“Tell me again, Curmudge, why I should become an expert in the diagnosis and treatment of a disease that I presumably have. I’ve heard that a little knowledge is dangerous.”
“Jaded Julie, a little knowledge isn’t dangerous if you discuss it with your physician. Furthermore, it rarely stays little, especially if you have a life-or-death driving force to learn more. There may be a time when your physician will present you with a choice between two apparently equal therapies; you’ll feel better choosing based on understanding instead of just flipping a coin. There might also be instances when treatment decisions involve a trade-off between potential benefits and risks; you’d certainly want to be an informed participant in that discussion.”
“Have there been cases where the patient’s study of diagnosis and treatment made a difference?”
“Read Chapter 5 of Dr. Groopman’s book, Julie (1). A mother’s knowledge—and especially her persistence—saved her daughter’s life. And if you don’t have access to the book, read about Meg Gaines’s experience with ovarian cancer.”
“But, Curmudge, Ms. Gaines’s life was saved by a new procedure performed far from home that wasn’t evidence based.”
“True. But she wouldn’t even have known about the procedure had she not studied her disease and learned of the best medical centers at the forefront of clinical research on ovarian cancer. After her experience she founded the Center for Patient Partnerships in Madison (2). She advises patients to ‘act as if your life depends on it, because it does,’ and to become an active patient ready to make your own way through your disease and its treatment.”
“Okay, Professor, I’m convinced. Teach me more about how to become my own best caregiver.”
“As I promised last week, we’re going to be looking into more technical literature. A Cochrane Review is a scientific investigation into the literature on evidenced-based health care, including randomized controlled trials and sometimes non-randomized observational studies. Individuals without a subscription click on Browse Free Summaries at the bottom of the page and then enter the disease of interest under Search Abstracts and Summaries.”
“Without your instructions, Curmudge, I would have had to follow my nose through these documents like you did.”
“It’s called trial-and-error, Julie, but it’s amazing what one can learn. You next select a title that interests you from those listed under your disease, and out pops a two-page summary. It contains a one-paragraph Summary of the disease, results of completed clinical trials of proposed treatments, and trials that are ongoing. The Main Results section is more technical listing numbers of patients, details of the trials, and some statistics on the results. Findings are summarized in the Authors’ Conclusions. Also given are the dates that the review was published online and when it was last assessed as up to date.”
“Okay, Curmudge, I think my brain is getting better at handling technical information. How can I find a discussion of my disease that is truly comprehensive?”
“Go to http://emedicine.medscape.com/. A page will appear inviting you to Browse by Specialty (within the main categories of Medicine, Surgery, and Pediatrics). Then search under disease categories such as these under Medicine: Emergency Medicine, Hematology, Pulmonology, etc. You should find a very detailed review of your disease, including results of clinical trials. The language will be technical, but the gist of the findings should be evident to the layperson. If I had to select the site that would yield the most information from just three mouse clicks, this would be it.”
“You have been mentioning clinical trials, Curmudge. If I wanted to participate in one, how would I learn more?”
“I’ve found a couple of routes to the same end point, Julie. Start with http://gateway.nlm.nih.gov/. At the home page, NLM Gateway, fill in the box with your request for ‘clinical trials on (your disease)’ and click on Search. Then under Consumer Health Resources click on ClinicalTrials.gov. That will yield a listing of trials that pertain to your disease. This will show for each entry the title, condition (disease), URL, and status (Terminated, Active, Recruiting, Completed). Click on the URL for details, including Purpose, Study Design, Criteria for Inclusion or Exclusion, Locations, and person to contact.”
“What about the second route?”
“That one starts at http://clinicaltrials.gov/. Follow your talented mouse to the same details as above. If you see a trial that is recruiting and interests you, discuss it with your physician. Remember, however, that a trial is just what the name implies. You might be in the population that receives a placebo, or the treatment under study might turn out to be ineffective.”
“I suspect, Curmudge, that our discussion of this topic might turn out to be endless and increasingly technical. This might be a good time to pick up our pieces of new knowledge and go home.”
“You’re right, Jaded Julie, but I hope we can talk more about this next week. Meanwhile, happy googling.”
Affinity’s Kaizen Curmudgeon
(1) Groopman, Jerome. How Doctors Think. (Mariner Books, 2008)
(2) Center for Patient Partnerships: Comforting the afflicted.
http://www.patientpartnerships.org/
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment