Skip to main content

UNC Lineberger’s Smith was awarded a contract by the Patient-Centered Outcomes Research Institute to find the research questions that matter most to bladder cancer patients.

image2
Angela Smith, MD, MS

CHAPEL HILL — To identify important medical questions that haven’t been fully answered by researchers yet, doctor and researcher Angela Smith is turning to patients for guidance.

Smith, MD, MS, assistant professor of urology at the University of North Carolina School of Medicine and member of the UNC Lineberger Comprehensive Cancer Center, is working on a project that will uncover top questions that patients have about bladder cancer.

“While medical researchers might intend to positively impact patients through their research, the questions they’re asking may not be the ones most important to patients,” Smith said. “We want to get a better idea of the research questions that matter most to patients.”

Toward that end, Smith has been awarded a $121,237 contract by the Patient-Centered Outcomes Research Institute (PCORI). The Eugene Washington PCORI Engagement Award will support a two-year effort to survey willing patients from a more than 4,000-person online community. The online community, which involves patients, caregivers, and others, is part of the Bladder Cancer Advocacy Network, a national advocacy group that supports bladder cancer research and patients.

Smith said she chose to focus on bladder cancer because more active research is needed. It’s the sixth most common type of cancer in the United States, and has a five-year survival rate of 77 percent. Invasive bladder cancer can mean a life-changing surgery to remove a patient’s bladder.

By working through the Bladder Cancer Advocacy Network online community, Smith will poll a representative sample of the U.S. bladder cancer population to find out what the most important questions are. She thinks the project is a good way to go about identifying questions, rather than relying on doctors in the clinic.

From time to time in her own practice, patients have asked questions that have no evidence-based answers, and current research is not addressing many of them. They’ve ranged anywhere from “why does my sense of taste change after surgery?” to more complex questions about treatments.

“We can’t rely solely on clinicians to ask patients which research questions matter – they are focused on explaining the disease, diagnostic options and treatment options,” she said. “And patients are not necessarily in the right mindset to discuss research questions at the time of diagnosis and in the midst of treatment. I think sometimes the best time is after patients have been diagnosed, after they’ve been treated, at which point they can think to themselves, ‘I wish I had more evidence here to guide my decision.’ ”

To pick the top questions, Smith said she plans to have a group prioritize questions. This group will include patients, caregivers, nurses, doctors, researchers, payers, and policy-makers, so that all viewpoints will be represented. They then plan to send the list of prioritized questions to funding organizations and researchers to help guide their work. They also plan to set up the infrastructure to be able to systematically poll patients in the future.

Smith has already been involved in trying to identify research that matters to patients as a member of a Patient-Centered Outcomes Research Institute advisory panel. She said the work opened her eyes to the fact that researchers can sometimes have “blinders on” in terms of what they think is important.

And through her work on this project as well as in her medical practice, Smith has a desire to uplift people. She said that has been with her since she was a child. In her grandmother’s salon as a young girl, she worked odd jobs sweeping up and taking out customers’ curlers. She enjoyed developing relationships with customers, and seeing how their experience in the salon could transform them.

“When they left the salon, they were always happy due to the attention given not only their styling but any burden they brought for discussion – and that’s a quality of life experience,” Smith said. “That’s not medicine of course, but there’s no reason you can’t apply the same principles to it. Your job as a physician, as a surgeon, is to explain the diagnostic and treatment options for your patients, but to be attentive to any question – no matter how seemingly minor – and to set them back out into the world confidently, their stresses perhaps not fully resolved, but at least manageable.”

Her project is part of a portfolio of projects approved for PCORI funding to help patients and other health care stakeholders become actively involved in health research, according to a PCORI news release. In total, PCORI has awarded more than $3 million to support 18 projects to-date through this award program so far.

PCORI is an independent nonprofit authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and health care decisions.