Sharing health data for better outcomes on PatientsLikeMe

Area of Science:

• Health Informatics
• Patient-Reported Outcomes
• Online Health Communities

Background:

• PatientsLikeMe is an online platform for patients with life-changing illnesses.
• It facilitates sharing of patient-reported outcomes and data aggregation.
• The platform aims to help patients optimize their health outcomes.

Purpose of the Study:

• To describe the benefits of PatientsLikeMe for patients.
• To assess impact on treatment decisions, symptom management, and clinical outcomes.

Main Methods:

• A cross-sectional online survey was distributed to nearly 7,000 members across six disease communities.
• Survey invitations were sent via the PatientsLikeMe Lens tool.
• 1,323 participants completed the survey, representing a 19% response rate.

Main Results:

• 72% of users found the site very helpful for understanding experienced symptoms.
• 57% found it helpful for understanding treatment side effects.
• 42% found it helpful in connecting with other patients about treatments.
• 37% found it helpful for decisions to start medication, with higher rates for symptom understanding.
• 12% changed physicians due to site use, notably 21% of fibromyalgia patients.
• Increased site feature usage correlated with greater perceived benefits.

Conclusions:

• PatientsLikeMe members report diverse benefits, potentially linked to platform engagement.
• Further third-party validation and longitudinal studies are recommended.
• Online data-sharing platforms show potential for improving patient outcomes.