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How Patient and Family Advisors Can Improve Quality
, 15 2008

A new movement is spreading in the health care industryone in which hospitals are giving patients and their families a more powerful voice in the patient care experience. Hospital leaders are enlisting patients and families to serve on advisory councils that provide input into a multitude of hospital areas, from safety and quality measures, as well as hospital design, building and expansion projects, to the hiring of hospital leaders, the hospital admission process, clinical trial design and medical resident training. Take Hollis Ryan, who has had her share of experiences with the health care system. She had become accustomed to accepting doctors and nurses as the authorities, and herself as merely a bystander in her own careto listen and do as she was told.

So when her son was admitted to H. Lee Moffitt Cancer Center and Research Institute in Tampa, Fla., for brain cancer, she was not prepared for the experience that was about to unfold. The doctors and nurses engaged her in the care process. They asked her questions, they listened to her opinions and they discussed the treatment options openly and thoroughly throughout her sons treatment. In the past, I felt like I was always standing on the outside, looking in, she says. Suddenly, I was a part of the care process. They removed that veil of mystery that had shrouded my health care experiences for most of my life. But Ryans positive experience did not stop there. She was later asked to share her experiences at Moffitt and to provide suggestions for improving the patient and family experience by serving on a Patient and Family Advisory Council. What amazed me was that this was a committee that was made up of a broad perspective of leaders at the hospital that could get things done, she says. It was very apparent to me that they cared about my opinions and that they were serious about making changes. The Institute for Family-Centered Care in Bethesda, Md., a not-for-profit group that has created many key principles behind patient- and family-centered care, is encouraging hospitals nationwide to create such patient and family advisory groups to help them improve patient outcomes. Increasingly, the voice of patients and families is being recognized by hospital leaders and trustees as a valuable tool to help hospitals bolster patient satisfaction, improve safety and quality, prevent malpractice litigation and reduce costs by streamlining care delivery. It gives leadership a chance to hear firsthand, the good and the bad, says Dick Scheumann, an 18-year board member of the University of Washington Medical Center (UWMC), in Seattle, and a four-year member of its Patient and Family Advisory Council Steering Committee. [Health care delivery] is a very competitive business and this is a way to maintain your bottom line and develop satisfied customers, he says. The Joint Commission and the Society for Critical Care Medicine endorse the model, and the American Hospital Association has partnered with the Institute for Healthcare Improvement to develop tools to help health care providers accelerate their efforts to provide more patient- and family-centered care. In addition, the Centers for Medicare & Medicaid Services (CMS) recently announced that it plans to condition full payment updates in part on hospitals disclosure of patient satisfaction datayet another impetus for hospitals to look for new ways to boost patient satisfaction. The creation of patient and family advisory groups is a first and critical component for implementing the total concept of patient- and family-centered care, says Beverly Johnson, president and CEO of the Institute for Family-Centered Care. Its how you will move it forward. Patient- and family-centered care involves integrating patients and their families into medical care by supporting them in becoming active participants in their own health care experience. The model is grounded in several key principles for providers that include: dignity and respect toward patients and families; open and timely information-sharing; active patient and family participation in care and decision-making; and collaboration with patients and families on an institution-wide basis in areas such as policy and program development, facility design, professional education and the delivery of care. Improving Patient Safety and Quality Every hospital of the future should be orienting its board as to what patient-centered care is and how it should be implemented in their organization, Johnson says. Patients and families bring an essential perspective about care that is critical to ensuring safety and quality and to ensuring that a hospitals finite resources are being used wisely. She adds that hospitals that invite the input and perspectives of patients and families can help curb the tide of medical errors. Sometimes, when you get so close to a problem and become so invested in the system, you lose perspective, Johnson says. We need the voice of patients together with health care professionals to understand current practices and tap into patient insights to find solutions on how to fix it. It was, in part, this goal of stemming potential medical errors, that motivated UWMC to begin employing patient and family advisors in 2002. The hospital now has some 60 to 70 advisors serving on more than 25 operational committees, including patient safety, education, ethics, grievance and hospital aesthetics. Stephen Zieniewicz, UWMCs executive director, believes the advisors are having an impact. Patient and family involvement in their health care has been shown to greatly increase patient safety, Zieniewicz says, adding that such involvement has helped reduce the number of falls, ensures that patients understand care plan instructions and has contributed to reduced medical errors. Advisory councils are firmly implanted at UWMC, he says. The councils report to the patient- and family-centered care steering committee and receive guidance and suggestions from the committee. The steering committee, in turn, is part of the medical centers quality improvement structure and includes members from all areas of the hospitalfrom the medical director to the chief nursing officer to department heads and nurse managers. This ensures that the work and philosophy of the councils is disseminated and embraced on a hospitalwide basis. The advisory councils include patients and family members as well as a mix of clinical and administrative representatives. A physician is represented on each committee and a board member sits on the patient- and family-centered care steering committee. While advisory groups are empowered to make departmental changes that evolve from their councils, the steering committee can approve larger, hospital-wide initiatives and provide support for implementation. Patients and families are important stakeholders that have been missing from the discussion on how to improve quality of care, explains Cezanne Garcia, associate director of the Department of Patient and Family-Centered Care and Education at UWMC. We have found that they can help us identify issues and needs and develop appropriate solutions. Suggestions and insights provided by patient and family advisors go beyond safety, and can also contribute greatly to the care experience and ease of navigating the care process, Garcia says. For instance, at the urging of several patient advisors, UWMC recently rolled out hospital-wide meal room service, which allows patients to order their meals from a daily menu whenever they are ready to eat. Garcia says previously, the hospital would receive frequent complaints about menu choices and timing of meals, as well as reports that meals arrived cold. Unless