The Patient Perspective

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For the past four years, Scott Viera has driven an hour north of his home in Attleboro, Mass., to get treatments for colo-rectal cancer at Boston’s Dana Farber Cancer Institute. Headed upstairs for chemotherapy one day, the Friendly’s Ice Cream district manager and Roger Williams University wrestling coach noticed a recruitment poster for the patient and family advisory council. His interest piqued, the father of two soon met with the committee’s co-chairs. “They had the same philosophy I had—that the next person who walks in the door should have as good or better care than we have,” he says. Viera has attended the council’s monthly 2 1/2-hour meetings ever since, and now serves as the senior co-chair.

Traditionally, healthcare providers have taken a Big Brother approach to their jobs: Clinicians do most of the talking, while healthcare is practiced upon passive patients. But partnering with patients and family members in a hospital’s administrative workings can build more effective care systems that are responsive to patients, says Beverley H. Johnson, president and chief executive officer of the Bethesda, Md.-based Institute for Family-Centered Care. “More often, we’re seeing that we get the best outcomes when the patient is part of the process,” she says. “We’ve missed a real ally to help us keep the system safe and really achieve quality.”

Despite the potential for improved outcomes—along with the unique perspective patients bring to the table—patient-centered care has been slow to catch on, says Lawrence Shulman, M.D., Dana Farber’s chief medical officer. Groups like Johnson’s, along with the Institute of Medicine and the Institute for Healthcare Improvement, have long promoted the need to involve patients in the design of hospital systems. But few have taken it as far as Dana Farber, where patients sit on more than 60 committees ranging from facility planning and design to the board-level quality assurance and risk management committee, which discusses sentinel events and leadership accountability. “It’s not that unusual to have a patient representative on a board or in a focus group, but it’s a different thing to have patient and family representatives at the heart of decision-making at the senior leadership level in the hospital,” says Laurel Simmons, a project director with the IHI.

Transitioning patients from simply rubber-stamping a few established plans to sitting on every hospital committee is not easy. Employees have to adjust to having patients in meetings, and executives must get comfortable with revealing highly sensitive information. But those obstacles can be overcome with careful planning and the right approach.

Challenge 1: Getting your head around it

John Robertstad, CEO of 76-staffed-bed Oconomowoc (Wis.) Memorial Hospital, compares the patient-centered effort to the early years of the quality movement. “At first blush the concept looks very complex, but once you get into it, you begin to see how much of it is common sense,” he says. Oconomowoc began the process about a year and a half ago, and spent most of the first year making sure people in the organization grasped the principles and concepts involved.

Oconomowoc clinicians and administrators visited organizations at various stages of implementation, including Dana Farber, where they met with council members and sat in on their meetings. “Taking the time to look at ways others have applied it allows the staff to discover how hospital processes can be changed,” Robertstad says.

Many hospital leaders struggle to think of patient involvement beyond focus groups, Shulman says. Actually seeing the expanded parameters at work that allow patients to play a serious role in making decisions from the ground up can have a major impact on how an organization’s own initiative evolves.

Challenge 2: Overcoming resistance

As with any project that hints of culture change, some level of resistance is inevitable. People may feel threatened by the new faces appearing in committee meetings. One common concern is that employees will not be free to voice their opinions among mixed company. “When we started, our senior staff members were extraordinarily uncomfortable with patients being in the room, and it lasted for a while until they got used to them being part of the process,” Shulman says.

Hospitals can help ease the transition into patient-centered initiatives by starting small and being mindful of patient placement. Simmons recommends beginning with projects that feel less high-risk from the hospital’s perspective, like redesigning patient information materials, then expanding once the initiative is working. Oconomowoc started with a construction and design committee, which Robertstad says has been successful because the work is very tangible.

Challenge 3: Making it more than lip service

Culture change puts the burden of proof squarely on executives’ shoulders. Only senior leaders can show employees that patient involvement is the way they intend to do business. The IHI has worked with many hospitals to recraft their mission and vision statements to emphasize the value of patient and family input. “C-suite leadership must say, ‘We’re paying attention to this, and we’re measuring it,’” says Simmons.

Leaders must also make sure that medical directors and others who sit on affected committees understand that some decisions will go the patients’ way. After some initial resistance, physician leaders at Dana Farber eventually accepted this concept, says Shulman, adding that backing patients’ decisions sends a strong message to both employees and the patients themselves. Patients’ work has to be real, Shulman says, or they will not be invested in it.

“When you have a culture that says patients need to be involved, then patients know we can say how we feel without retribution or without it being ‘yessed’ to death,” says Viera.

Challenge 4: Getting the right patient representatives

Once the decision is made to bring patients and family to the table, the challenge becomes recruitment and setting up a system for governing the group. Dana Farber chose the original council members in 1997, and since then the council has recruited for itself. Much of the recruiting takes place as members carry out one of their functions—doing rounds to talk to patients about their experience. “If someone has an ax to grind, we don’t want them as part of the council because that won’t help anybody,” says Viera.

Turnover on the advisory board is also essential, says Shulman. Dana Farber council members serve three-year terms, and co-chairs serve for two years. Once their term is over, members are placed on emeritus status, which precludes them from voting. “We guard against an ‘institutionalization’ of the council members because some of our most treasured members who’ve been on administrative committees for a long time start to sound like us, and we don’t want them to become disconnected from the patient and family member point of view,” he says.

Kara Olsen is a staff writer with HealthLeaders magazine and managing editor of HealthLeaders Online News. She may be reached at




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