Hospital leaders who are placing patients and family members on advisory councils, rounding and changing shifts at the bedside, and creating patient-activated, rapid-response teams have seen increased patient and staff satisfaction, improved clinical outcomes and decreased costs of care.

Suffering from liver disease that required a transplant, the newborn patient was kept in a poorly lighted hospital room with four other children, where the mother could visit for just two hours a day. The child and parents were miserable.

Eventually, the hospital moved the baby to another location, where the rules were only slightly less stringent. Years later, the family’s experience still haunts David Bailey, M.D., who was on that hospital’s medical staff and is now the chief executive of Nemours Children’s Health System.

“At the time, it became all too clear to me that those rules were set up to make staffing easier, to make staffing more predictable, to make the process more efficient, and they just didn’t take into account the patient, which is why we’re there in the first place,” he says. “It made me almost militant in thinking about how the health system needs to change to better serve those we have the privilege of serving.”

Under Bailey’s leadership, Nemours, with hospitals in Orlando, Fla., and Wilmington, Del., strives to put patients and families at the center of its organizational structure through numerous advisory councils, tapping them as consultants when building facilities and engaging them in clinicians’ change-of-shift reports by moving those conversations, which typically take place outside the patient room, to the bedside.

As hospitals reorient themselves toward value and a more consumer-based approach to care, patients will play a crucial role. Encouraging them and their families to become active participants in decision-making about everything from facility design to their own treatment options can boost clinical outcomes, reduce costs and improve patient satisfaction, according to a recent report by the American Hospital Association’s Health Research & Educational Trust.

At the moment, few hospitals employ all the recommended strategies to better engage patients. In a survey completed in March, HRET asked nearly 1,500 hospitals if they had implemented 19 different engagement practices. Hospitals could score anywhere from zero to 2 on each item, with the bottom score representing “unknown” or “no patient engagement,” and the top tally signifying maximum or hospitalwide engagement. On average, respondents scored an unimpressive 18.4 out of a possible 38.

“We’ve got a big difference between what we think all of them should be doing vs. where the average is today,” says HRET President Maulik Joshi.

It Starts at the Top

A failure of leadership to make engaging patients a priority is mainly to blame. According to the HRET survey, the top three barriers to patient and family engagement are competing organizational priorities, the time it takes to implement advisory programs, and time pressures that discourage including patients in rounding or change-of-shift reports.

But at forward-thinking organizations like the University of Michigan Health System in Ann Arbor, a strategic vision and determined executives have made an enormous difference. UMHS appointed a group of C-suite members to serve as “barrier busters” any time an initiative hits a wall, says Kelly Parent, patient- and family-centered care program manager.

The efforts — comprising 32 advisory councils and a 200-member “e-faculty” to poll on issues over the Web — have paid dividends, bolstering patient and staff satisfaction, preventing medical errors and improving outcomes.

“Every other industry incorporates the customers’ voice and engages them both at the point of service, as well as in the planning stages for future products,” Parent says. “In health care, we’ve tended to just say, ‘We know what’s best for our patients and families and we’ll tell you.’ ”

At UMHS, “We’re engaging those voices at the bedside, the clinics, in the board room, and asking, ‘Where can we make things better? How can we prevent this from happening?’ ” she says. “If you don’t have the other side of the bed’s voice involved in this, you’re not going to get the full picture.”

At the Organizational Level

Placing patients and family members on advisory committees, common for years in hospitals, has evolved recently. Where those panels once might have served to promote the CEO’s pet projects or placate unhappy patients, today’s panels have a real say in a wide range of initiatives. And hospital leaders already are witnessing the powerful impact they have across an entire organization.

At two-hospital Georgia Regents Health System in Augusta, for instance, patient engagement efforts are credited with steadily reducing the number of malpractice lawsuits and improving operational efficiency over a five-year period. In another three-year period in the early 2000s, the health system increased patient satisfaction while limiting medical errors, according to the AHA’s report “Engaging Health Care Users: A Framework for Healthy Individuals and Communities.”

