Skip to main content

Advanced Search

Advanced Search

Current Filters

Filter your query

Publication Types



Newsletter Article


In Focus: Health Care Institutions Are Slowly Learning to Listen to Customers

Summary: While engaging patients and family members as equal partners in health care is essential to achieving quality and safety goals, few organizations today include their input at all levels of organizational decision-making. Those that do are finding they benefit from the time they invest, as the care process and system redesigns that result make patients more active participants in their care and improve their outcomes.

By Vida Foubister

Many hospitals have been slow to solicit patient input to improve the quality of their care for fear that doing so will be costly, invite complaints, and drain already limited staff time and resources. But research has found that feedback from patients and family members has the potential to improve patient safety and health outcomes while reducing operating costs. [1, 2, 3] Further, as consumers make more informed choices about where to receive care, hospitals with high rankings for patient satisfaction and quality are more likely to see their market share increase—making a compelling business case for institutions to reach out to their customers. [3]

Children's hospitals began to adopt patient- and family-centered care in the 1980s because they recognized that the input of parents and family members could improve the care of patients who were too young to tell physicians and nurses how they felt. According to a recent article in Pediatrics, including family members in these treatment discussions did not increase the time that the medical team spent with each patient. [4]

There have also been calls to move away from a traditional, paternalistic approach to medicine toward one that actively engages patients in their care. In a 2001 report, the Institute of Medicine concluded that a focus on patient-centered care was one of six interrelated factors constituting high-quality care. The World Health Organization's World Alliance for Patient Safety maintains that involving patients and family members prevents errors and is actively working to ensure they are at the core of the safety movement.

Yet, far too many adult facilities remain in the "dark ages," says Barbara Balik, R.N., M.S., Ed.D., senior faculty with the Institute for Healthcare Improvement in Boston. "We're still trying to advocate for our patients' voices to be heard."

Impetus for Change
Many of the hospitals that have become leaders in patient- and family-centered care were motivated to change their culture because of a catastrophic event, such as a patient death following an error, or low patient satisfaction ratings. Their leaders recognized that without completely modifying their approach, consumers would seek care elsewhere.

The Dana-Farber Cancer Institute in Boston increased patient involvement after concerns were raised about the quality of care in the mid-1990s, following the preventable death of one patient and the serious injury of another.

An adult Patient and Family Advisory Council, called PFAC, was formed soon after that to set annual goals for improving the patient care experience; members include former patients, their family members, executive leadership, and staff. A pediatric advisory council was established a year later. The PFACs often identify issues that have been overlooked internally and work together with the institution to address them. They have advocated for changes such as more personal billing letters, shorter emergency department wait times, and the inclusion of complementary therapy services.

Patients and family members go through an orientation prior to serving on these councils. Dana-Farber also developed a handbook outlining their roles and responsibilities, the importance of which is respected throughout the institution. "The voice of the patient trumps everyone else's voice," says Janet Porter, Ph.D., the institute's executive vice-president and chief operating officer. "At Dana-Farber, all you have to say is this is what the patient wants and then it happens."

A Means to Patient Engagement
Vanderbilt University Medical Center in Nashville, Tenn., is working on patient- and family-centered care as part of an overarching goal to provide personalized medicine throughout its system. The institution believes that by getting patients more engaged in the care process, they will be more informed about their health needs and take an active part in decisions about their care.

Part of these efforts focus on ensuring family members—those people whom the patient identifies as family—are available to support patients in decisions about their care, says Terrell Smith, director of Patient and Family Centered Care at Vanderbilt University Hospital and the Clinics. The hospital abolished visiting hours for family members, allowing them to be with patients at any time. It also encourages family members to be present for medical rounds.

Based on feedback from its advisory council, the hospital designed the rooms in its new critical care center to accommodate a family member's overnight stay. "We had a couple who had been married 50 years and had never really been apart," Smith says. "He got to spend the night at the bedside before and after she had her valve replacement and it meant the world to them because she was scared."

