Beyond the Card: A Patient’s Voice

Beyond the Card: A Patient’s Voice

After his doctor said the word “cancer,” Bill Crooks didn’t hear much else as he tried to absorb the devastating news.

“Hearing the diagnosis … it feels like life is over,” the Grand Rapids Township man said.

Diagnosed with prostate cancer in 1993, he opted for surgery to “get it out of my body.” The operation was successful and Crooks, who is now 83, has been cancer free for more than 20 years. Still, the surgery’s side effects of erectile dysfunction and incontinence haven’t been easy.

But what if men like Crooks, who was diagnosed with a lower-risk form of prostate cancer, never had to be treated surgically?

Advancements in prostate cancer treatment have made it possible for some men to opt for active surveillance of the cancer, which allows them to avoid negative consequences that can dramatically decrease quality of life.

“Looking back, I wish what’s available now was available to me then,” he said.

Bill Crooks, 83, with his three grandchildren.

Bill Crooks, 83, with three of his great-grandchildren.

Finding better ways to treat and manage prostate cancer is the mission of the Michigan Urological Surgery Improvement Collaborative, or MUSIC. This physician-led quality improvement program is funded by Blue Cross Blue Shield of Michigan, and is comprised of 42 medical practices and 235 urologists, which accounts for approximately 85 percent of the urologists in the state.

The University of Michigan Health System is the coordinating center for MUSIC and is led by Dr. David Miller, Dr. James Montie, Dr. Khurshid Ghani and Project Manager Susan Linsell.

Miller said the collaborative effort unleashed a culture of data sharing and implementation of best practices among participating physicians. With prostate cancer being one of the most common cancers diagnosed in men, he said variability in treatment was striking when the group first started collecting data in 2012.

By collecting and analyzing data, sharing best practices and implementing changes, MUSIC is enhancing the quality, value and outcomes of treatment provided to men in Michigan with prostate cancer.

“There is a deep interest in continuous improvement and finding ways to improve care for their patients,” Miller said of the participating physicians.

Since the collaborative formed, MUSIC has achieved a number of successes including:

  • A statewide decrease in the use of both bone scans and CT scans for men with low-risk prostate cancer.
  • A 50 percent reduction in prostate biopsy-related hospitalizations.
  • New strategies to decrease erectile dysfunction and incontinence, the two main side effects of the surgery.

The program’s results are generating national interest, with organizations in many states actively reaching out to MUSIC leadership to inquire about how to set up similar collaborative efforts.

Miller and his peers hope the efforts of the collaborative lead to further improved treatment protocols and outcomes for patients.

To ensure their voice is heard, MUSIC boasts four prostate cancer patients, as well as the wife of a patient, as active participants in the consortium. Crooks, the cancer survivor, is a member of the group.

Crooks said having a voice within MUSIC has allowed him to impart a deeper understanding to the physicians involved about what it’s like to be a cancer patient. He wants the doctors involved in other men’s care to know there are real people who trust in the decisions made by the medical professionals caring for them.

“I’ve spent 20 years being a mentor to men who have been diagnosed and are in the process of making a decision or living with the decisions that they have made and the treatments they have had,” Crooks said. “This gave me another venue to speak directly to the physicians and I think it is amazing how they value those of us who are patient advocates. They truly value what we have to say.”

Crooks viewed his role as helping to validate what physicians likely already know or suspect about the patient and family experience, rather than helping to guide any clinical decisions.

“I think it’s putting in front of the physicians that we rely heavily on them and their learned decisions,” he said. “I think treating those close to us with compassion and respect is also very important.”

For Miller, having patients in the group keeps their needs front and center.

“They really serve as sort of an essential moral compass for the work we’re doing in the consortium,” he said.

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