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Valued Partners

Date: May 31, 2013

Richard Dean and oncology nurse Amy Brown recently paid a visit to the new urgent care center on Weinberg 2. Brown, who cared for Dean’s wife, encouraged him to pursue his idea to create a center that would reduce long waits for cancer patients in need of
Richard Dean and oncology nurse Amy Brown recently paid a visit to the new urgent care center on Weinberg 2. Brown, who cared for Dean’s wife, encouraged him to pursue his idea to create a center that would reduce long waits for cancer patients in need of emergency treatment.

Richard Dean had come to expect long waits as both his wife and daughter received treatments for ovarian cancer at The Johns Hopkins Hospital. But his breaking point came after his wife, weakened from five cycles of chemo, was struggling with fluid buildup. Her setback required three consecutive visits to the emergency department, the only place outside of scheduled appointments where she could be treated for complications. 

Dean, a professor of engineering at Morgan State University, had a better idea. What if there was an urgent care center focused on treating the expected but debilitating side effects that can recur in cancer patients? Such a center would also help patients avoid competing with other patients in the ED and protect them from exposure to contagions.

Although there was a time when Dean might have struggled to get a hearing for his concept, those days are gone, thanks to the Johns Hopkins Hospital Patient and Family Advisory Council. Launched in 2011, the council brings current and former patients and family members together with hospital staff to improve communication, address specific concerns and needs, and generate new ideas for improving patient care. In all, the 50/50 mix of patient/family and staff representatives numbers about 24.

Dean, a charter member of the council, shared his idea about creating the oncology urgent care center. Serendipitously, Sharon Krumm, administrator and director of nursing for the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, had envisioned just such a service. With the council’s encouragement, Dean then got right to work. He met with Krumm and pushed the idea forward, drawing from his expertise to help analyze the data and develop a plan.  

“There’s growing recognition that the PFAC members play a significant role in shaping the patient experience and are critical to meeting the JHM strategic priority of being patient- and family-centered,” says Jane Hill, the hospital’s patient relations director. 

 Charlene Rothkopf, who co-chairs the PFAC with Hill, says the group was created “to bring together our different perspectives to achieve our common goal—safe, quality care that all of our friends, family members and neighbors expect and deserve.”

 Several PFAC members also sit on the Quality Improvement Committee and participate on other initiatives, such as the Johns Hopkins Community Health Partnership Steering Committee and the Professionalism in Practice Committee.  

Steady Gains

Already, results are tangible. Over the past couple of years, these meetings have resulted in more flexible visiting hours, educational training for residents on communicating with patients and families, and encouraging family participation in morning rounds. 

And, thanks to Dean’s efforts, the Urgent Care Center for Oncology Patients debuted in June 2012. Located next to the outpatient infusion area, the center is open five days a week, from 8 a.m. to 5 p.m. An oncology nurse practitioner and a registered nurse staff the center, addressing complications cancer patients experience, like extreme nausea or dehydration. 

“Words cannot express my joy at seeing this become reality,” says Dean, who won the James Conway Patient and Family Advisor Scholarship in 2012 from the Institute for Healthcare Improvement for his innovative idea. 

Dean isn’t the only one who’s pleased, says Krumm. In the past, when infusion center nurses tried to care for both their scheduled patients and those who called in with urgent needs, the entire schedule got slowed down. “The new center not only solves that problem,” says Krumm, “but also helps prevent costly hospital admissions, because 90 percent of patients at the urgent care center are treated and sent home.”

Patient-Staff Communication: A Win-Win

At Johns Hopkins, the Children’s Center was the first to formally recognize the important perspective that patients and family members contribute. “It’s been a mutually beneficial partnership,” says patient adviser Pamela Griffin. “What started out in 2007 as an eight-member steering committee has morphed into a council of 50-plus parent and staff members with a string of successes.” Among them are family-centered rounds and the creation of a full-time parent adviser position in Pediatrics, which has given parents a voice at the highest levels in the Children’s Center and greater influence on issues ranging from patient safety and infection control to hospital amenities and navigating the buildings. 

 Now, efforts to bolster patient and family involvement have taken root at every Johns Hopkins Medicine hospital. Most of the councils invite staff from every department to get involved and encourage diverse patient representation as well. 

The council at Johns Hopkins Bayview Medical Center, for example, which hopes to get under way in the winter of 2013-2014, will draw from preexisting community partnerships and patient focus groups. Enthusiasm is running high, says Hopkins Bayview administrator Lisa Filbert. The majority (68 percent) of the 100-plus patients interviewed said they’d be willing to come back to talk about their experiences and how they can help others. 

At Howard County General Hospital, emphasis has been on outpatient care. Launched in November 2010, the hospital’s patient council has dynamic participation, says Lara Klick, director of service excellence. Members actually walked through the building to make recommendations. One recent accomplishment was to correct architectural barriers. “Some people couldn’t use the restrooms in the new pavilion because the doors were too heavy for them to open,” Klick explains.  

Noise is yet another pet peeve. At Suburban Hospital, members of the patient council, now 3 years old, helped rework the visitation policy to respond to concerns that teenage visitors were too boisterous. Now the policy distinguishes between visitors and family and sets time limits to ensure quiet.

Johns Hopkins Medicine’s newest member, All Children’s Hospital in St. Petersburg, Fla., has involved families in patient care for more than five years. Their Family Advisory Council includes teenage patients as well as parents. When the committee decided to craft a more family-friendly hospital handbook, the teens were eager to help.

Although Sibley Memorial Hospital’s family council is in its infancy, Marianne Monek, director of volunteers and guest relations and patient advocate, sums up everyone’s overarching goal: “We’re all trying to envision the ideal patient experience.”  

—Judy F. Minkove with Patrick Gilbert




1. The hospital’s responsiveness to patients’ issues and complaints 

2. How well staff members address patients’ emotional needs 

3. The degree to which staff members include patients in treatment decisions