Patient engagement is also encouraged through a personalized patient Web portal, which is designed to improve patients' understanding about their health and provide services more conveniently. Called My Health at Vanderbilt, it enables patients to view lab test results, contact their physicians, make appointments, access medical information, and pay bills. About 90,000 patients have signed up to access their health information through this site, including one whose questions about shading on an X-ray report led to the identification of a thyroid tumor, Smith says.

Vanderbilt's goal is to provide patients with the information necessary to become active partners in their health care, instead of relying on their doctors to make decisions for them. "There is a notable difference in the questions asked by patients who are frequent users of My Health at Vanderbilt," Smith says. "Their depth of understanding and their involvement in their care is greater. That's because the more information we give them—at a level they can understand—the more they can participate in a meaningful way in their care and decisions."

Providing Care Within the Context of Culture
At Southcentral Foundation in Anchorage, Alaska, it was the system's change from federal to Alaska Native ownership and management in 1999 that led to a transformation in its approach to care. The ownership change enabled the system to partner with patients—now called customer-owners—to design the system in accordance with Native values. Patients, in partnership with Southcentral providers and employees, identified their top health concerns and developed systems, structures, and programs to address them. The eight priority areas that came out of this process include: domestic violence, cancer, suicide, substance abuse, obesity, diabetes, cardiovascular disease, and oral health.

Patient and family input has led to other changes that make the system more welcoming. These include incorporating "talking rooms" into the medical center's design for patients to use for discussions with caregivers when a physical exam isn't required. "We built our facilities around our culture, and part of our culture is we like to gather. So in our hospital you'll find a lot of gathering places," explains Katherine Gottlieb, M.B.A., president and CEO. "When we walk in the door, it feels like home."

Southcentral gathers information from patients and family members using a variety of methods, including advisory councils, surveys, focus groups, a toll-free hotline, and community events. It uses this information to learn what is working and what is not. It also draws on its staff members, about 60 percent of whom are Alaska Native/American Indian. Many of them are patients in the system. "You have these informal communication channels which are really valid ways in which we can gauge community sentiment," says Charles Clement, Southcentral's chief operating officer.

As part of its redesign, medical care is now organized around primary care teams, which include physicians, chronic and preventive disease managers, medical assistants, behavioral health consultants, and dieticians. The system has also integrated complementary medicine and traditional healing into its care, based on feedback from patients. The number of emergency department and urgent care visits has dropped 40 percent from 1999 to 2001 and remained steady as a result of these changes, which include a substantial increase in the availability of same-day appointments. The number of primary care visits has also decreased, as patients now feel they have a primary care provider who is able to meet more of their health needs at each visit. "It's a partnership now, the journey of wellness," Gottlieb says.

Hospitals Benefit from Engaging Patients
Some institutions have found that involving patients in quality improvement leads to shorter lengths of stays, lower costs per case, shifts from higher-cost staff to lower-cost staff in patient-centered units, and higher than average overall patient satisfaction scores. [5] When Magee-Womens Hospital of U.P.M.C. in Pittsburgh, Pa., piloted a multifaceted patient-and family-centered care initiative in its joint replacement program, there were both clinical and operational benefits. [6] As part of this initiative, patient-centered care teams were developed; priorities and goals were set for providing care that met patient and family members' needs; and the care teams were trained on the Walt Disney Co.'s model of treating customers well from their first experience to their last, with the goal of constantly exceeding expectations. The results include:

  • Patients had an overall infection rate of 0.3 percent, as compared with national rates of 0.86 to 2.52 percent for total knee replacement and 0.88 to 2.26 percent for total hip replacement.
  • Staff had high compliance with evidence-based protocols: 98 percent of patients received antibiotics within the one-hour window before surgery and the vast majority of this use was discontinued within 24 hours after surgery (93 percent for hip replacement patients and 94 percent for knee replacement patients); also the appropriate antibiotic was used for 99 percent of total hip replacement patients and 98 percent of total knee replacement patients.
  • The average length of stay was 2.8 days for total knee replacement and 2.7 days for total hip replacement, compared with national averages of 3.9 days and 5.0 days, respectively.
  • Patients had a high functional status, with 93 percent walking without handheld assistance at the time of discharge.
  • Their discharge-to-home rates were also well above average, with 91 percent of patients undergoing total joint replacement being discharged directly to home. This compares with national averages of 29 percent for patients undergoing total knee replacement and 23 percent of those undergoing total hip replacement.
  • The program achieved a mean overall patient satisfaction score of 91.4.

