Connie Hill, MSN, RN, director of a 30-bed unit at Children's Memorial Hospital, Chicago

It was at a 2002 meeting at Children’s Memorial Hospital in Chicago that Connie Hill, MSN, RN, reviewed the chart of a child who had been on a ventilator in her unit for two years. She asked her colleagues why the child had not been discharged. “It wasn’t because she was not medically stable,” Ms. Hill said recently, “but because there was a lack of community resources to support her.”

Inadequate community services existed for a child with special needs in Chicago, the third-largest city in the nation? “I was dumbfounded,” she recalled. “And I said, ‘We need to start a consortium. We need to invite policy-makers, state agencies, community leaders.’ And people just looked at me, like, ‘Okay, Connie. How are we going to get that started?’”

As director of 9 West, the 30-bed Allergy/Pulmonary/Transitional Care Unit, Ms. Hill persisted, and in 2004 the Consortium for Children with Complex Medical Needs was formed. The 75-member coalition of parents, clinicians, advocates, and representatives of government agencies and insurance companies meets quarterly, with the goal of “networking, education, and advocacy” on behalf of the city’s special needs children, some of whom may be on ventilators indefinitely. For example, the group identified poor reimbursement of home health care as a serious obstacle, and the hospital established ties to agencies able to tackle the reimbursement issue. Now, some children can go home to receive care.

Ms. Hill never intended to be a leader. She was working as a staff nurse at the hospital in the mid- 1990s when colleagues encouraged her to apply for a clinical manager position in 9 West. She followed their advice, and in late 2000 when her supervisor failed to return from maternity leave, she proposed a “shared leadership model.” After a year or so during which she and two other nurses shared the directorship, Ms. Hill was asked to become sole director (some staff were uncomfortable with the decentralized authority, despite good clinical outcomes). She did so, with a modest goal: “I wanted to provide a venue for all nurses to have a voice.”

With this goal in mind, Ms. Hill decided in 2008 that 9 West would be a good fit for Transforming Care at the Bedside (TCAB), a national initiative of the Robert Wood Johnson Foundation with the Institute for Healthcare Improvement. Communication between nurses and rotating medical residents was targeted in the hospital’s quest to improve the coordination of care (Quisling, 2009). As Ms. Hill said, “It’s disheartening when you receive a patient survey and a family says, ‘The doctor said this, but then the nurse told me that.’” A procedure was created for staff nurses to provide orientations to residents, who rotate monthly among units, to foster better team communication. Residents are now more likely to confer with 9 West nurses during rounds, Ms. Hill said, increasing satisfaction among nurses, residents, patients and families.

As a doctoral student at the University of Wisconsin-Milwaukee College of Nursing, Ms. Hill is examining an often neglected population: teens born with HIV, a majority of whom are African American and Hispanic. Now that many HIV-positive children survive into adulthood, they mature sexually and face the stigma attached to the infection. Ms. Hill’s study uses PhotoVoice, which involves putting cameras into the hands of HIV-positive teens and asking them for a visual answer to the question, “Where do you see yourself in five years?” “They’re writing their own story” in photographs, she said, a story they can use to raise awareness in others and to remind themselves of their own strengths.

Ms. Hill has quite a story herself. As a mother of a grown son, a pediatric nurse who endured many hospitalizations as a child, a researcher whose study is an outgrowth of her advocacy work, and an African American who strives to enhance access to health care for all, she is a woman of both practical ideas and lofty ideals. So when she saw that a child capable of living at home had been in her unit for two years, her natural response was to assemble a consortium. Today, that child is doing well at home.