In 2013, PCORI awarded Penson funding for a three-year follow-up. “We will specifically compare the effectiveness of contemporary surgical and radiation techniques for localized prostate cancer in terms of the 6-, 12-, and 36-month patient-reported outcomes and quality of life, side effects, cancer control, and treatment complications,” says Penson.

“We will also identify subgroups of patients who respond better to certain treatments than others, and we will explore how the effectiveness of therapy is influenced by the quality of care delivered, in hopes of aiding patients in their choice not only of the treatment to receive but also of the facility and provider.”

"This is more than an extension," Penson says. "It's allowing us to recraft CEASAR in a way that better incorporates the patient perspective. We're making patients part of the research team, partners from start to finish.

”Maybe they won't know about statistics and study design, but I sure don't know about the experience of having prostate cancer. I can guess—and it’s an educated guess—because I see these guys all the time in my clinical practice. But if you want information patients can use, you need to have patients working with you. "

The current project’s 10-patient team meets with researchers monthly to define and discuss matters that make a real difference to men. “I told the team: ‘I’m not looking for a rubber stamp,’” Penson says. “’I want you to tell me what we’re doing right or wrong. I’ll do what you guys tell me to, as long as I can justify it scientifically.’”

He reports, “We’ve made wholesale changes to the survey in ways I’d never have thought. In nitty-gritty areas of sexuality, patients gave us insights that you’d only have if you’d lived through it.”

There were also “Aha!” moments related to incontinence, a common problem after prostate cancer treatment. Although, surveys of side effects generally ask about this aspect, they miss some of the intricacies. One patient partner noted that some men adapt their behaviors and therefore might report that they were not experiencing incontinence. For example, this patient leaked urine when he was active, so he’s become more sedentary. “You wouldn’t know about that as a researcher unless you got it from the patient,” Penson says.