PatientsLikeMe

Program Description

PatientsLikeMe was born out of frustration. When Stephen Heywood was diagnosed with ALS at the age of 29, his brothers Jamie and Ben found it difficult to find information about how to treat ALS symptoms and slow disease progression. The Heywood brothers and a family friend, Jeff Cole, developed an idea for a free community of patients that inspires, informs, and empowers individuals, and changes medicine for good. The company was initially launched in 2006 to connect ALS patients, but has grown to more than 600,000 members and 2800 conditions. This includes more than 60,000 members who report on their experience living with and treating psychiatric and substance use conditions. Unlike traditional social media platforms, PatientsLikeMe is a patient-centered platform that engages members actively in tracking and sharing their self-reported medical data (diagnoses, symptoms, treatment outcomes) so that they can see gauge their progress and help others learn from their experience. Patients are also able to participate in forums tailored to specific conditions, support fellow members, and join research studies. In addition, PatientsLikeMe engages with academic, pharmaceutical and other partners to conduct research, sharing the findings back to patients and ensuring that the patient voice is reflected in their research.

Creativity

Many research programs are developed by doctors and researchers with relatively little patient input. This is the traditional view in most clinical trials, where results often do not translate to real-world patient experience. PatientsLikeMe begins with patient-generated health data (PGHD) to define outcomes that are important to patients. By letting patients track their PGHD in one place, we can empower them to better manage their care, gauge their progress with behavioral health and other conditions, and compare themselves to others with similar conditions. In addition, we encourage our members to ask the tough questions that we can try to answer, like the 300 research questions we recently collected from members with major depression. With their help, we are designing research to try to answer these questions. Finally, data generated by our members helps mental health providers, companies, and partners get a real-world perspective on behavioral health and other conditions.

Leadership

PatientsLikeMe has always believed that patients are the most important stakeholder in treatment research. When we began a decade ago, this idea was met with skepticism. Can we trust the data that patients provide? Can they take an active role? Through our work with likeminded organizations (including the FDA, Robert Wood Johnson Foundation, NIH, PCORI, and University of Maryland PATIENTS program), this innovative stance has gained acceptance. Now, projects with our partners demonstrate that real-world evidence can improve the healthcare system, by providing a supportive, data informed, and nonjudgmental online environment that also enables these individuals to find their voice and take therapeutic steps forward. Patients play a pivotal role in our research partnerships with the world’s top pharmaceutical companies, federal agencies, research institutions and nonprofit organizations. Through our efforts, healthcare organizations, payers, providers, and researchers are beginning to implement patient-centeredness in psychiatric, substance abuse, and other behavioral health care.

Sustainability

PatientsLikeMe has been funded through venture capital, a recent association with iCarbonX, work with commercial partners (e.g., pharmaceutical companies), and grantors such as the Robert Wood Johnson Foundation. We also have extensive working relationships with academic, commercial, and nonprofit partners (https://www.patientslikeme.com/about/partners). Our work with partners, to whom we sell patient generated health data, enable us to fund expansion of our website, evolve available tools for patients, and keep membership free and the website free from advertising. PatientsLikeMe will be expanding data collection so that we can provide patients new insights by analyzing biological, behavioral and environmental data to find new signals about health, disease, and aging. Our goal is to help patients and researchers find earlier signals of disease and treatment response, so that new and better treatments can be developed. Note: PatientsLikeMe does not rent, sell or share personally identifiable information for marketing purposes, or without explicit consent (https://www.patientslikeme.com/about/privacy).

Replicability

Based on our work, we see a number of ways in which lessons learned and tools developed at PatientsLikeMe can be adapted in behavioral health care organizations: (1) leveraging the value of online communities to engage patients in their own care; (2) using of web-based and mobile tools to track clinical progress between appointments; (3) engaging patients in program design so that outcomes that they care about can be integrated; and (4) bringing online communities to people who are immobile or lacking in treatment access so they can still benefit from peer connections. Behavioral health treatment providers can utilize PatientsLikeMe in their clinical work at no cost to have patients: (1) track their outcomes; (2) learn more about their treatments (psychotherapies, medication) and how to maximize their effectiveness; and (3) supplement treatment interventions with “real world” daily coping strategies shared by other patients with psychiatric and substance use conditions.

Results/Outcomes

Our members have generated more than 43 million data points about disease, creating one of the largest repositories of patient-reported, cross-condition data. Their data have helped our researchers to model multiple diseases, validate quality measures, understand medication adherence, and validate patient-reported outcomes. Our depression research has identified: (1) symptoms that patients want most treated and find most difficult to treat, (2) their treatment journeys with treatment-resistant depression, (3) their experiences with cognitive and sexual dysfunction; and (4) gaps in how they set goals in depression treatment. We have conducted surveys on perceptions of different treatment modalities by PTSD patients, as well as found the positive impact of PatientsLikeMe on patient self-management and self-efficacy. Most important, we share our findings – we provide research “givebacks” (summaries) that patients can use in their lives. We publish these findings in open access journals and our work has produced over 100 publications (see bibliography).