Urologists form online prostate cancer network
Johns Hopkins Medicine, the Prostate Cancer Foundation, and Cedars-Sinai Medical Center have launched the National Proactive Surveillance Network, an online resource for men diagnosed with low-grade prostate cancer that can be slow-growing and non-life-threatening in up to 50 percent of diagnosed cases.
The network is structured to actively manage prostate cancer in patients who qualify for proactive surveillance, which entails careful monitoring rather than invasive treatment. It will also provide a national resource for prostate cancer experts to advance their knowledge with the goal of providing better care.
Funded by a $5 million grant from the Prostate Cancer Foundation, the program will use protocols developed by urologists at Johns Hopkins, which has the nation's largest patient population under active surveillance for prostate cancer, with more than 1,000 men enrolled since 1995. The network includes myConnect, an interactive patient portal designed to track the progress of a patient's treatment with interactive charts and graphs, connect patients with network physicians, schedule appointments, and personalize news content to receive proactive surveillance alerts. The service is HIPAA-compliant for patient privacy and security.
"We closely monitor patients who are in proactive surveillance," says H. Ballentine Carter, director of Adult Urology at Johns Hopkins Medicine and a longtime Prostate Cancer Foundation-funded investigator. "It is not a typical treatment method; it involves ongoing monitoring and management instead of surgery, radiation, or other interventions. Proactive surveillance is similar in nature to options known as watchful waiting, expectant management, or active surveillance, and emphasizes a patient's personal preferences. The network will be a resource to men diagnosed with low-grade disease that is often non-life-threatening."
The National Proactive Surveillance Network comes at a pivotal time for the prostate cancer community. "Recent debate over PSA testing has stirred controversy and confusion over screening men for prostate cancer," Carter says. "Every man has the right to know if he has cancer and to make informed decisions with his urologist. This requires thorough dialogue between patients, family members, and urologists, weighing the pros and cons of screening and treatment options. Sometimes the best treatment is deciding that treatment is not needed, perhaps now, or ever," he says.
Patients who join the network will undergo biannual digital rectum exams, urine tests, and PSA tests, as well as a yearly prostate biopsy. They also will answer lifestyle and nutrition questionnaires and record their medical history. In addition to providing an efficient model for proactive surveillance, the network will collect and sort data in a scientific-blinded fashion—with no patient name association—so that researchers can analyze trends and the success of the program. Patient samples, including blood and urine, also will be analyzed and banked with patient consent by Johns Hopkins Medicine on the East Coast and Cedars-Sinai Medical Center on the West Coast. The repository of blood and urine will support future biomarker and genetic studies.
"The network will reduce overtreatment of patients with low-grade disease, ultimately enabling health care services to direct more resources to those patients with aggressive, life-threatening varieties of prostate cancer," says Stuart Holden, director of the Louis Warschaw Prostate Cancer Center at Cedars-Sinai and medical director for the Prostate Cancer Foundation. "This online tool will also generate a nationwide program for medical professionals to provide better tracking and better stratification of patients whose prostate cancer has a higher probability of being slow-growing and non-life-threatening."