Health science journalist Julie Rehmeyer:
Journalism lacks the concept of a patient expert. Patients are viewed as victims whose victimization should be described. But the idea that your story MUST include a patient who’s studied their disease deeply, as a researcher, activist, journalist, whatever, is absent.
Some of the most expert people I know are patients, and not just because they are experienced (although experience also counts for a lot). They are intellectual masters of all there is to know about their own illness and every scrap of related biology, and always hungry for more and better data.
This article by Julie — “How to Report with Accuracy and Sensitivity on Contested Illnesses” — should be required reading for anyone who writes about healthcare. (Especially all the clinician bloggers, who should read it weekly. Not all clinicians are even good at being clinicians, let alone journalism.)