Sheryl Stein’s e-patient interview was great in its own right, but she struck bonus paydirt when she responded to this question:
You say “So I began to research ITP and CVID, and I came to find out that people with CVID often *do* end up…” Where did you do that research? Journal articles, user communities, sites like the Mayo Clinic database?
Her response in the comments is almost as long as the whole original interview, and exemplifies e-patient principles and practices:
- being a cautious information user
- hunting and hunting, beyond the “usual suspect” sources
- speaking about her condition in a peer community
- finding information that supplemented what her specialist had in hand
- Even today, she speaks up about what would work for her, asking sites (especially public-facing government sites) to put their information in more patient-accessible terms.
As a fellow e-patient who had to research in a hurry, I related to her inability to get the information she needed from conventional well-respected sources – despite the archaic advice still dispensed by sites like CNN’s “Empowered Patient” column, as we detailed two months ago. So what did she do? Kept asking, kept looking, found it. That’s “e.”
Here’s to uppity women, in the form of e-patients! Now let’s find some e-guys with attitude, too.