Advocate for hire.

I had an idea for any of our really savvy PCa members. And I don't mean to be coarse.
Be a freelance advocate for those who just don't have the knowledge, personalities to deal with the medical system. I mean lawyers are basically advocates who get paid. You could be helpful and be paid a reasonable fee. Thimk about it . I am totally serious.

For who the doctor or the advocate. you raise a good point though. It would be a new field and certain qualifications. I really don't know how that would be accomplished. tho other professions must have started unregulated and morphed into regulation Physicians assistants, legal whatchamacallts. I can;t think of everything. But could it be a need to be filled, especially in the way the medical system seems to be going. The pioneer, would definitely have some legwork. Or maybe I violated my own rule to think things thru.
To be honest, I think it is viable. the world is changing quickly. Ok I will return to my cubicle. My apology to any cubicle workers. The cubicle concept was well intentioned, but is being phased out in a lot of companies, to a more interactive freeing environment.

Dr Barkin has been a prostate cancer coach for years. Dr Strum is associated with an organization that does advanced diagnostics and treatment recommendations. The idea is not new, but also seems not to have caught on with the vast majority of patients.

I like the idea. The medical world is certainly a confusing world. I think just going through the insurance hoops when you have a disease like this is overwhelming at times...I get upset when I think of much older people dealing with these same challenges.

What bugs me is that most guys dealing with PC have multiple doctors, but yet never do they ever talk to each other. A patient advocate for PC could be that common project manager on the case.

Logo,
Interesting topic. I thought about this many times in the past. I know of a group of well learned patient advocates that do charge for information but I am not one of them.

The problems are no different for a newly diagnosed patient talking to a PA versus talking with their physician. Biases exist in all of us diagnosed with prostate cancer and the ability to put our own anecdotal cases aside is not an easy ability. Providing information to others without the proverbial "this is the best doctor", "here's how I did it", or "I would never do it that way" are very challenging aspects of "coaching".

And remember, once you start charging for coaching services, you are now providing medical advice for profit. There are a lot issues with that idea. As they say bad information can be very expensive. And biased information can very negatively harm a patient trying to find for themselves what is the best approach for them. Thus I like boards such as this one that offer multiple ideas from a peer group versus an individual biased advocate who developed his opinion over years of experience and is unchanging.

I use in the support group I run a both/and approach rather than an either/or approach because describing the positives is great but providing descriptions of both sides of a coin objectively is challenging. I found it very difficult when I was first diagnosed, and still find it challenging from time to time.

I see a bunch of really smart guys online. There has been a huge shift in patient knowledge with the internet that has changed the way men get information. This site served me very well as an educational tool, perhaps my number one source, that allowed me to set aside my biases in my case history and be more objective to a myriad of approaches a patient has today. I still recommend to all the newly diagnosed I meet to seek P2P forums if they are online savvy, and I name this one, so that they can digest far more than I could ever tell them. And if they are not online savvy, I recommend that they at least learn to follow along the discussions as no handout that I ever had can describe the diversity of a live online working group. Sure there are squabbles, dust ups, and many negative online postings, but there are also real people behind these keyboards that as a collective are in my opinion far better than any one experienced individual can deliver paid or not paid.

After serving as a moderator and patient advocate here for several years I found that my weakest links are always my own biases. And for that reason I would never charge to coach anyone. And the coaching I do provide I try to be careful to express both sides of an option.

One of the most common questions I get asked after a speaking engagement or talking to a newly diagnosed man is "how do I find a good doctor?". My reply is unchanged over the years.

1> Get educated. Educated decisions are the best decisions. Being educated will help you find the doctor that is best for you.

2> Find a peer group either live or online. They will help you identify the various approaches a doctor takes to their care for prostate cancer.

3> Understand that what you learn early on will likely change over the years either marginally or extensively. Not all light bulbs are turned on at the same time and not all light bulbs glow with the same brightness. The same is true in the patient community and in the physician community. I found many physicians tell me they would never do something five years ago that I find them doing today. It's an understanding that I have acquired that simply proves to me that the care and treatment of a prostate cancer patient is a constantly changing process. New evidence is always being presented and new approaches to given cases are always morphing.

I know a lot of great patient advocates. Some that have "morphed", and some that haven't over many years. Because there is really no training course for being a paid advocate I would not recommend paying for what I think is available without charge. And because of the liabilities, I would venture to say that any patient advocate that charges for what they know is taking risks no matter how lawyered up the release documents are.

I have had the very rare privileges of serving on medical panels designing clinical trials, being elected into the society at ASCO, lobbying PCa affairs in DC on capital hill, serving as a government advisor of prostate cancer grants, attending key annual summits of awareness and education, and more recently having the privilege of working with a key panel on treatment guidelines and the best way I can say it is this...

I do not consider myself qualified to be a paid advocate coach for profit and I am not interested in that concept. I very willing to share what I see and learn. But even still I am not a medical professional. But the moment I take money for what I know that changes. Licensed or not.

Peace to all.

Post Edited (Tony Crispino) : 4/3/2014 10:43:32 AM (GMT-6)