A report just published in the Journal of Cancer Education seems to epitomize two of the problems within the world of prostate cancer advocacy: (a) a lack of consensus about what is really important and (b) our own failure to act promptly and decisively when called upon to do so!
Prostate cancer patient advocates have a unique vantage point, given their interactions with patients, researchers, and administrators. However, Kovtun et al. noted that few well-coordinated studies had ever sought to understand these individuals or to seek their opinions on cancer issues.
Kovtun et al. developed a survey and mailed it to 19 advocates associated with the National Cancer Institute’s Prostate Cancer SPORE Program. The results of their survey were as follows:
- Only 10/19 advocates (52.6 percent) responded.
- All were male, most were retired, and all had faced a diagnosis of prostate cancer.
- Two major themes emerged:
- The importance of patient education in promoting informed clinical decision-making and
- A perceived need for patient-centered research by providers and educators.
The authors also note that the 10 patient advocates who did respond had “a broad range of opinions on the spectrum of cancer care.”
After 20+ years of prostate cancer patient advocacy, it is high time that the prostate cancer advocacy world developed a consensus about four or five critical issues that we really need help with. I’m not talking about money for research or better drugs or “a cure” for advanced disease. Those are self-evident. I am talking about less tangible but equally critical things that can optimize the national awareness of the burden of prostate cancer and help us all to do something about it!
Here are just some of those possibilities:
- A Office for Men’s Health within the National Institutes of Health
- A National Center for Prostate Cancer Education and Research (including a small but focused staff of full-time national education coordinators)
- A short list of clinical trials that we absolutely insist gets done because the outcomes are needed (e.g., a trial designed to prove once and for all that early hormone therapy is or isn’t any better than delayed hormone therapy in a highly defined, stratified patient population)
- Real patient representation on prostate cancer panels of organizations like the USPHTF and AHQR so that we speak and are heard — and not just “patted on the back” for turning up.
And then we need to act when we get the opportunity. Some people are going to say we should be happy that 52.6 percent of those who Kovtun et al. surveyed responded. I think that the 47.4 percent who didn’t respond should be saddened by the opportunity missed. (Although I recognize that it is the real world and maybe 2-3 out of the 19 had really good reasons why they weren’t able to reply in a timely manner.)
If you are elected to represent the prostate cancer community on something as important as the NCI’s Prostate Cancer SPORE program, your voice should be heard, loudly, on every possible occasion. And you are not there to represent yourself, or even some organization you belong to. You are there to represent every man who has or is at risk for prostate cancer. So speak up. Collaborate. Let’s develop some priorities and get them enacted.
Filed under: Living with Prostate Cancer
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Bravo. Well said and exactly on point. We need to go beyond getting money for research and get into how effectively the money is spent. I worked with the men involved with the SPORE program and they never seemed to get engaged. Maybe some of the problem has to do with the fact that they do not see the issues you mention above as their role. Rather they see their role as getting more money for research. Makes the authority figures more comfortable if they play that role and they are happy to fill that role.
Had a man who was an adult educator tell me a while back that men are used to working in a hierarchical structure at work and they find it more difficult to buck authority or maybe do not have the skills to do that effectively. They are more likely to make statements or demands than they are to ask pointed questions that highlight problems. They also do tend to focus on their personal issues rather than on the issues of the entire group. More men need to think big picture. Some do that effectively but not enough.
Thanks Kathy.