Table 1.

Major themes in Personal Health Information Management.

Themes	Summary	Representative quotes
A. Responsibility for managing medical information across organizational settings	Some patients perceive medical records management as the health care system’s responsibility, whereas others perceive it as their own.	“[The doctors] are supposed to have all the information. They’re supposed to look it up.”
B. What medical information should be shared?	Patients make frequent judgments about what data is relevant to their health and therefore should be shared or reported.	“The things that [the dermatologists] were doing really wasn’t, you know, something that [my primary care doctor] needed to know.”
C. Methods, tools, artifacts	Patients who took an active role in managing their records used electronic tools, paper, and memory	“I keep it in my head... I know the dosage, the day, for what is this medicine and how many times I [take it] daily.”
D. Managing medical information as “invisible work”	Managing transfers of medical information to solve problems such as health insurance denials is a tremendous amount of work that largely goes unrecognized.	“It’s hard enough when you’re healthy and you’re with it, and you’re feeling good… When you’re not feeling well at all, it’s difficult.”