Issue Background

Nearly a decade ago, the Institute of Medicine designated the concept of patient-centeredness as one of its six primary goals for a 21st century health system. When the Affordable Care Act (ACA) passed in 2010, its repeated references to patient satisfaction, engagement, and shared decision-making cemented the idea of patient-centered care as a key component in the delivery of quality health care. Patient-centered care is particularly relevant for people diagnosed with complex and chronic illnesses that may require particularly significant investments of time and effort, outside of the clinician's office, on the patient's part.1 These patients may have many symptoms, triggering behaviors that cause those symptoms, and general quality-of-life questions about daily life with their disease. For these patients, access to information about their disease can be a crucial factor in improving patient experience. Positive results from PatientsLikeMe demonstrate the strong potential of this type of social network to improve patient engagement and disease management for patients with life-changing illnesses.

About PatientsLikeMe

In 2004, PatientsLikeMe was founded by the brothers of Stephen Heywood, a 29-year-old architect with amyotrophic lateral sclerosis (ALS). A frequent frustration of people with chronic conditions and their families is the lack of publicly available answers to seemingly simple and rote questions about these chronic conditions. To overcome this, Stephen's brothers and a family friend created an online community where patients, doctors, and organizations could work together to easily and quickly share disease information.2

PatientsLikeMe has grown into a thriving online patient community that leverages social networking among people diagnosed with chronic, life-changing illnesses to generate a unique repository of patient-produced data. The network's corporate partners use this data for clinical research and to guide measure development. Because the network is an opt-in service, not a health plan, provider, or business associate, HIPAA privacy rules do no apply to the site's user health profiles—through which individual members track how they're doing between doctor and hospital visits, log their symptoms, identify triggering behaviors, and note their response to new treatments. De-identified, summarized, quantitative data from each profile then feeds into the aggregated data about disease that new users see when they join the network. Upon entering the site, users can search for a condition or symptom and then see both graphs and text that illustrate the number of PatientsLikeMe network members diagnosed with the given condition, the severity of their symptoms, their preferred treatments and other relevant information. By providing a mechanism for open sharing of information between patients, the network helps people to better understand their own progress and symptoms by contextualizing the aggregate data of others sharing the same experiences.

Although the Web site started as a social network where people could easily crowd-source collective wisdom from other patients also experiencing their disease, it has developed into a uniquely powerful data tool for clinicians and researchers. Site membership was initially restricted to ALS patients and others with neurodegenerative conditions, but it opened to people with all diseases in 2011. By the end of 2014, the network counted more than 325,000 members who have been diagnosed with more than 2,400 conditions and logged more than 27 million data points about disease. Walgreens recently announced that graphs depicting the top patient reported side effect information for more than 5,000 medications and the severity of those side effects will be integrated into all of its own patients' online Health Dashboards.3 PatientsLikeMe regularly sends questionnaires to its members, and encourages patients to quantify side effects like nausea and mood that are not normally captured as numbers in a health record. Specially developed survey tools allow patients to monitor their adherence to a treatment regimen, but the site also scans the thousands of message boards it manages for phrases indicating that a patient is having difficulty managing their care.

The network's newest initiative, which is an open measure development platform being developed in concert with the Robert Wood Johnson Foundation, holds promise for expanding the concept of open communication into measure development. The platform, known as the Open Research Exchange, is a tool for any person or organization looking to develop patient-based outcome measures that better reflect patients' disease experiences and health in ways significant to patients.4 Any measures developed through the platform are published in a library and made freely available to any person measuring and studying the given disease, whether or not they have a personal or organizational connection to PatientsLikeMe. One measure development pilot project on the platform is complete; the measure idea was submitted by a 4-year PatientsLikeMe member with multiple sclerosis who built a new measure that abandons numerical pain scales and instead focuses on the disease's impact on physical activities to help doctors better understand and clearly communicate with patients about pain when there is a disconnect between doctor and patient about even the most basic conceptualization of pain.5 With the assistance of PatientsLikeMe researchers, the measure has been tested on selected groups of the site's members and is in the final stages of development before release to the public.6


A combination of peer-reviewed studies and clinical research show that the open access to information facilitated by the PatientsLikeMe model has strong potential to nurture patient engagement and foster effective communication between patients, doctors, and researchers. A 2010 study published in the Journal of Medical Internet Research illustrated the quantifiable results PatientsLikeMe had on patient engagement and disease management. The authors invited 7,000 PatientsLikeMe members who had been diagnosed with ALS, multiple sclerosis, Parkinson's disease, HIV, fibromyalgia, and mood disorders to participate. Nearly three-quarters of the respondents thought that the greatest benefit to the site was learning more about a system they had experienced, and nearly 60 percent found the site helpful for better understanding their side effects. One-third of patients reported using data from their PatientsLikeMe profile during in-person visits with their health care providers.7

Patients also reported benefits for disease- or condition-specific communities: for example, 41 percent of the HIV patients agreed that they had reduced risky behaviors, and 22 percent of mood disorder patients agreed they needed less inpatient care as a result of using the site. Analysis of the Web access logs showed that the participants who used more features of the site, like posting actively in the online forum, perceived greater benefit. The authors concluded that a substantial proportion of members of PatientsLikeMe experienced benefits from participating in the community.

PatientsLikeMe has also brought the patient voice to comparative-effectiveness research. Following suggestions that lithium carbonate might slow the progression of ALS, PatientsLikeMe users initiated an observational study in which 160 PatientsLikeMe users reported obtaining lithium off-label and tracked their progression using the validated ALS functional rating scale (ALSFRS-R). PatientsLikeMe analyzed their results against a control group of PatientsLikeMe users who were not taking lithium, and found lithium had no effect on ALS disease progression.8 Subsequent randomized control trials confirmed the PatientsLikeMe study findings.9 By engaging patients with serious and unique diseases to assist in the expansion of the data and literature available on their condition, PatientsLikeMe showed the potential for its patient community to contribute to the conversation around rare diseases and treatments.

Alignment to the National Quality Strategy (NQS):

PatientsLikeMe NQS Priorities: Ensuring that each person and  family are engaged as partners in their care. Promoting effective communication and coordination of care.

These efforts:

  • Ensure that each person and family are engaged as partners in their care.
  • Promote effective communication and coordination of care.

Contact Information

PatientsLikeMe is an online platform where patients can share and learn from real-time, outcome-based health data and contribute to the scientific conversation surrounding thousands of diseases. For more information, please visit

8 Wicks P, Massagli M, Frost J, Macedo H, Felzer K, Heywood J. A patient-led trial of lithium in ALS using the internet. Amyotroph Lateral Scler 2008;9:S59.
9 Wicks P., Vaughan T., & Heywood J. (2014). Subjects no more: what happens when trial participants realize they hold the power? BMJ (Clinical Research Ed.), 348(January), g368. doi:10.1136/bmj.g368.

Page last reviewed March 2017
Page originally created November 2016
Internet Citation: PatientsLikeMe. Content last reviewed March 2017. Agency for Healthcare Research and Quality, Rockville, MD.
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