I’m a squandered data point and so are you. It’s probably safe to say most every patient’s value isn’t exploited. We become isolated consumers of anecdotal value in the mind of our physicians. But we shouldn’t be squandered data points! We posses the most important data of all – namely our quality of life after treatment. Following and tracking data should be a priority for healthcare providers. For after-all how can anyone really know if the treatment was helpful or harmful?
There’s a lot to say on the topic of our healthcare industry squandering data. The value of case studies should be self evident but yet I’ve never had one GI physician pull out a Crohn’s case study and talk to me about our similarities and differences. If I were a physician I’d collect data, talk to patients about what works for them, record it, plot it, post it on the internet, show it to other patients, and do everything I possibly could to double check the claims of the drug companies. I’d partner up with other physicians doing the same thing and make case study after case study. And most importantly I’d find a way to aggressively learn from mistakes. There’s not a better way to study mistakes than being methodical about each patient’s data.
Below is a case study of a me, a Crohn’s disease patent. Crohn’s is complicated and the details of the patient are very important. There are simple plots below to help navigate my experience. The plots (as well as more detailed medical history) also appear in the 10 Years of Crohn’s Inforgraphic. Isolating and arranging the charts should make for a better comparison. The first is a list of the drugs I’ve taken over the last 10 years for Crohn’s and related symptoms. The second chart is for the total cost for each year. And the third is how I would rate my life’s overall quality. It’s really surprising that no physician has ever asked me about the quality of my life. [Click image to enlarge.]
There are some remarkable qualities to think about from these plots. A big one is the huge drop in price after surgery. It also corresponds exactly to an increase in quality of life. But there’s a lot more to these pictures. The conventional wisdom in treating Crohn’s is to delay surgery. But why? It’s apparent that long term use of Remicade resulted in a much greater cost. It just delayed surgery and was at least a $20,000+ per year expense for five years. In retrospect it would’ve been much better not to delay surgery. This is true both in terms of cost and quality of life.
In 2001 when I first got Remicade it was relatively new for Crohn’s patients. I was one of the first of my GI doctor’s patients to receive the drug. I’m sure part of the appeal of the prescription was that it was new and had recently been approved for Crohn’s treatment. At the time I didn’t know enough to question the decision. Nor was I informed of the options. And this is entirely my point. Both physicians and patients should review case studies. There’s no reason why an informed patient can’t make a decision about long term Remicade vs Surgery, for example.
Another remarkable attribute of the data is the addition of Vitamin B-12. My symptoms of a Vitamin B-12 deficiency were misdiagnosed as depression – a common problem especially from Crohn’s sufferers. (See Could It Be B-12?) A combination of B-12 and surgery is responsible for the increase in quality of life.
To carry on the chart to 2012 my current maintenance regime for Crohn’s treatment is: a low stress lifestyle, exercise, yoga, an anti-inflammatory diet, psyllium husk a few times a day, Vitamin B-12 injections once a month, lecithin, Vitamin D with calcium, a multivitamin, and sometimes, when I remember, a probiotic. I dropped the azathioprine about 7 months ago when I made dietary changes. The only thing I’ve noticed is that my knees don’t ache anymore and I don’t experience any more fatigue. I’ve also found that the psyllium husk is just as effective as Questran or Welchol and it’s about a tenth of the cost and available in the grocery store.
My projected cost for 2012 Crohn’s disease management is under $800. Thank you surgery I wish I’d had you sooner.