Online data-sharing platform
PatientsLikeMe allows members to input real-world data on their conditions, treatment history, side effects, hospitalizations, symptoms, disease-specific functional scores, weight, mood, quality of life, and more on an ongoing basis. The result is a detailed longitudinal record – organized into charts and graphs – that allows patients to gain insight and identify patterns. The data-sharing platform is designed 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?" Answers come in the form of shared longitudinal data from other patients with the same condition(s), thus allowing members to place their experiences in context and see what treatments have helped other patients like them. Some communities, such as ALS, feature visual aids such as percentile curves on the patient profile, so that an individual user can see whether their rate of progression is fast, slow, or about average. A seizure tracker for patients with epilepsy helps identify triggers such as missed medication doses, sleep deprivation, or alcohol use, and a "mood map" for patients with mood disorders helps to show different factors underlying their condition such as emotional control, anxiety, or external stress while all users can look for patterns in their daily health status such as day of the week or time of day. On top of patients being able to organize their treatment, better understand and control their disease, they can access a beneficial psycho-social support network. Patients can share with their peers who have had or are going through similar experiences. Diagnosis of a long-term illness can be socially isolating as the patient is usually the only one in their family or friend group going through it. There is an experience gap between people who are diagnosed with cancer (or other long-term illness) and the ones who are not. Being social animals, this isolation often leads to anxiety and depression (related to diagnosis) which are known to undermine treatment and patient outcomes. On relation to various cancers, peer support groups of "others who have had the same or similar experiences" have been linked to reduced symptoms of depression, increase patient compliance to treatment regimens, and increased survival outcomes.
Three studies have been published suggesting that use of the platform improves patient outcomes. A survey conducted in 2010 amongst patients with ALS, MS, Parkinson's disease, HIV, fibromyalgia, and mood disorders found that 72% of users had found the site helpful in learning about a symptom they had experienced, 57% for understanding the side effects of a treatment, 42% in helping them to find another patient like them, amongst others. A second study conducted in epilepsy found that in addition to the earlier benefits reported, patients with epilepsy reported a better understanding of their symptoms (59%), seizures (58%), and symptoms or treatments (55%). The number of benefits they reported from using the site was strongly associated with the number of social connections they made with other members, dubbed the "dose effect curve of friendship". Finally, a third study conducted with the U.S. Department of Veteran Affairs and the University of California at San Francisco reported statistically significant improvements in validated measures of self-management and self-efficacy in veterans with epilepsy as a result of engaging with the site for a period of six weeks.
In 2023, the Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital collaborated with PatientsLikeMe to use the ALS data from the database to expand their Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database. The PLM database includes information such as symptom reports from ALS patients that add data to the clinical trial.
Health economics and outcomes research
The site makes revenue by conducting scientific research studies for pharmaceutical companies, typically with an emphasis on issues that are important to both patients and industry. In 2011, a partnership with Novartis studied the barriers faced by people with multiple sclerosis in being adherent to taking their medication, which led to the development of an MS Treatment Adherence Questionnaire (MS-TAQ) which was made available to help patients and their doctors identify and address these issues through coping strategies and enhanced communication.
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A 2013 collaboration with UCB explored factors underlying quality of life in epilepsy and identified a number of issues beyond the occurrence of seizures as being important, including symptoms such as problems concentrating, depression, memory problems, and treatment side effects.
In 2015, PatientsLikeMe worked with researchers at Genentech on a study inviting potential clinical trial participants to review study protocols in order to provide input and feedback to make the study more appealing.
A 2016 collaboration with Novartis published in Nature Biotechnology and Value in Health explored ways in which patients could provide systematic input into guiding drug development to help make it more patient-centered. A different study published with AstraZeneca in 2016 sought to understand the treatment expectations of women living with ovarian cancer and identified a shift from surviving with the condition to living with it. Such research helps to improve understanding of disease, identify new approaches to management, and generate ideas to improve the products and services developed by pharmaceutical companies.
Open Research Exchange
Following the award in 2013 and 2014 of $4.5m in grants from the Robert Wood Johnson Foundation, the company developed an online tool called the Open Research Exchange (ORE) that allowed for the rapid creation, prototyping, testing, and validation of patient reported outcome measures, questionnaires that can establish the impact of symptoms and disease on patients. During the period of the grant, a number of academic collaborators were invited to develop measures on the platform including measures of treatment burden, hypertension management, feelings of satiety in diabetes and treatment burden in chronic illness. The tool offers researchers the ability to rapidly get input from large numbers of patients in a matter of weeks or months as opposed to much slower forms of research which can take years to complete. A number of tools such as the Treatment Burden Questionnaire and the Suicide Ideation and Behavior Assessment Tool (SIBAT) have been published in the scientific literature for use by researchers and an editorial co-authored with industry leaders and a researcher at the FDA outlined ways in which PROs developed on the ORE could be used for the development of new medicines. In addition to the traditional scientist-lead instruments, one instrument was developed by a person living with MS. A 2016 RWJF grant for $900,000 charters PatientsLikeMe to work with the National Quality Forum to develop new measures for healthcare performance.
