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Informed Patients as Micro-Experts; Web and Patient Education

Posted Apr 29 2013 12:00am

I have always been supportive of the opportunity that the web provides for patients to learning about their diseases, compare their experiences with other patients, and learn about new therapies. This has been called participatory medicine in the past (see: "Participatory Medicine" and Its Relationship to Clinical Lab TestingRecruiting Office Patients into a Participatory Model of Healthcare DeliveryThe Future of Healthcare and the Four P's: Preventive, Predictive, Personalized, Participatory ). Below is an excerpt of an article discussing how new web patient resources are popping up that enable education and greater participation in care (see: A Former Google Exec Aims To Power A Patient Revolution ):

Well-educated patients can have a valuable voice in drug development. More than that, patient empowerment is now a real force in changing medicine, she says....Information is power. If the hierarchy of doctors are the only ones that have that power, that puts patients at a disadvantage. The power dynamic as a partner, as someone who has a stake in it, is different.... Smart Patients is building on the [Association of Cancer Online  Resources] ACOR experience by using the Web to do things that a mailing list can’t. On ACOR, as on older Internet communities like mailing lists and message boards, conversations are siloed with little cross-communication. If you have kidney cancer, you interact with other people in the kidney cancer group. But Smart Patients will also show you messages from other groups if they’re relevant. For instance, a kidney cancer patient with bone metastases, Smart Patients might direct you to conversations going on about cabozantanib, a drug for bone metastases in other diseases being developed by Exelixis....It also contains a search engine for clinical trials that Zeiger hopes will be easier to use than the one on the government’s ClinicalTrials.gov site, and there can be individual discussions formed around each study. [A spokesperson for Smart Patients] points out that this does not mean that patients have to be experts in their disease. Instead, each can become a “micro-expert” about part of his or her disease, and the community can serve to pool that knowledge....[He] hopes that his community will be self-correcting, especially with so many other doctors and experts around. 

I have been searching for years for a name to capture the idea that some patients become so knowledgable about their diseases, particularly rare ones, that they can sometimes approach the knowledge of the physicians caring for them. Prior terms such as informed or educated patient never seemed to capture the essence of this. However, the term micro-expert, used in the excerpt above, does seem highly descriptive. Here's a couple of links to articles that provide more ideas about the micro-expert patient:  THE EXPERT PATIENT AND THE OPPORTUNITY FOR PHARMAExamining the microexpert role to improve clinical trials . Look for the pharmaceutical industry to help drive the notion of the "informed" patient. They are harnessing web sites, often inappropriately, to help market their prescription drugs and also gain more knowledge about the efficacy and side effects of their drugs. They have been previously warned by the FDA about the misuse of social media for marketing purposes (see: Limitations Placed on Big Pharma Facebook Pages ).

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