Paul Wicks|Michael P. Massagli|Jeana Frost|Catherine A. Brownstein|Sally Okun|Timothy E. Vaughan|Richard N Bradley|James Heywood
Sharing Health Data for Better Outcomes on PatientsLikeMe
PatientsLikeMe (United States)|PatientsLikeMe (United States)|PatientsLikeMe (United States)|PatientsLikeMe (United States)|PatientsLikeMe (United States)|PatientsLikeMe (United States)|PatientsLikeMe (United States)|PatientsLikeMe (United States)
patientslikeme online quantitative personal research platform patients lifechanging illnesses share experience using patientreported outcomes find patients like matched demographic clinical characteristics learn aggregated data reports others improve outcomes goal website help patients answer question given status best outcome hope achieve get thereusing crosssectional online survey sought describe potential benefits patientslikeme terms treatment decisions symptom management clinical management outcomesalmost 7000 members six patientslikeme communities amyotrophic lateral sclerosis als multiple sclerosis ms parkinsons disease human immunodeficiency virus hiv fibromyalgia mood disorders sent survey invitation using internal survey tool patientslikeme lenscomplete responses received 1323 participants 19 invited members betweengroup demographics varied according disease community users perceived greatest benefit learning symptom experienced 72 952 1323 rated site moderately helpful patients also found site helpful understanding side effects treatments n 757 57 nearly half patients n 559 42 agreed site helped find another patient helped understand like take specific treatment condition patients found site helpful decisions start medication n 496 37 change medication n 359 27 change dosage n 336 25 stop medication n 290 22 almost participants n 1249 94 diagnosed joined site n 824 62 experienced change confidence diagnosis increased level confidence n 456 34 use site associated increasing levels comfort sharing personal health information among initially uncomfortable overall 12 patients n 151 1320 changed physician result using site figure doubled patients fibromyalgia 21 n 33 150 patients reported communityspecific benefits 41 hiv patients n 72 177 agreed reduced risky behaviors 22 mood disorders patients n 31 141 agreed needed less inpatient care result using site analysis web access logs showed participants used features site eg posted online forum perceived greater benefitwe established members community reported range benefits may related extent site use third party validation longitudinal evaluation important next step continuing evaluate potential online datasharing platforms