The internet as consultant

I’m not sure when the change happened, but it was quite apparent this month. 

She was a new patient to me, having joined our practice after meeting and marrying the son of one of my patients. The visit was for evaluation of chronic GI complaints diagnosed during college as irritable bowel syndrome. She said her symptoms were somewhat improved with fiber and Imodium, but she still had bloating and intermittent loose stools. She came in with a folder of information from the internet, a printed summary of her medical history and GI symptoms and tests, and a page with the questions she wanted to address. “They told me I have IBS, but I think I may have Celiac disease, and I want to find out for sure before we get pregnant. I’ve done some research (pointing to her papers) and I’d like to get these tests (handing me a printed list).”

In medical school and residency, and for some years thereafter, I reacted negatively whenever patients announced their diagnosis, or suggested diagnostic or therapeutic options. It irritated me when they brought in a newspaper article or said they must have X like their aunt or grandfather. I recall with considerable chagrin how thin my veneer of graciousness was, and how hard I worked to defend my role as expert and maintain control.

How things have changed. 

“That’s great. This information can really help us get started. Let’s start with you telling me when your symptoms started, what they’ve been like, and how things have gone. I wasn’t your doc then, so I need you to catch me up.” (Her printed information was comprehensive but concise and well organized, but hearing the narrative from the patient gives invaluable context and clues about the patient. Much of medicine is about stories.) 

After her summary, we briefly reviewed the information she had collected. I told her theMayo Clinic material was her best find and that another site appeared to be a front for an undocumented commercial remedy. After filling in some gaps in her history and doing a brief focused exam, we ordered the celiac testing she had appropriately suggested, and I added some pre-pregnancy testing. Two weeks later she returned to discuss her new diagnosis of celiac disease, answer questions, connect her to our office dietitian, and make a plan for deferring pregnancy until she had been well controlled for 6 months. She told me that her two previous providers, a family physician and a gastroenterologist, had ‘blown off’ her questions and concerns about celiac disease, and that she was telling all her friends she had found a doctor who listened.

I am no longer put-off by patients who suggest a diagnosis, testing or treatment option based on Google, Facebook or Twitter. In fact, I increasingly suggest this approach. I can’t know or do everything, good outcomes are more likely in well-informed and actively engaged patients, and there is no reason to ignore powerful tools simply because I don’t own the tool.

There is a clear pattern emerging in my acceptance and use of patient activity on the internet as part of their care.

  • New chronic or serious disease: It would be delusional to think I can provide all the information patients with chronic illness need, or answer all their questions, within the confines of serial 15 or 20 minute office visits every 3 or 6 months. I tell the patient they need to become experts in their disease, explain that I will try to cover the high points or things that seem particularly relevant at each visit, that the internet can be a great resource, but that it includes both good and terrible information. If I can, I suggest one or two specific resources. (The Mayo Clinic site  and the AAFP site are my favorites.) Sometimes I tell them I will do some checking and get back to them about good resources, and I encourage them to let me know what sites they find.
  • Undifferentiated illness or unclear treatment options: Research by the patient can be invaluable. I can’t remember or think of everything. Our incredibly expensive and complex electronic record provides only very rudimentary decision-support: drug interactions, allergies, and occasionally disease-based warnings.  I am happy to have them widen the range of diagnostic and therapeutic possibilities and bring me information about new developments. 
  • Consultation. Like most clinicians, when I see a complex patient whose problem I am struggling to understand or manage, I like to “run this by” some trusted associates. Time and geography limit the number of colleagues I can ask. Online resources such as SERMO are excellent tools for this. Crowd sourcing on professional sites may have a better signal-to-noise ratio, but I don’t discount the value of patients doing this on their own using Google+, Facebook, or Twitter. I have learned that patients do this quite often, so I try to help them do it well and feel comfortable discussing the results with me.
  • Availability bias. I am grateful when patients with IBS to ask, how do we know that these symptoms are part of my irritable bowel syndrome and not something else? This helps me avoid the trap of availability bias (this sore throat is probably like the last five sore throats) and makes me think ‘outside the box’ about alternatives to the original or long-standing diagnosis. This improves patient care, educates me, and is intellectually stimulating.

Resenting or avoiding the library because one doesn’t own and control the books would make no sense. The internet can be a gateway to both broader and deeper knowledge for both the patient and provider, and can be the catalyst for productive discussions and true collaboration. Try it. You’ll like it.

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