Many of my patients come in having already looked up their symptoms. Frequently, this admission is accompanied by a mumbled apology, an acknowledgment that doctors "hate that."
I do not disapprove of patients looking up their symptoms at all. I find that their online forays only enrich the discussion because they are prepared for the meeting and have excellent questions. I appreciate their curiosity; it serves the pedant in me well. Not only do I get to explain what is not clear, I also get to correct misinformation.
It also indicates a sense of ownership, participation rather than passivity. The patients are engaged in coming up with a treatment plan, and hopefully this translates into compliance. Patients have asked about dietary modifications for their gout, pool exercises for their osteoarthritis, or the wisdom of biologic treatments in light of their past breast cancer. I think it provides patients with a sense of some degree, however small, of control over their disease and its treatment.
But not all information is created equal, and I think some information may be more fraught for a nonmedical consumer.
At the moment, there are some electronic health record (EHR) software programs that give patients access to some lab results. This can be quite handy; for example, I’ve been saved the trouble of interrupting a patient visit to track down lab results because the patient could access the results using his smartphone.
But it can be pernicious, too. The fine art of medicine does not always lend itself to discrete labeling. Think of all the slightly elevated creatine kinases, erythrocyte sedimentation rates, and antinuclear antibodies that you encounter daily, as well as the training that you went through to understand what to do with these mildly abnormal labs. For all our focus on evidence-based medicine, there is a great deal of nuance to what we do, and nominal "normal" vs "abnormal" results can be misleading at best and anxiety-provoking at worst.
In addition, we may someday be required to allow patients to see office notes. Already I’ve received a handful of angry phone calls from patients because they got a copy of my note. One patient was mad because he thought I called him anorexic (he calmed down when I explained what anorexia meant). Another patient was angry because I used obesity as a diagnosis (she, on the other hand, did not calm down at all). I had a patient come in for her follow-up visit with a copy of my first note, which she had very heavily annotated with details that were irrelevant in a medical context, demanding that I modify my first note.
You may have heard of the study published last October in the Annals of Internal Medicine (2012;157:461-70), in which 105 doctors in three different health care systems allowed more than 13,000 patients to read their notes for a year. Overall, the results were not bad. Doctors felt that it improved transparency and shared decision making, and patients agreed that it fostered trust.
But a minority of patients did report feeling anxious or offended. One out of three felt that they ought to be able to approve the note. And doctors reported having to modify their note – not discussing alternative diagnoses, for example, or not being as candid about obesity. Which belies the idea that the system "improved transparency," no?
I have an old mentor who used to say that in order for consent to be truly informed, the patient should have also gone to medical school. If we are being frank, we ought to admit that there are limits to what a patient can understand, and full disclosure may not be always be appropriate.
Dr. Chan practices rheumatology in Pawtucket, R.I.