I meet people several like you on a daily basis. It is always a pleasure to meet you since you come much more prepared compared to the average patient. I have seen you with several sheets of paper or even a notebook, a list of questions and an extra sheet of paper on which to write recommendations. You may even have printed research papers and articles off the Internet.
I applaud your efforts. Your engagement and attention to detail mean that I feel very confident you understand and will follow through on discussions we have and steps we decide on. I am always happy to have you work through your list of questions and concerns, making sure that we have addressed them all. Listening to you also makes me a better communicator since you teach me the perspective of the non-medically trained person. When I do meet a patient not as prepared as you, I actually try to explain things based on questions I recall from you.
Sometimes you ask me, “I hope you don’t mind, but I’ve done some research.” You ask if it is OK to discuss the papers and articles you found, the treatments you learned on the internet. In considering this question, I have come up with a list of dos and don’ts that you might want to consider.
Do bring your researched articles along. I love to discuss your research with you. I appreciate the opportunity to explain why you are correct in your assumptions about disease and treatment. I like to seize the opportunity knowing that you want such information to print out helpful articles for you and suggest websites to visit. The questions you ask and the material you find online inform me so much that I use it all in speaking to other patients who are not as prepared as you are.
Do keep it concise. On a typical day, I may have at least 12 to 16 patients to go through in 30 to 60-minute slots that follow each other without breaks. During that time, I have to keep up with an avalanche of test results that come in, phone calls from colleagues about mutual patients and questions from nursing and other clinical staff. My only break in the working day is usually a harried meal over a lunch meeting. I don’t have much wiggle room. If you want me to review your researched articles, it is best that you find a concise article — maybe no more than a one-half page. If you want me to review a lengthier document, consider dropping it off at my office at least a few weeks in advance. That way, I might have a weekend or weeknight to go over it.
Don’t dictate, rather discuss. It is counter-productive when you insist to me that your treatment must follow what you found on the internet. Remember that whoever wrote the articles is usually writing generally. They do not know details of your diagnosis, your medical conditions, exact health situations and such. The people on the chat forums are usually outliers who either had a particularly great experience or a rough time. You don’t hear from the majority of individuals who had an unremarkable course and don’t waste time writing about it. You may not know that your research is outdated, thanks to new material presented at a conference three months ago. You may not know that, although a treatment is FDA approved, I have personally seen patients identical to you and have a lot of side effects with it. You may not know of ethnic and geographic differences in response to treatment. Perhaps, a treatment commonly used in Japan may not be as popular in the U.S. because there were negative clinical trials in the past. Considering such examples, it is best to present your research for a discussion rather than dictating what you think it ought to be.
Do be patient if I need to look up something. Occasionally, I might tell you that I want to look up something. Medicine is so broad that no one knows more than a specialized area. I may want to connect with colleagues in the same or different specialties. I may want to review some updated literature. I may want to contact my clinical pharmacist. Please accept that I may want to take some time to do all that before getting back with you.
Don’t be frustrated if you are totally wrong. There is a reason why physicians like me spend five to eight years in college or university before obtaining our medical degree followed by three or more years in residency and fellowship before we are allowed to practice independently. Medicine is not and will never be an exact science. We learn from the texts and papers we study over the years. And then, we learn from a large volume of patients we encounter in training and beyond. Even before we start learning about disease, we learn about the normal/healthy state of the human body in the classroom for at least two years. At the end of it all, we can tie symptoms together to figure out what might be going on. We also know what is exceedingly unlikely for each situation. Be aware that you might narrate your symptoms and what you think is the diagnosis, only for me to say that is exceedingly unlikely. Keep your mind open. My knowledge base is meant to help you.
Good luck in your attempts to utilize self-directed research as a means of self-navigation.
Uchenna O. Njiaju is a hematologist-oncologist who blogs at Erica Oncology MD. She can be reached on Twitter @ericaoncmd.
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