Recently, when communicating this online with a physician in a discussion about "zebras" in healthcare, he made several points which eventually led to a discussion of reform. Each made sense from his point of view and I understood what he was saying. But I wanted him to see my point of view as a patient.
First Point: "An unusual case is more likely to be an unusual presentation of a common disease, rather than a rare disease itself."
Perhaps that is true. As patients with Cushing's (and I believe other "zebra" diseases), we are more a conglomeration of "usual" presentations which are treated piecemeal rather than taken as a whole. Together, these should give a physician an "aha" moment. But most of the time, in our experience, they do not. And part if this is due to the way each symptom is farmed out to a specialist. Many PCP's don't take the time to see the "whole" and put it all together.
Second Point: "As a patient, you can provide information for other patients."
Mary O'Conner had Cushing's in the 80's with no support whatsoever; she had no help or information other than what she gleaned at her library. Thanks to her hard work and dedication, she founded the cushings-help.com website and message boards, which she still single-handedly runs with it's thousands of members. Without those message boards (forums), many of us would be dead or suffering with the disease. (In fact, several we have known have died from it.) It's strong, vibrant, and supportive community. We know how to test, where to test and when to test due to that. We know who the specialists are (and I don't mean those who profess to be, but those who actually practice like they are), and they know us.
Mary Shomon has been instrumental in sharing and coordinating information about thyroid disease with patients. She hosts an active support board as well as several web sites. Other groups with other diseases do the same.
There is a growing group of patients providing support and information through blogs. Our Cushing's group is one. I know there are many others about other zebra diseases. Each group will tell you that they have gleaned much more support there than in a doctor's office.
What influence does this have on healthcare? We take in recent journal articles, research, and whatever else we can find to educate our doctors. We "fire" some, and "hire" others. We spread the word about both sets of doctors. Yes, the internet is a fabulous tool. Which brings me to the next point.
Third Point: "The internet itself is helpful in dispensing useful information for patients."
I did a reader's take for KevinMD a while back on that very thing. I often fight that battle with doctors who say I "read too much on the internet" as if they are the only smart folks in the world. (I realize not all doctors are like this.) I am able to find and download recent research about my disease. Sadly, though, not all patients have the resources or the background to do that. This means those of us who do need to share with those who do not.
Fourth Point: "As a doctor, the biggest obstacle to thoroughly investigating some cases is simply having enough time to do so."
Some doctors have overcome the time restraints by going to coincierge medicine. Kevin Kelleher is using a business model which reduces the volume of patients he must treat to be a viable business. While he says he can give patients more adequate care with more time for each, this is no assurance of quality just because he is a doctor who wants a guaranteed income stream with less work. If enough doctors did this, however, perhaps the competition would guarantee better healthcare. I think the fifth point, below, will help with this if/when we can do it.
Fifth Point: "Reform the system."
This same physician with whom I was communicating had ideas about how to reform the system: Health Savings plans, changes in tax codes, eliminating government purchased healthcare (i.e. Medicaid and Medicare), etc. In other words, get rid of a controlled, third-party system.
I'm a fiscal conservative, and I would very much love to choose how and where I spend my money, since I now have to spend it where I'm told I can by insurance, plus spend out-of-pocket because the "where I'm told" isn't cutting it. If I choose to travel to those who truly do understand my disease, I have to pay. I made a conscientious and life-saving choice to do just that. That has financially limited other things in my life due to my adjusted priorities, but it has been worth it. Sadly, not everyone has that choice due to circumstances in his/her life.
I often ask, "When does the business of taking care of patients really become about the patient?" I realize it's only possible if those providing it get something from it, too. Yes, they need to make a decent living. I know that. Otherwise, I jokingly say sometimes I forsee a nation of pharmacists with no one to prescribe the medications.
I recently wrote an article about profitability in the business of healthcare. I said:
Where does this put those who cannot afford health care? That's the ethical quandary...Other folks really do have a dilemma between eating and shelter vs. insurance and health care monies. Where will they go? In a "for profit" system, seeing them isn't profitable. What happens then? In my naive eyes, I would hope there is some charity left for them. But even if not, it looks like offering tax breaks to those who serve the indigent may be a cheaper, win-win situation for all involved. Yes, that includes Uncle Sam. Besides, it doesn't seem fair to expect charity for nothing from a tax-paying business just because it's a healthcare industry when we wouldn't do that from our auto-repair folks.Our Cushing's blogs, including the two with which I'm associated, are to help those veering down the same path as we have gone or are going. Even more, they have a second objective: to hopefully make more folks in the medical community aware that we are people who suffer when we aren't tested, diagnosed, and treated correctly. Finally, it seems they are also being used for a third objective--the need for change in our healthcare system. This was not an intended objective, but I'm realizing it comes with the territory of the other two.
To read more:
From a patient's eyes: Healthcare for profit?
Dear Doctor, I can help....
Healthcare Crisis? Reform? What the medical blogosphere has to say.
It’s not our fault , says Dr. Rob....