Editor’s Note: This is one of a series of profiles of the Wisconsin Idea in action. See past profiles we have published.

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After a normal day at work in September 2002, Pete Daly came home to a dark, empty house and a ringing phone.

The voice on the other end of the line was his dermatologist calling to tell the electrical engineering consultant that he had melanoma, the most serious type of skin cancer. It was Daly’s 49th birthday. Daly spent the next month feeling overwhelmed by the medical system, the insurance company and his disease. “My whole world spun, all my senses changed, everything developed different characteristics,” Daly says. “[I was] overwhelmed by… the push to follow along an already worn path of treatment even though it didn’t seem the right direction for me.”

Then, following his sister’s advice, Daly decided to look to the Center for Patient Partnerships, an interdisciplinary center of the schools of Law, Medicine and Public Health, and Nursing, which specializes in guiding cancer and other seriously ill patients through their disease experience.

Tirelessly advocating for medical support and patient rights, Meg Gaines, director of the Center for Patient Partnerships, works from her office in the Law School and talks by phone with a client. The Center for Patient Partnerships is an interdisciplinary center of the schools of Law, Medicine and Public Health and Nursing that specializes in guiding cancer and other seriously ill patients through their disease experience.

Photo: Jeff Miller

Soon after, Daly and his three sisters met with center director Meg Gaines at Madison’s University Club for lunch. Daly says it was a lunch that would turn around his cancer journey.

“Meg said to act ‘as if your life depends upon it, because it does,’” Daly says. “Meg Gaines was able to turn me around with one conversation from a very passive patient to an active patient ready to make my own path through the disease and its treatment.”

Since 2001, Gaines and the center have given Daly and more than 900 patients from all across the state hope through what the center calls “patient advocacy,” or the support of patients in their medical, financial and emotional journey through disease.

Because each patient is different, the center addresses each patient’s individual needs. Some patients need help understanding their disease, others want to learn about new options, and still others need help communicating with their doctors during visits.

“Our goal is not to do for people but to build capacity in people to do for themselves,” Gaines explains. “Much like teaching somebody to ride a bike — if we need to have them on the back for a little bit, we can do that; if they need us to run alongside of them holding the seat, we can do that; if they just need us to stand in the middle of the field and encourage them, then we can do that.”

Gaines, a Law School graduate and current professor, began her advocacy work after her own struggle with ovarian cancer in 1994. Gaines says her diagnosis made her feel “scared like a deer in headlights.” She attributes her survival to the hope and support of family and friends.

After returning to work, Gaines decided she wanted to share this hope with others who didn’t have the support she experienced. Her first opportunity came in 1996 when Gaines’ oncologist asked her to talk to an ovarian cancer patient who had lost hope.

“I began the greatest gig in the world just by going to someone’s hospital room and personifying hope,” Gaines says. “All I have to do is walk in with hair on my head and color in my face, and patients struggling to find hope can see the possibilities.” In the spirit of the Wisconsin Idea, the center uses the resources of the university to spread hope and give guidance to patients all over the state. The center combines the knowledge of the health care, legal and social work staff and students with the determination of patients to create what Gaines calls a “synergy” that can change the health care world in Wisconsin.

Brochures detailing services for medical support and patient rights fill a display rack at the Center for Patient Partnerships. Brochures detailing services for medical support and patient rights fill a display rack at the Center for Patient Partners.

Photo: Jeff Miller

Lynn Van Ummersen, an oncologist at the UW Hospital and Clinics, saw the support the center gives first hand when Gaines accompanied one of her patients to a doctor visit. Van Ummersen says the “extra set of ears” can help a patient gain perspective and control of their experience.

“A lot of patients and their families are shell-shocked just by the words you’re mentioning: cancer, chemotherapy. They stop listening right there whether we keep talking or not,” Van Ummersen says. “It’s a lot of information that can be overwhelming. Someone who has a background in navigating the system can be really helpful. Meg is unique because she has the tools to navigate the system both legally and medically.” The center also guides patients through the financial and employment issues of their illness, often by negotiating with insurance companies.

In one case, the center worked with a 9-year-old from Milwaukee whose family was covered by Medicaid. The girl’s doctors had diagnosed her with a type of bone cancer that is difficult to diagnose in children. After months of meetings, the girl finally got a referral to a specialist at Mayo Clinic, who determined she did not have cancer. While helping to change the experience of hundreds of patients, the center is also changing the educational experience of hundreds of students, including future doctors, lawyers, pharmacists and social workers. Every year, about 30 students from different disciplines volunteer as patient advocates, in-taking patients, learning about different diseases and treatments, and establishing relationships with patients. Students can also take classes taught by Gaines to learn in more detail about the health system.

Gaines believes the connections students make with patients today is something they will keep with them in their future careers. “All of our technical knowledge won’t amount to much if we lack the skills to build relationships based on mutual respect. In health care, those kinds of relationships can save lives,” Gaines says. “When students write to you years later saying the lessons they learned from patients at the center inform their work every day, you know you’re up to something powerful.” On a broader scale, Gaines says the educational exchange between patients and students can be spread to the entire state and better the health care system through the Wisconsin Idea.

“The Wisconsin Idea often gets described as taking the brilliance and resources of the university out into the community… But the thing I really treasure about what we get to do is the second aspect of the Wisconsin Idea; the exchange, to bring the wisdom and brilliance of the community into the university,” Gaines says. “We bring such gifts to them and they bring such gifts to us and the result of that makes positive change for the state and the nation. The result is things go different in the right way.”