Top-Down Commitment Required
To achieve the benefits of patient input, the senior leaders of health care institutions must fully embrace the point of view of patients and family members, says Vanderbilt's Smith.

Organizations that are committed to this approach have the voice of the patient in everything they do, Porter adds. "You have to be able to say, 'I do not know best. I have to have the patient in the room to tell me,'" she says.

This means that patients are involved in decisions at the front end. "The most progressive organizations follow the saying 'nothing about me without me,'" Balik says. "If someone says, 'Well, we need to design a new program,' the first question is: 'Who are the patients and family members who are going to help us with this?'"

To do this, health care organizations need to identify patients and family members to serve on advisory councils and establish guidelines that outline the organization's expectations for them, such as service terms and renewability, attendance requirements, and expectations for participation on committees, task forces, or projects. Dana-Farber's PFAC meetings are not sessions to air grievances following perceived mistreatment, but rather focused workgroups with explicit guidelines on how to improve the care experience for all patients, Porter says.

Most advisory councils do not pay their members, even those who spend 20 to 30 hours a week volunteering at the facility, but many do reimburse for expenses such as parking and other costs to attend related meetings. There are some exceptions. Karen I. Wayman, Ph.D., director of family-centered care at Lucile Packard Children's Hospital at Stanford in Palo Alto, Calif., believes paying patients and family members for their time—through an hourly wage or small stipend—improves the sustainability of her program and attracts parents from a broader socioeconomic spectrum.

"What we think is important is that it's not just a parent sitting at a committee, it's a parent who has been trained in the philosophy of patient- and family-centered care," says Wayman. "We are using them to diffuse this philosophy throughout the institution."

Training of staff—including everyone from receptionists to nurses and physicians—on how to appropriately partner with patients and family members is also critical. When Vanderbilt moved from set family visiting hours to open hours to encourage family members to be present at the bedside, nurses were given tools to help them in this transition. "One of the nurses' concerns was that they would spend their entire shift trying to answer the family's questions and not be able to concentrate on critical care activities such as calibrating I.V. fluids," Smith says. In fact, nurses have found that the more continuous presence of family members has improved their relationship with them. "They know things because they were in the room and they can see firsthand how hard the nurses are working to care for their loved ones so it doesn't feel so adversarial," she says.

In some cases, patients and family members have improved the quality of their care by reminding staff members to adhere to safety guidelines, such as those for hand hygiene. At four South Jersey community hospitals, patients were told on admission to ask staff to wash their hands. During the six-week study, soap usage by health care workers increased by an average of 34 percent. [7]

The use of patient and family advisory councils can also give an institution's leadership a reliable and efficient way to find out what patients and their families want. "It's one central place to dock in and get an opinion. If you don't have that vehicle in place, you don't get the patient's opinion," Porter says.

Future Directions
There are some signs that more organizations might start taking patient- and family-centered care seriously. Among them is a shift among young, healthy, and affluent consumers to high-deductible heath plans, says Dean Halverson, author of Healthcare Tsunami: The Wave of Consumerism That Will Change U.S. Business. A recent survey he conducted in Wisconsin found that 44 percent of employers with more than 25 employees are offering high-deductible plans, and 38 percent of those that don't currently offer them plan to do so in the next two years.

"It's changing the expectation of the patient as to what they're going to get from that experience," Halverson says. While there is currently a divide in the way consumers and providers measure quality, he expects this will lessen as consumers become more knowledgeable about the quality and cost of care at different institutions. Others caution against relying on this approach, as high-deductible plans can increase affordability barriers.

