Opening
data to patients raises questions. Will worried patients inundate
physicians with time-consuming questions? Will sharing patient data add
to legal risks? One detail in the yearlong study of OpenNotes underlines
doctors’ concerns; 105 primary physicians completed the study, but 143
declined to participate.
Still,
the experience of the doctors in the evaluation seemed reassuring. Only
3 percent said they spent more time answering patient questions outside
of visits. Yet knowing that patients could read the notes, one-fifth of
the physicians said they changed the way they wrote about certain
conditions, like substance abuse and obesity.
Evidence
of the benefit to individuals from sharing information rests mainly on a
few studies so far. For example, 55 percent of the members of the epilepsy community on PatientsLikeMe, a patient network, reported that sharing information and experiences with others helped them learn about seizures, and 27 percent said it helped them be more adherent to their medications.
