Having spent the past week participating in a workshop for FDA patient representatives which included sessions on safety analysis and pharmacokinetics, giving a presentation on ways that e-patients can advance clinical research at the American Academy for the Advancement of Science, and being inspired by the E-Patient Connections conference in Philadelphia, I admit to being a bit tweaked at being told in ENT surgeon, Martin Young’s blog post “Are E-patients Experts in Their Own Diseases?” that I have no expertise to offer. I agree with the central point, particularly after a long conversation with my physician-husband, that patient bloggers should not make definitive recommendations about individual treatments for individual patients, but would be better off couching their remarks as based on whatever experience they have and instead offering key questions to raise or processing for evaluating options. However, I’d like to make two points (1) the case for e-patient expertise and (2) why patients turn to e-patient bloggers in the 1st place.
The case for e-patient expertise.
Not all patients who go online are e-patients or purport to be experts in any form or fashion. They are simply seeking information to help them make sense of some health issue intruding into their everyday lives. There is a burgeoning cohort of patients, however, who not only manage their own conditions in great detail, but read scientific journals, attend medical conferences, and online and off interact with hundreds if not thousands of patients (and often physicians). Wego Health does a great job of describing the depth and breadth of experience of this small percentage of health activists. To dismiss this group as simply being experts on themselves is shortsighted. They may not have the clinical expertise of a top physician thoughtleader but they have a range of insights and expertise in the disease state, in the field, and are often more well-rounded and informed than an average MD in one practice setting. I’d love the opportunity for CPE – continuing patient education – alongside CME. While the usual patient education brochures are great (I’ve even written some) as patients advance in their sophistication many of us would appreciate a level of education more akin to our physicians but with slightly less jargon and some support on the biostatistics.
Why patients turn to e-patient bloggers in the 1st place
I think we can all agree that the ideal scenario is for patients is to have a relationship with a highly-knowledgeable physician, or team of physicians who work collaboratively, who has the time to respectfully listen to all of our concerns and issues, ask probing questions, conduct comprehensive exams, order the right tests, and feed back the diagnostic information in terms we can understand, in concepts we can buy into, and translate into treatment plans that work with our lifestyles and values. Few patients have that. Not all of us can have @DrDannySands or @tedeytan as our physicians, unfortunately. Nor does the current healthcare “system” support physicians who would love to practice this way.
Too many patients feel rushed, dismissed, patronized, and confused. They return home asking themselves, “what did that mean?” and “what do I do next?” Good luck trying to communicate with your doctor or the doctor’s office by phone or email to get real answers at the time and in the setting where are comfortable and truly prepared to have the discussion. That’s when the online search begins for clinical definitions, symptoms, treatment options, but more importantly someone to help make sense of it all and help a patient figure out what all this information can mean for them and their lives. E-patient bloggers and online forums are viewed as credible sources for patients because they are psychologically safe places, patients can control the timing of the interaction, and because the information presented is relevant and personal. Doctors you created this gap. I’d be happy to lay not my laptop if you would fill it.
Excellent posts on the subect by @RAwarrior