may have in an open and honest way.

Developing hospital policies and procedures. Patients and families helped revise visiting policies to reflect family-centered principles. As a result, these policies now support and protect patients and recognize the importance of the family’s presence, however the patient defines his or her family. Families participated in the redesign of the admissions process and contributed suggestions for a new approach for handling emergency care for cancer patients. They were members of the Move Team, which planned the transfer of patients between hospitals. Having demonstrated the value of consumer/professional collaboration in the first 12 to 18 months of the merger, patients and families were asked to serve on three key standing committees-clinical quality, complementary therapies, and facilities.

Facility design. Patients and families have helped plan expansions and satellites for the Blum Patient and Family Resource Center, which enhances their access to clinical and research information as well as to practical supports in the hospital and in the community.

collage of images from Dana-Farber Center
For More Information Please Visit the Maxwell and Eleanor Blum Patient and Family Learning Center. To learn more about the Dana-Farber Patient and Family Resource Center please visit our Special Topics section (then click on the FRC / Boston, MA link).

They also participated in the design of outpatient care, infusion areas, and radiation treatment facilities by providing input on architects' plans and space planning and helping select furniture, fixtures, fabric, and art. As a result of the successful outcome of this collaborative design planning process, an Arts and Environment Committee was created and patients were invited to serve on it. The suggestions of patients and family members led to significant changes in signage and in the placement and type of artwork displayed. At family members' suggestion, for example, flyers of a medical nature are no longer posted in patient elevators. Flyers of this nature are now posted in staff elevators only.

Notices under sign reading Post patient Related notices Here flyers under sign reading Post Staff & Scientific Notices
At family members’ suggestion, flyers of a medical nature are no longer posted in patient elevators. Flyers of this nature are now posted in staff elevators only.

Staff recruitment. Patients and families are involved in staff recruitment and training. For example, a patient participated in the interviewing process for nursing leadership and other nursing positions. Family members were involved in the search for a director of social services. They are developing a curriculum for oncology fellows that focuses on communication and information sharing. They have also conducted educational sessions for surgical residents and fellows.

A place for patients and families in the hospital's organizational structure for quality. Hospital management staff formalized the participation of patients and families by making the Patient and Family Advisory Council a part of the quality improvement structure for the Joint Venture as well as for the Dana-Farber Cancer Institute itself. Patients and family members serve on the Adult Oncology Clinical Services Quality Improvement Committee. In this capacity, they review patient falls and accidents, medication errors, and patient survey results. Patients and family members are involved in care improvement teams on the inpatient oncology units at BWH. Patients and family members also serve on the Minority Recruitment Committee and the Patient/Family Education Council. They participated in a recent visit of a The Joint Commission survey team. The team was impressed by the participation of the patient and family advisors.

Adult Patient and Family Advisory Council. The Council, which began as a large, informal workgroup, currently has a membership of 15 patients and family members and four non-voting staff members (chief of nursing and patient care services, vice chair of clinical services for adult oncology, director of patient and family support services, and a staff person from quality assurance). Membership terms are for one year, renewable up to three years. The Council reports to the hospital's senior clinical and administrative staff. In 2000, during a renovation to the outpatient area, space was allocated for a Council office.

Plaque reading 'G160 Patient and Family Advisory Council' Plaque reading 'The Adult Patient and Family Advisory Council'
In 2000, during a renovation to the outpatient area, space was allocated for a Council office.

The Patient and Family Advisory Council meets monthly. It has four subcommittees. Their names and areas of responsibility are as follows:

  • Communications–to build and maintain visibility for the Council and its work.
  • Recruitment–to identify and recruit patients and family members with the skills and interest to serve as advisors.
  • Patients as Educators–to meet with first-year oncology fellows and discuss communication issues, pain management, and end-of-life care.
  • Rounding–to reach out to current patients and families in both inpatient and outpatient settings, and learn about the experience of care, how it is working, and how it could be improved.
Town meeting announcement flyer
To stay further connected, the Patient and Family Advisory Council holds regular meetings.

Other issues addressed by the Council include:

  • Improving parking for ambulatory patients.
  • Changing the billing system and the ways information is shared with patients and families.
  • Expediting emergency admissions for neutropenic patients.
  • Reducing clinic waiting times. (Patients and family members studied the ambulatory system of care and the data they collected and their recommendations for change had a significant impact on clinic policies and expectations of physicians and other staff.)
  • Clarifying for patients and families the roles and responsibilities of members of the interdisciplinary team.
cover of 'Your Role in Safe Medication Use'
Along with Patient and Family Advisory Councils across North America, Dana-Farber Council members participated in the development of the brochure, Your Role in Safe Medication Use: A Guide for Patients and Families, a project of the Massachusetts Hospital Association.

Side by Side. A newsletter, Side by Side, is written and edited by members of the Patient and Family Advisory Council. It is published quarterly and disseminated to more than 7,000 people.


Family-Centered Care in Pediatrics
Pediatric Patient and Family Advisory Council of the Jimmy Fund Clinic at Dana-Farber and the pediatric units at Childrenās Hospital, Boston, Massachusetts

The achievements of the Patient Advisory Council inspired the development of a similar group focusing on the care of children. Formed in 1999, the Pediatric Patient and Family Advisory Council serves patients in the Jimmy Fund Clinic at Dana-Farber and the oncology units at the Children's Hospital in Boston. The Council is composed primarily of parents of children with cancer and of some older patients. Members have dealt with topics such as improving emergency department arrivals and expediting patient discharges. The Pediatric Council's goal is to improve hospital programs and policies to be responsive and “user-friendly” for children and families.

Since the pediatric oncology program is a collaborative endeavor with Children’s Hospital in Boston, some of the Council’s activities deal with issues at Children’s Hospital. Among the Council’s many accomplishments, are:

  • Revamped patient passage through the Emergency Room.
  • Changed discharge process at Children's Hospital.
  • Presented End of Treatment initiative to Clinical Conference Committee.
  • Conducted a teen survey.
  • Published a Council introductory letter in new patient handbooks.
  • Set up phone line for patients and families to access PPFAC.
  • Participated in the design of the Resource Room at Children's Hospital.
  • Acquired reference material for the Resource Room.
  • Promoted nutrition services at the Jimmy Fund Clinic.
  • Promoted complementary therapies at the Jimmy Fund Clinic.
  • Worked on passage of the Pediatric Palliative Care Bill.
  • Consulted on the new phone system at the Jimmy Fund Clinic.
  • Worked on waiting issues.
  • Developed an End of Treatment Transition Program.
  • Assigned a Council member "on-site" at the Jimmy Fund Clinic to discuss the role of the Council and bring issues from families to the Council.
  • Sent a representative of the Council to all pediatric Clinical Operations Group meetings.
  • Participated in the planning of renovations for the clinic and the Radiation Therapy Suite.
Formed in 1999, the Pediatric Patient and Family Advisory Council serves patients in the Jimmy Fund Clinic at Dana-Farber and the oncology units at the Children's Hospital in Boston.