I'm not a health professional nor a scientist, "just" a patient. My disorder is Delayed Sleep-Phase. My favorite list is "niteowl" hosted at circadiandisorders.org.

If no researchers use the content/archives of such lists in designing their "qualitative" studies, they should. By the types of questions asked and answers given, one can discover what patients do and do not understand about their disorders and treatments. Recent example (I'm not making this up): "The doctor said to continue taking it for a month, but it just seemed like a bad idea..." In this case I sided with the patient and tried to explain why.