All told, GRHealth has some 135 patient and family advisers, and more than 30 advisory councils, says T. Nicole Johnson-Boatwright, program coordinator of patient- and family-centered care. She is tasked with ensuring that advisers inject the patient perspective into all aspects of the system, from policies and programs to construction of new facilities. “They are pretty much in everything we do,” Johnson-Boatwright says.

Advisers may speak with new medical residents entering the organization. They come along on rounds. They sit in on interviews for new directors, and they travel around the nation with GRHealth leaders to spread the story of patient-centered care. They have even selected the architect for a new cancer center.

Advisers also have pinpointed seemingly little things that negatively impact the care experience. Receptionists at clinics now write descriptions of patients during intake so nurses can walk right up to them, rather than shouting names from a doorway.

Nobody Wants the Wild West

Johnson-Boatwright encourages leaders to involve patients and their families from the very beginning of developing and hardwiring the organizational engagement strategy — and not to think of it as temporary strategy that eventually will run its course.

“It’s very important to know that patient- and family-centered care is a journey, not a destination that you just arrive at because you get patients and families involved,” she says.

Putting a point person in place can prove essential to starting and sustaining a hospital’s patient engagement road map. UMHS’ Parent says a dedicated staff member can spend all of his or her time overseeing patient- and family-centered care initiatives and drive the organization’s strategic vision, without getting pulled aside by other daily duties. Parent — who originally connected with UMHS when her 14-month-old daughter was being treated for brain cancer 10 years ago — now works on staff helping to coordinate the 32 advisory councils.

The first step is developing an infrastructure for bringing aboard and training advisers. “We can’t just have the Wild West of people saying, ‘Hey, anyone in this waiting room, do you want to come sit on a committee?’ ” Parent says. “We have to make sure they are going to be constructive. ... and we have to make sure they know how to participate. That’s where setting up the structure, allowing us to bring people on in very clear and consistent ways, is really reassuring for our staff as well.”

GRHealth picks its advisers through various means, such as training physicians to spot ideal candidates and administering surveys to patients and families. To keep members on track, it sets goals and strict agendas for advisory council meetings. Each council reports to the system’s executive advisory councils to gauge progress.

UMHS’s strategic vision has helped to drive the organization toward a slew of other methods of engaging patients. They include using social media and rethinking visitation policies, both recommended strategies in HRET’s 2013 leadership guide to patient engagement. UMHS recognizes gay marriage in its visitation policies, regardless of the state’s stance on it. And it was among the first to eliminate restricted visitation hours.

A task force will determine ways to connect sick moms on one patient floor with sicker newborns in the neonatal intensive care unit using such electronic tools as webcams and social media. At the suggestion of one patient, UMHS developed a private Facebook page for staff members and advisers to connect in a more timely and convenient fashion. Plus, the health system has instituted what it calls e-faculty, allowing a select group of patient advisers to tune into meetings online.

At Nemours Children’s Health System in Florida, a hospital staffer can poll members of the virtual advisory council about an issue over the Web and get responses from 50 to 100 families within hours.

Nemours is expanding its Delaware hospital, and the project architect has used the channel to survey parents on questions about doors and parking, says Michael Campbell, Nemours’ director of patient- and family-centered care. “You can continue to go back to that well because the families are more than happy to give their input,” he says. “They want it to be better tomorrow for another child who’s going to walk in the same steps,” he says.

Nemours is always looking to add contributors. “I’m a firm believer that there cannot be too many voices around the table,” Campbell says, “even if it’s sometimes difficult to corral those voices in a meaningful way, so that the time is value-added for all of the attendees.”

At the Team Level

Hospitals also are finding more ways to engage patients and families at the team-based level. In addition to including them in bedside change-of-shift reports or taking them along on multidisciplinary rounding, hospitals are, for instance, enabling families to activate a response when policies or providers are stonewalling them.

At the University of Michigan, patients or families can call for a rapid-response team if they believe something is wrong.

The University of Pittsburgh Medical Center was one of the first organizations to set up rapid-response teams back in 2005, following the death of an 18-month-old girl from dehydration and drug misuse, among other factors at Johns Hopkins Medical Center in Baltimore. Josie’s mother kept insisting to clinicians that something was wrong with her daughter, but the pleas fell on deaf ears.

