We all know about patient support forums. I am sure most of us check one forum or another about a condition we or a loved one have. Only recently did I have an occasion to see how powerful patient to patient sites are in influencing treatment and thought about how important it is to integrate DTC strategies with these groups.
My story involves the male nemesis called the prostate. At my advancing age I get tested annually for PSA levels which have been rising the last few years to a borderline level. My internist was reassuring but suggested that I can see a urologist if I felt concerned. I like to be a well versed patient so the research began which led me to read everything on high PSA levels. I found much information on how so many men get unnecessary treatment which starts with high PSA levels to needle biopsy to removal of the gland. Many of those men have lifelong urinary incontinence and erectile dysfunction from treatment for something that would never have killed them had it been left alone.
I also found new methods to further evaluate high PSA levels without a biopsy. The patient forum approach led me to find these alternatives and the leading edge providers. I discovered that urologists do what they know best and that is recommend an often painful biopsy which is a random sampling of tissue. Armed with alternatives such as a Multiparameter MRI I visited the said urologist. After checking my urine stream with an ultrasound which was fine and had nothing to do with my complaint, he recommended a biopsy. Now this was before he even examined me. No way I replied would I do a blind biopsy without an MRI first. He said those are inaccurate but my research and forum buddies led me to the latest findings which showed they are much more accurate than a blind biopsy.
So I finally cajoled the MRI script from the urologist. I then used these patient forums to find an expert who specializes in reading prostate MRI images. I found one a few hours drive and went. I also saw that insurance would not cover it so I shopped around. The self pay quotes varied from $695 to $2500. Sometimes you get what you pay for but it turned out the lower price provider was the best.
My result was that there was nothing to biopsy and my PSA was rising along with the size of the gland. Long story but the lesson learned is patients talking to patients saved me 12 needle shots to my little walnut sized prostate gland and potential infection. By the way those biopsies miss 30% of actual cancers because they sample only 1% of the tissue. The MRI catches 93% of any significant cancer. Since the percent of men who have microscopic cancer in the prostate is equal to their age, you do not want to find those tiny indolent cancers that will never do you harm.
Doctors probably hate patients like me who read medical journals and discuss options with other patients. Too bad. This is the future of medicine particularly as we self fund our treatments more and more. The idea that doctors and patients have a strong bond of trust is declining. I trust my primary care doctor but have a lot less faith in the specialists who do what they know how to do.
How should drug companies interact with patients on these sites? Given regulatory issues it may be difficult to actively participate. Certainly by monitoring them, however, you learn so much about patient concerns, and how they talk about their issues. At least it gives you a good feel how to develop the right approach to discuss your drug with them. I know providers actively engage and respond to misconceptions about treatments and side effects. So doctors and patients do interact on these sites.
In my case I have become a fan of the patient to patient sites and now help others in my same position. Doctor, get ready for the super patient who takes charge of their care because that is your future.