Sharing Health Data for Better Outcomes on PatientsLikeMe

Abstract

BackgroundPatientsLikeMe 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?”ObjectiveUsing 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.MethodsAlmost 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).ResultsComplete 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.ConclusionsWe 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.

The Benefits of Online Health Communities

“…Privacy concerns associated with sharing health information online include possible discrimination by the employers, insurance companies, friends, or family of those who post [8]. There are also concerns about "potential 'data intruders'…with motivations ranging from personal research, genealogy, ancestry, forensic purposes or use in marketing, insurance, or employment decisions" [8].…”

“…There are also concerns about "potential 'data intruders'…with motivations ranging from personal research, genealogy, ancestry, forensic purposes or use in marketing, insurance, or employment decisions" [8]. In the research context, institutional review boards (IRBs) may be concerned about how information from online health communities is being collected and used as they strive to protect research participants from invasion of privacy [18].…”

Cancer Control and the Communication Innovation in South Korea: Implications for Cancer Disparities

“…cancer) are shown to exchange information online twice more often than patients of nonchronic diseases . Also, patients who actively seek advice online and exchange words of social encouragement are shown to result in better health outcome (Wicks et al, 2010). Therefore, by supporting cancer survivors to take advantage of the communication innovation by using the 'grassroots participatory model,' the management of patients' cancer across their cancer continuum can greatly assist the patient.…”

Online Social Networking: A Primer for Radiology

“…Patients can leverage their discovered knowledge en masse to find and discuss possible avenues of treatment. An internal survey within the site concluded that 12% of the patients changed their physician's opinion about their course of treatment through information they received on the website [6].…”

“…The rate limiting step to this empowerment is access to the technology however. Reducing power distances to patients have shown to improve patient confidence in starting, stopping, or making changes to treatment regimens [6].…”