Comparative data on how hospitals perform on measures of evidence-based care, patient experience, readmission and mortality rates, and costs also has begun to put pressure on health care providers to be more responsive to patients. There is a growing body of evidence that engaging patients in their care, particularly through efforts to increase patient activation, improve health literacy, and improve chronic care management, has an impact on health outcomes, Balik says. 

Other indicators that the concept of patient- and family- centered care is gaining ground include:

  • A supplemental set of health literacy questions are being created for the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey, developed by the Agency for Healthcare Research and Quality (AHRQ) and the Centers for Medicare and Medicaid Services. These questions, which are scheduled to be released this spring, will ask about patient–provider communication, discharge planning, and communication about medications, test results, and forms.
  • AHRQ is working on a manual to help health care organizations better tap into the expertise of patients and families.
  • The state of Massachusetts will require all acute, chronic, and long-term care hospitals to have a patient and family advisory council by Oct. 1, 2010.

As these consumer programs become more common, the staff leading them will need to ensure they maintain open communication with the patients and family members volunteering their time to help institutions improve. "It takes a lot of work," says Kris White, vice-president of patient affairs at Spectrum Health in Grand Rapids, Mich. "People underestimate the effort and the consistency of that effort."

Fortunately, there are many patients and family members willing to help. Christine Reilly, who lost her oldest son Michael to cancer at age 5, has been a member of Dana-Farber's pediatric PFAC since 2007. She credits her son's oncologist, who focused on treating the whole family and thus helped them to achieve goals such as seeing him graduate from preschool, for her involvement.

"The care that we experienced allowed my husband and me to make some really difficult decisions and not once have we second guessed them," says Reilly. "We were given support, education—what we chose was right for our family and our son and our situation. We were always treated with the most respect, the most dignity, and the most compassion."

This experience has motivated her to ensure parents seeking treatment for their children at the institution encounter the same—or better—care. "I do it because I want to give back, and if my story can help better the life of one cancer patient, for one treatment, then it was worth it," she says.

[1] Y. Longtin, H. Sax, L. L. Leape et al., Patient Participation: Current Knowledge and Applicability to Patient Safety, Mayo Clinic Proceedings, January 2010 85(1):53–62.
[2] M. Stewart, J. B. Brown, A. Donner et al. The Impact of Patient-Centered Care on Outcomes, Journal of Family Practice, September 2000 49(9):796–804.
[3] P. A. Charmel and S. B. Frampton, Building the Business Case for Patient-Centered Care: Patient-Centered Care Has the Potential to Reduce Adverse Events, Malpractice Claims, and Operating Costs While Improving Market Share, Healthcare Financial Management, March 2008.
[4] P. L. Aronson, J. Yau, M. A. Helfaer et al., Impact of Family Presence During Pediatric Intensive Care Unit Rounds on the Family and Medical Team, Pediatrics, October 2009 124(4):1119–25.
[5] S. Stone, Retrospective Evaluation of the Planetree Patient-Centered Model of Care Program's Impact on Inpatient Quality Outcomes, Ph.D. dissertation, Hahn School of Nursing and Health Science, University of San Diego, 2007.
[6] A. M. DiGioia III, Patient- and Family-Centered Care Initiative Is Associated with High Patient Satisfaction and Positive Outcomes for Total Joint Replacement Patients, Agency for Health Care Research and Quality Innovations Exchange, published online April 28, 2008.
[7] M. McGuckin, R. Waterman, L. Porten et al., Patient Education Model for Increasing Handwashing Compliance, American Journal of Infection Control, August 1999 27(4):309–14.

For more information

See: Institute for Family-Centered Care and IHI Web site
For comparative performance data for U.S. hospitals on measures of evidence-based care, patient experience, readmission and mortality rates, and costs, see The Commonwealth Fund's quality improvement resource,

Publication Details