“Please include more patients at our medical meetings”

Apparently Howard Wolinsky’s participation as a patient in the active surveillance panel at the Genitourinary Cancer Symposium last month “hit a nerve” with at least one of the medical oncologists in the audience.

You can read what Dr. Prateek Mendiratta thought about it if you just click here to see his article on the Kevin, MD web site.

We are delighted that PCPC3 was able to help to facilitate this opportunity — for Howard Wolinsky and for Dr. Mendiratta.

4 Responses

  1. Thanks for sharing this information.

    At least in my experience, true patient/doctor collaborations are rare in prostate cancer community — where a paternalistic “doctor knows best” attitude all too frequently prevails, again, as least in terms of my experiences.

    The conference PCai held in Florida earlier this month was a refreshing exception to this generalization. Great mix of clinicians, researchers, patients, advocates, and providers.

  2. Yesterday was my second anniversary. 72 years old. Diagnosed 3/13/15. Gleason 4 + 3, 1 of 8 cores. Prostavysion showed no aggressive genes.
    PSA 4.3 to 4.8. Two 3-T MRIs show no growth, no perineural invasion.

    Will continue AS, I am sure, for a long time, or until MRI shows advancing.

  3. Nice article. Very well articulated. I complemented the author and was critical of the commenter that was critical of anecdotal patient input.

    While I agree that when patients are included on some panels they do tend to give anecdotal input. But in the case of the GU panel Dr. Mendiratta it was appropriate input. In the panels I serve on at ASCO, SWOG, or AUA, I check my prostate cancer case at the doors. SWOG had 7 patient advocates when I joined in 2012 but they have 23 now serving on 23 organ site committees. Same throughout the NCTN. The patient input is valuable when the patient understands the topic and can give strong input. I have been treated as a colleague in the panels I serve on and not a token inclusion. Two thumbs up to the author. And great job to Howard Wolinsky as well.

  4. Thanks for posting this report and link that hopefully will encourage more patients to participate. Like Tony, and the doctor and patient in the story, I have learned over the years that patients often have valuable experience, perspectives, key knowledge and insights to contribute to such panels and decision making groups, like the FDA’s Oncologic Drug Advisory Committee (ODAC) and similar groups. I’ve provided details below for anyone who wants a more complete account.

    Growing awareness of our role and value as patients.

    My initial concept: That awareness took several years to develop after my diagnosis of a challenging case in late 1999. At that time my concept of doctors was that they were rather god-like versions of the TV doctor Marcus Welby, including computer-like minds that gobbled up, intelligently digested, and remembered all relevant medical knowledge, with adequate time spent with the patient, enabling them to deliver care in an unbiased fashion with the patient’s best interest always paramount. Gradually I realized that doctors were quite human, like the rest of us, and that even those many dedicated and gifted physicians and medical researchers typically had significant gaps in their knowledge and medical strategies and tactics.

    Growing awareness: It took me a few more years to realize that I, as an empowered patient with an educational and career background remarkably well suited to interpreting medical research, combined with a case that motivated me and focused my attention, often had a better grasp of key issues, facts and perspectives than doctors and medical professionals who served on panels! For instance, for 3 years I served on research review panels for the Prostate Cancer Research Program (PCRP), which is under the Congressionally Directed Medical Research Program (CDMRP). While for the first 2 years I spent about a day in advance analyzing each assigned proposal for review and electronic shared comment (usually about 8, also tackling unassigned proposals), I would steer clear of the scientific merits criterion, leaving that to the two professional reviewers whom I assumed were much better qualified. By the third year I had realized that I was often equally or better qualified, based on a lot of courses in math, especially statistics, and design of scientific experiments plus relevant career experience. (The basic advance review work for a consumer reviewer for the CDMRP probably takes about an hour or less per proposal, but we are welcome to provide input on any of the review criteria.)

    Opportunities: I also observed that my fellow-“consumer reviewer” (a.k.a. patient, survivor) colleagues who had more conventional backgrounds often offered many valuable insights and observations — there’s no requirement to have a background in science and research, or any educational requirement. I’m sure Tony would agree that more of us should apply for opportunities to review research (CDMRP, NIH) and participate on panels. Another opportunity is the “ScientistSurvivor Program” of the American Association for Cancer Research, which I have done for 3 years, essentially involving participation in the AACR’s annual meeting in April, at sites around the country, for several days, and sharing what we learn. We survivors in the SSP are treated like royalty. Like other opportunities, typically all expenses are paid. The PCRP offers a small stipend in addition (one of the lowest paid but most fulfilling set of assignments I’ve ever had). There is one other opportunity that deserves special emphasis, and one absence of an opportunity that I am convinced is doing real harm, and a third venue that I hope will change its ways.

    FDA Advisory Panel Participation and Public Statements: Before making drug, device, etc. decisions, the US Food and Drug Administration (FDA) often holds public hearings by advisory panels of doctors, researchers, and at least one patient advocate. I’ve been impressed by the voting-member patient advocates who served at hearings that I have attended, and I am convinced they are respected by their fellow panel members. The FDA advisory committee hearings also feature a public statements section where interested members of the public can make a 5- or 10-minute oral statement (or you can just attend as part of the audience). These opportunities are not common, but there are often one or two a year. My own record and participation includes: 2004 workshop on prostate cancer research trial endpoints (audience question); 2005 hearing on imaging agent Combidex (audience); 2005 hearing on Zometa (audience); 2005 hearing on Xinlay (public statement); 2007 hearing on Provenge (public statement, along with many other patients/advocates); 2007 hearing on satraplatin (public statement); 2010 hearing on finasteride and dutasteride (webcast audience); and 2014 hearing on HIFU (public statement). Usually there is also an opportunity for written comments prior to the hearings. The most vivid and exciting hearing was the one on Provenge, where I am convinced the statements by a number of patients/advocates, led by advocate Jan Manarite and by Dr. Mark Moyad, MD, swung the advisory committee vote to approval (though the FDA later decided to override the advisory committee’s recommendation and instead call for more trial evidence before approving Provenge). Usually there is at least one patient that is essentially sponsored by the company seeking approval, but statements equally or more interesting and pointed often come from others of us who are there on our own. Statements are documented by a court reporter and later appear in the official transcript, which is available online.

    A Group that Sorely Needs a Voting Patient Advocate: the US Preventive Services Task Force: At present this group has no patient advocate. In fact, until very recently, it had no urologist or oncologist who treated prostate cancer in its group. (He or she still lacks a vote, right?) I’m sure many of us would dearly like to see at least one empowered prostate cancer patient voting member of this woefully benighted group. Maybe such a member could prevent another ill-informed, ill-considered blunder. (I am fully prepared to support that assessment of their work to date regarding prostate cancer screening.)

    Another Group that Could Use a Patient Advocate or Two: Congressional committees that conduct hearings about prostate cancer. I have attended at least one hearing, and there was no patient advocate on the panels of those testifying. Bluntly, if I had been on the panel, I would have politely torn up some of the points made by Dr. Otis Brawley, MD (an impressive physician overall, generally well informed about prostate cancer as a treating doctor, and Medical Director of the American Cancer Society). His testimony about the PLCO and ERSPC trial was way off the mark; this was an “emperor’s clothes” situation, and someone should have pointed that out! (Politely.)

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