I'm training relatively conscientiously for a charity bike ride in a couple weeks. I'm riding 25 miles in the Jim Calhoun Cancer Challenge Ride, for the benefit of the cancer center at the University of Connecticut Health Center (Calhoun, the retired coach of the UConn men's basketball team, is one of the biggest “names” in the state, along with women's coach Geno Auriemma). It's not cheap, as 25-mile rides go — $20 registration and $200 “fundraising” minimum. But my wife's employer, which kicks in $100 on top of my ante, is a sponsor of the ride. I did it a couple years before I was diagnosed, and now, three years since my surgery, I'm going to do it again.
I have never felt comfortable asking friends or family for money to support whatever cause I happened to be involved in at any given time, and I also have rather puritanical ideas about how much money raised by such events should go straight to the cause, but usually doesn't because of “overhead.” But I'm doing the ride anyway, if for no other reason than to signify that I am completely back to “normal.” Twenty-five miles, given the way my professional and personal calendars interlock, has always represented a good “long” ride for me, about two hours long — I just don't have the time to spend an entire day on a bike, and have no wish or need to prove to myself through some gargantuan effort that I am once again a vital and healthy person; I barely skipped a beat after my treatment.
I interviewed four urologists before I chose to have treatment at UConn, and was very satisfied with the care I got from mine (in fact, the same physician operated on Calhoun and me); the support staff was also, overall, competent. And we're at a point in our lives where I can afford the $200. But the coincidental occurrence of the Calhoun event and recent headlines illustrates that a lot of the “innovation” that needs to be done in the industry isn't dependent on any sort of technology — it's a more profound realignment of the entire relationship between patients and clinicians. It's not a new idea, but we have barely started. In fact, we may have yet to make any significant progress at all.
Earlier this week, the Healthcare Innovation Center posted a story about research from Johns Hopkins University which showed that women in their 40s are continuing to ask for routine mammograms despite the recommendation from the Preventive Task Force that such screening need not begin for women not considered at risk until 50. And the most interesting passage from the Hopkins news release paints an even starker picture of the disconnect between the new guidelines and the real world:
“The original USPSTF guideline change recommended more forcefully against routine screening for women in their 40s, but a political and advocacy group backlash (my emphasis added) resulted in compromise language that counseled individual decision-making by patients and physicians. The American Cancer Society continues to recommend yearly mammography for women starting at age 40.”
And literally, no more than six hours after that was posted to the HCIC, I got this email from Coach Calhoun (actually from the event marketing firm representing the ride, not from Coach himself):
Did you know that your registration for the Jim Calhoun Cancer Challenge Ride and Walk pays for one woman to receive a comprehensive breast cancer screening at the UConn Health Center she would not otherwise be able to afford?
That is one mom, one sister, one daughter whose life you may be saving…
Cancer is a truly terrible disease and your willingness to help me in past years has made a real life difference for cancer patients in our State.
On June 8th – change a life by registering to ride or walk with me again in the Jim Calhoun Cancer Challenge Ride and Walk.”
I found the juxtaposition rather interesting, and immediately found myself with a couple observations and questions:
1) There are, as healthcare professionals know, many, many different types of cancer. So why did breast cancer screening, which does indeed get more publicity than you could shake a stick at, get exclusive billing in Calhoun's appeal?
2) As a prostate cancer survivor, I'm naturally interested in educational and clinical advances addressing that. I am guessing the folks who organize the ride have no way to link their databases with the health center's, if for no other reason than HIPAA shakes, but if somebody's asking me to “raise as much money as I can,” having some sense of where I might have been might be more effective than a shotgun blast.
3) And, lastly, even if they can't link my former status as a UConn patient with my current status as a rider, they certainly should be able to see that I ALREADY REGISTERED for this year's event. Asking me to register post-facto to help “beat breast cancer” does not impress me.
I'm not singling UConn out here. In fact, not an hour's drive from UConn, the annual ride for the Yale Smilow Cancer Center has a $400 minimum fundraising fee, but maybe the Calhoun Ride folks — and the people behind just about every other “awareness” campaign — should read the piece in Science Daily referring to a corker of an editorial in the British Medical Journal called “Let the Patient Revolution Begin.” The abstract from the BMJ piece alone is absolutely scathing in its description of the modern healthcare industry:
“Patients lack information on practice variation, the effectiveness of their care, and the extent of medical uncertainty. Practice is informed by an incomplete research base bedeviled with selection and reporting bias, and at worst fraud. The preservation of institutional bureaucracies, as well as professional and commercial vested interests, have consistently trumped the interests of patients. The healthcare industrial complex stands accused of losing its moral purpose. This corruption in the mission of healthcare requires urgent correction. And how better to do this than to enlist the help of those whom the system is supposed to serve—patients?”
I can't say for sure how I'd like to see healthcare organizations reach out to patients, because, truth be told, while each party's stated utopian goal is the same — a healed and healthy patient — how we get there has some antagonisms involved, and I don't know that the people in charge of brand awareness at any hospital would really like to hear my take. Would the typical “patient engagement” strategist be willing to bring in folks who have experience with a certain course of treatment, and who may very well tell patients just embarking upon their own travail that maybe, just maybe, they should really push their doctors hard about why that extra MRI is really necessary? Would the prospect of an idle machine be more alarming than that of a patient, who in retrospect, can't see a good earthly argument for some things, and who is willing to share that with others?
Right now, it's easier to tell well-intentioned people how much good they're doing and promise them the chance to meet famous folks and maybe get on TV if they rake in the cash. It worked for this year, at least. The prospects for next year, I can't say for sure they're all that rosy.
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