Talking with one of YOUR prostate cancer research advocates


Next week, on Monday, September 14, at 5 p.m. Eastern (2 p.m. Pacific) there will be a live teleconference — coordinated by CureTalks — with Tony Crispino, the patient representative to the genitourinary cancers section of the Southwest Oncology Group (SWOG).  For additional information about this teleconference, please click here.

Over the past 15 to 20 years, patient representatives have gradually played an increasingly important role in bringing the patient perspective to the workings and decisions of all sorts of research-related groups — from research-related initiatives like the Prostate Cancer Research Program of the Congressionally Directed Medical Research Programs of the Department of Defense to clinical trials groups like SWOG and the advisory groups coordinated by the regulatory agencies like the U.S. Food and Drug Administration (the FDA). It is important and helpful for patients to understand that there are other patients, like Tony Crispino, who represent you, the patients with prostate cancer, within such organizations, and how they go about doing this.

We expect this to be a wide-ranging discussion about the role of the patient advocate in an organization like SWOG: what is expected of him; what he brings to the table; what he seeks to accomplish on your behalf; and the limitations on what he can reasonably expect to encourage SWOG to do for the prostate cancer patient community. (There are, for example, clinical trials that many patients, researchers, and clinicians would all like to see carried out that — almost certainly — just aren’t going to happen.)

4 Responses

  1. Patient advocates are a great idea. Everyone should listen in. Also, I am currently gathering data related to prostate cancer reporting. If you would like to provide data based on your own experience, please follow or cut and paste the link:

    https://prostatereport.wordpress.com/2015/08/28/prostatereport-an-interpretive-prostate-pathology-reports/

    Thanks

  2. Please record and save this teleconference with Tony. Our local prostate cancer meeting begins too near the time of the teleconference to be able to participate – and we already have a physician scheduled to make a presentation at that meeting – so unable to have considered having our support group listen in to the actual teleconference. The recorded event may become valuable to support group leaders to replay to their members.

    Charles (Chuck) Maack
    Prostate Cancer Support Wichita (Kansas(
    A chapter of the Us TOO Intl.,Inc., Network
    http://www.ustoowichita.org
    http://www.theprostateadvocate.com

  3. Chuck:

    All the CureTalk programs are recorded and made available after the event on the CureTalk web site. The one with Tony will probably be available later in the week of September 14.

    Mike

  4. I really enjoyed this discussion. TY for having me on the program and thank you PCai for all you do.

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