UPMC also developed a comprehensive, six-step patient- and family-centered care improvement process, which includes shadowing patients throughout their experience with the system [see Six Steps to Ideal Care, Page 16]. Shadowing is performed by volunteers, interns and med students at no added cost and, depending on the clinical area, can start at the very first contact over the phone.

Since it was launched in orthopedic services, the practice has spread “like wildfire,” says Pamela Greenhouse, executive director of UPMC’s Patient and Family Centered Care Innovation Center. It’s now used in 67 different clinical areas, including trauma services and outpatient mental health.

Shadowing has borne fruit at UPMC, upping compliance and dropping readmission rates, Greenhouse says. After previous attempts to fix quality of care issues with cervical spine patients, shadowing helped to reduce clearance time, lengths of stay and hours spent in a neck collar, all while bolstering patient satisfaction.

Do It Again. And Again

Greenhouse emphasizes the need to shadow again at regular intervals once improvements are implemented to keep old habits from resurfacing. “Once we’ve shadowed a care experience and identified opportunities to improve it, we go back and re-shadow periodically so that we’re constantly and consistently identifying new opportunities to improve the care experience,” she says. “The current state is always changing; it’s not static.”

Cincinnati Children’s Hospital Medical Center, meanwhile, uses rounding at the bedside to gather patient and family input and improve care. The hospital has developed a patient and family preference card to assist in the endeavor, allowing parents to say whether they’re willing to take part, and whether rounds should take place in the room or hallway. About 90 percent choose the room, says Mike Vossmeyer, M.D., assistant professor of clinical pediatrics and medical director of community integration.

All told, it took Cincinnati Children’s about three or four years to perfect the art of patient- and family-centered rounding at the bedside. It involved four key steps, Vossmeyer says: starting small and scaling the practice once you know what works, collecting data on the outcomes, making sure family members are involved, and remaining patient because instilling the practice takes time.

One of the next big steps, he says, is to dive deeply into data and determine what impact patient-centered rounding is having on outcomes. A few recent studies at other institutions indicate that the practice boosts communication, exchange of information and the quality of care.

“We got so caught up in the early years of doing it that we never really studied what is working well, what is not, and whether it is actually making a difference in outcomes, or just feels good but doesn’t have any impact,” Vossmeyer says. “As we move down the line, I think we’re going to see a much more rigorous approach to studying the effects and outcomes of family-centered care to try to document what sort of a difference it makes with respect to compliance, outcomes and communication.”

LifePoint Hospitals in Brentwood, Tenn., is involving patients in shift-change meetings at its facilities. Studies have shown that the practice improves communication among the patient, family and care team; saves clinicians’ time; and boosts patient and staff satisfaction.

Engaging patients “is really a partnership. ... [they] do better, have better treatment results, stay healthier and promote wellness when we recognize [health care] as a partnership, rather than the paternalistic way we’ve looked at it historically,” says Karen Frush, M.D., a professor of medicine and chief patient safety officer at Duke University Health System, a joint-venture partner with LifePoint.

Now, Frush says, “When we’re looking at how we are redesigning processes or creating a new unit or designing a new policy, having patients at the table to actually be part of the discussion, rather than getting their sign-off at the end, makes a big difference.” 

Marty Stempniak is a staff writer for Hospitals & Health Networks, Chicago.

Six Steps to Ideal Care

The University of Pittsburgh Medical Center has developed a six-step framework in its Patient and Family Centered Care Innovation Center to lead itself from the current to the ideal experience in various clinical areas across the 20-hospital network.

Current State

1 Define the care experience.

2 Form a guiding council to help lead the process.

3 Evaluate the current state by using shadowing and looking at everything through the eyes of the patient and family, and developing a sense of urgency to drive the change.

4 Develop a patient- and family-centered care experience working group based on the various touch points along the care path.

5 Get inside the patient’s mind and create a shared vision by writing the story of an ideal patient and family care experience.

6 Identify your PFCC improvement projects and form teams to tackle those projects.