you have never been a patient at a hospital, you might not understand how important these issues are, he says. What [patients] eat and when [they] eat can vary greatly depending on the patient, their treatment protocol and how he or she is feeling on that particular day, Garcia explains. Based on another advisory council recommendation, the hospital developed a peer-to-peer mentor program that pairs families of infants previously hospitalized in UWMCs neonatal ICU with new families to orient and support them during a stressful, emotional and uncertain time. Other patient advisory councils have helped develop a patient and visitor navigation guide to the medical centers services; helped change the waiting room procedure for expectant mothers who had often previously shared the room with mothers who had decided to terminate their pregnancies because of genetic problems; and are helping to expand the use of rapid response teams at UWMC. Patient and family advisors on the hospitals ethics and grievance committees are also supporting creative solutions to offer restitution to families who have complaints against the hospital. During a time when many academic medical centers are seeing an increase in lawsuits, MCG Health System in Augusta, Ga., has seen a steady drop over the past five years, due in large part to working more closely with its patients and families. MCG, which is now noted as the most cost-efficient hospital in the University HealthSystem Consortium (an alliance of 97 academic medical centers and 153 affiliated hospitals, representing approximately 90 percent of the nations not-for-profit academic medical centers), decided to introduce the patient- and family-centered model in conjunction with the remodeling and redesign of its neuro-ICU in 2003. The hospital started by consulting with former patients and families as well as staff members for recommendations on how to provide the best patient and family experience in its facility. After the physical expansion was completed, the hospital soon began to see a transformation in the quality of care as well. Patient satisfaction increased from the 10th to the 99th percentile; length of stay decreased by 50 percent; discharge volume increased by 15.5 percent; medical errors were reduced by 62 percent; and staff vacancy rates dropped from 7 percent to zero. Improving the Patient Experience Before instituting patient and family advisors at H. Lee Moffitt Cancer Center, Nancy Newman, Moffitts director of patient support services, sought the approval of senior leadership and the board of directors. They thought it was a great idea that supported our mission of providing compassionate care and really embraced it, she says. Endorsement of patient and family advisory councils by the board of directors and senior managers is key to shaping the organizational structure of health care organizations, Johnson says. If senior leaders dont encourage and support the practice, its not going to happen in a sustained and effective way. With the boards blessing, patient and family advisors have been integrated into 12 major hospital committees at Moffitt that include service excellence, quality and performance improvement, hospital operations, the clinical steering committee, a hiring committee and the quality committee of the board. Advisors are also asked to serve on other hospital committees as needed. Patient and family advisory committee progress and patient satisfaction scores are reported to the board on a quarterly basis. This is one of the most important reports we receive, says Beth Houghton, board chair at Moffitt. Patient assessment as to how we are doing is very important and is something we watch very closely. From a boards perspective, the greater inclusion of patients and families into the care process and operations of the hospital was a natural. This is a group whose feedback we highly value. Patient and family advisors are selected carefully after a series of interviews and an eye for specific qualities and competencies to find the right fit, Newman says. The hospital considers race, ethnicity, age, employment background and other factors to create a diverse group. Advisors also are screened for competencies such as the ability to see beyond the problem and to work in a group, good judgment, the ability to represent the views of others, and problem-solving skills. All patient and family advisors participate in a hospital orientation to ensure they are HIPAA-compliant and trained in important hospital policies and procedures. We want people who can provide a balanced perspective and constructive input, Newman explains. In some cases, Moffitt has benefited from patient advisors with specific professional backgrounds. For instance, Ron Giovannelli, a civil engineer, is a former patient at Moffitt who often provides input into hospital expansion and remodeling projects. After receiving treatment in the radiation therapy department, he was able to provide feedback about improving its layout and design to make it more patient-friendly. Moffitt has made many important changes since enlisting the support of patient and family advisors. Some of these include: developing portals that allow patients and families to manage their own appointments and view lab test results, medication orders, etc., via a protected Internet site; redesigning hospital signage to improve accessibility; increasing valet parking hours to accommodate patients with late infusion treatments; changing the process of shift changes to occur in patients rooms instead of at the nurses station so that patients and families understand care plans and changes; training former patients to provide counseling to other patients; counseling medical students on how to deliver bad news to patients and their families; and providing input from patients and families into clinical trial design to encourage greater participation by patients. We had so many early successes that we started getting more requests from all areas of the hospital than we had advisors, Newman says. This has been a very positive movement that really articulates our values and brings our patients to the table. Mark Pizzo, a U.S. Federal Magistrate for the middle district of Florida, as well as a patient advisor and member of Moffitts board, is used to commanding the floor. But when he was asked to provide his opinion in a room full of health care leaders and clinicians at one of his early safety committee meetings, in which he serves as a family advisor, he at first froze briefly. What insight could I provide that they didnt already know? he asked himself. As it turns outquite a lot. When you bring someone to the table whos had a personal experience, that experience brings a reality to the situation, Pizzo says. Everyone listened intently. It was comforting to know that these people actually cared about what I had to say. Since implementing the patient advisory groups, Moffitt has seen its patient satisfaction scores climb from 95 percent to 98 percent in the last three years. We believe that we can learn tremendous things by listening to patients and families, says Nick Porter, executive vice president for Institutional Advancement and Corporate Relations at Moffitt. Their insights and perceptions are very important to us. They are the authorities as to how well we are accomplishing our vision of providing compassionate care and improving safety and quality of care. This is certainly the wave of the future, Giovannelli agrees. Wouldnt you rather go to a hospital where your point of view is taken into consideration? It just makes sense. Susan Meyers is a writer based in Omaha, Neb. This article 1st appeared in the April 2008 issue of Trustee Magazine.

: Susan Meyers
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