Scaling PatientsLikeMe via a “Generalized Platform” for Members with Chronic Illness: Web-Based Survey Study of Benefits Arising

Abstract

BackgroundLaunched in 2006 for patients with amyotrophic lateral sclerosis, PatientsLikeMe is an online community offering patient-reported outcomes, symptom tracking, and social features. Every member of the site can see all the data reported by every other member, view aggregated reports, identify “patients like them,” and learn about treatment options in order to live better with their condition. In previous studies, members reported benefits such as improved condition knowledge, increased medication adherence, and better management of side effects. However, the site evolved in 2011 from condition-specific “vertical” communities consisting only of people with the same disease to a “generalized platform,” in which every patient could connect with every other patient regardless of condition and with generic, rather than condition-specific, data tools. Some, but not all, communities received further custom tracking tools.ObjectiveWe aimed to understand (1) whether members of PatientsLikeMe using the generalized platform still reported similar benefits and (2) assess factors associated with benefits, such as community customization, site use, and patient activation.MethodsA cross-sectional retrospective custom survey was fielded to 377,625 members between 2016 and 2017 including the Patient Activation Measure (PAM). A benefit index was developed for comparability across conditions.ResultsThe invitation was viewed by 26,048 members of whom 11,915 did not respond, 5091 opted out, 1591 provided partial data, and 17 were screened out. Complete responses were received from 7434 participants. Users perceived greatest benefit in understanding how their condition may affect them (4530/6770, 66.91% participants, excluding “does not apply” answers), understanding what might help them live better with their condition (4247/6750, 62.92%), which treatments were available (4143/6898, 60.06%), understanding treatment side effects (4182/6902, 60.59%), and important factors in making treatment decisions (3919/6813, 57.52%). The benefit index was 29% higher for the “most activated” patients (PAM level 4 vs PAM level 1; relative risk [RR]=1.29, P<.001), 21% higher for conditions with some community customization versus none (RR=1.21, P<.001), and 11% higher in those using the site most often versus least (RR=1.11, P<.001).ConclusionsMembers of the generalized platform reported a range of benefits related to improved knowledge and understanding of their condition and treatment management. Condition-specific customization may improve their experience still further. Future studies will explore longitudinal changes to patient activation.

Characteristics and Symptom Severity of Patients Reporting Systemic Lupus Erythematosus in the PatientsLikeMe Online Health Community: A Retrospective Observational Study

“…When patients have serious and chronic diseases, they increasingly seek information online and engage in online health communities [7][8][9]. Online health communities and research networks allow patients to connect with each other, share experiences, and learn more about how to manage their condition effectively [7,10]. In addition to the value they bring to patients, online health communities and research networks can also provide important insights into chronic diseases to improve health care [11][12][13].…”

Roles in the Discussion

“…This specialized platform was initially designed explicitly to support patients in meeting with others with similar diagnoses and symptoms. The platform eventually evolved away from these specialized "verticals" or topics into an attempt at a generalized platform [79], a move that likely limited the ability for patients to commiserate in the ways we observed within this online PWD community.…”

The Missing Reality of Real Life in Real‐World Evidence

“…Sleep patterns, mood, physical activity, and biometrics, such as weight, pulse, and blood pressure, can easily be tracked, synced, and visually displayed in smart phones, tablets, and other Web‐based environments. For people living with health conditions, digital technologies, social media, and patient networks have opened up opportunities to learn, track, and share their personal experience data leading to better health and improved outcomes . There exists untapped potential for regulators to learn from data collected in patient networks and communities about treatment‐related experiences, including the use of regulated products for unapproved purposes, often referred to as off‐label use.…”