Sharing health data for better outcomes on PatientsLikeMe.
BACKGROUND
PatientsLikeMe is an online quantitative personal research platform for patients with life-changing illnesses to share their experience using patient-reported outcomes, find other patients like them matched on demographic and clinical characteristics, and learn from the aggregated data reports of others to improve their outcomes. The goal of the website is to help patients answer the question: "Given my status, what is the best outcome I can hope to achieve, and how do I get there?"


OBJECTIVE
Using a cross-sectional online survey, we sought to describe the potential benefits of PatientsLikeMe in terms of treatment decisions, symptom management, clinical management, and outcomes.


METHODS
Almost 7,000 members from six PatientsLikeMe communities (amyotrophic lateral sclerosis [ALS], Multiple Sclerosis [MS], Parkinson's Disease, human immunodeficiency virus [HIV], fibromyalgia, and mood disorders) were sent a survey invitation using an internal survey tool (PatientsLikeMe Lens).


RESULTS
Complete responses were received from 1323 participants (19% of invited members). Between-group demographics varied according to disease community. Users perceived the greatest benefit in learning about a symptom they had experienced; 72% (952 of 1323) rated the site "moderately" or "very helpful." Patients also found the site helpful for understanding the side effects of their treatments (n = 757, 57%). Nearly half of patients (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition. More patients found the site helpful with decisions to start a medication (n = 496, 37%) than to change a medication (n = 359, 27%), change a dosage (n = 336, 25%), or stop a medication (n = 290, 22%). Almost all participants (n = 1,249, 94%) were diagnosed when they joined the site. Most (n = 824, 62%) experienced no change in their confidence in that diagnosis or had an increased level of confidence (n = 456, 34%). Use of the site was associated with increasing levels of comfort in sharing personal health information among those who had initially been uncomfortable. Overall, 12% of patients (n = 151 of 1320) changed their physician as a result of using the site; this figure was doubled in patients with fibromyalgia (21%, n = 33 of 150). Patients reported community-specific benefits: 41% of HIV patients (n = 72 of 177) agreed they had reduced risky behaviors and 22% of mood disorders patients (n = 31 of 141) agreed they needed less inpatient care as a result of using the site. Analysis of the Web access logs showed that participants who used more features of the site (eg, posted in the online forum) perceived greater benefit.


CONCLUSIONS
We have established that members of the community reported a range of benefits, and that these may be related to the extent of site use. Third party validation and longitudinal evaluation is an important next step in continuing to evaluate the potential of online data-sharing platforms.
Wicks
Paul
P
PatientsLikeMe Inc., Research & Development, 155 2nd Street, Cambridge, MA 02141, USA. pwicks@patientslikeme.com
Massagli
Michael
M
Frost
Jeana
J
Brownstein
Catherine
C
Okun
Sally
S
Vaughan
Timothy
T
Bradley
Richard
R
Heywood
James
J
D000328:Adult; D003256:Community Participation; D003430:Cross-Sectional Studies; D003626:Data Display; D003661:Decision Support Techniques; D019468:Disease Management; D005260:Female; D055991:Health Records, Personal; D006801:Humans; D033181:Information Dissemination / Q000379:methods*; D020407:Internet; D008297:Male; D008875:Middle Aged; D009862:Online Systems; D010817:Physician-Patient Relations; D011159:Population Surveillance; D035583:Rare Diseases / Q000175:diagnosis / Q000628:therapy; D012648:Self Care / Q000379:methods*; D012657:Self-Help Groups; D012944:Social Support