Our dominant medical ethic is one of shared decision-making. These days, the internet provides medical information about disease and treatment through authoritative sites (like the CDC) or through access to primary sources (NIH library) that can supplement the traditional doctor-patient relationship.

Visualization is the courtesy of TheVisualMD.com

Eight in ten internet users search online for health information, the most common online activity besides checking email and using a search engine. Web-based personal health records are coming soon, accessed anywhere, downloaded to a phone, linked to recommendations and visual explanations. But most importantly perhaps, the web is also increasingly being used by patients to create on-line, disease-focused communities. 

In the 1980’s, during the early years of the AIDS epidemic, patients for the first time self-organized to sift through the unfiltered scientific literature in a dedicated and sophisticated way. In the 2010’s, people suffering from illness still crave insight into the varieties of experiences associated with illness, and now patients with multiple sclerosis, lymphoma, depression, and neuropathy seek “expert” patients online—those ahead of them on the illness trajectory.

They don’t only want to hear clinical trial-based prognoses suggesting what happens to patients “on average.” They want to know what will happen to them. Given my current clinical status, what can I expect, and does anyone know how to make my chances of survival better? Who on this site clinically looks like me and what did you do? They want second opinions (or 200 opinions) about what patients know best: how it feels.Tell me about that side effect. Tell me about whether it ever goes away.

At the same time as they learn about others’ experiences, patients want to share what they’re experiencing with a community of other sufferers. I am used to overhearing personal health information every time I sit in my local coffee shop as the couple at the table next to me inevitably gets around to discussing their symptoms and strategies. But now the coffee shop is on-line and I read more and more of it to learn what patients are thinking.

This transformation of patients from passive recipients of medical information provided by doctors to active participants in a collaborative community is one of the great medical advances of the past decade, made possible by new forms of social media. For medical providers, there is just one patient in the exam room at a time, but if your patient is part of an on-line group an invisible network attends every appointment.

Doctors have traditionally been authoritative filters of information, but they are under-trained for the interactivity which patients now demand. Rather than simply dispensing medical advice, doctors should be asking patients how they use the internet for medical advice, using it with them, or directing them to access points and sites like PatientsLikeMe where illness-peers interact and share data. This new-found information is now a potent caregiver.

We’ve entered a revolutionary era of patient self-advocacy.

Patients and providers who work together are finding, evaluating, and using hard-to-find information to guide treatment decisions and drive medical discovery. Medical providers are often invited to participate (to offer solutions or reassurance) in on-line patient communities, but too seldom engage, opting out as the modern social discussion of health proceeds.  But as more doctors embrace this new form of shared medical decision-making, and more patients visit instructive medical websites, there will be more conversations in exam rooms and livelier questions, greater clarification of misinformation, and more disagreement about the best course of action, and that’s just fine. 

MD Stein

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