PatientsLikeMe offers a new approach to viewing your own health information, called DigitalMe. DigitalMe combines Biological, Experiential, Medical & Environmental data to create a profile of an individual, which is then aggregated with other ‘little data’ about other individuals into ‘big data’ sets. By contributing data, patients hope to receive meaningful feedback on opportunities to better treat or manage their own condition at the same time as helping others.
PatientsLikeMe provides value in a number of different ways and makes money via their partnership with companies who aim to sell products to patients. Operating in a not-just-for-profit model, with particular emphasis of use of ‘data for good,’ they attract people around a shared purpose of better health care. PatientsLikeMe convenes a couple of key groups:
Share, find and learn: patients can share about their experiences, as well as submit quantified medical data (like health records), biological data (like blood samples) and data about their environment. Currently, PatientsLikeMe says they have over 600,000 members reporting on 2,800+ conditions. Patients have the opportunity to interact with others with the same condition to directly share experiences and data, and can also seek research/clinical trials.
PatientsLikeMe partners with “companies that are developing or selling products to patients.” According to the company, these products may include drugs, devices, equipment, insurance, and medical services, with the aim to improve health care. One such partnership was with Walgreens.com, where they cross-referenced their data with Walgreens’ drug data.
Clinicians are perhaps less-represented on PatientsLikeMe outside of the context of research. There may be opportunities to further that integration for care programs, much in the same way that Apple’s CareKit clinician-liaison infrastructure emerged from ResearchKit, their research-liaison framework.
Researchers can apply for access to data about their members of PatientsLikeMe, and can partner with PatientsLikeMe to conduct tests, as they did in a trial with The Duke ALS Clinic.
It is not entirely clear from reviewing PatientsLikeMe’s materials is the degree of integration they offer to third parties. For example, is it possible to easily integrate their data with Apple's HealthKit and CareKit, from the patient and medical professional’s perspectives? Can research projects integrate with Flatiron Health’s approach to large-patient-base research projects, or Apple’s ResearchKit framework for opt-in medical studies? The company indicates that it is ‘in trials’ of integrations with wearable technology devices (presumably like Apple Watch, Fitbit or Android Wear devices). They also indicate pilots of electronic medical record integration.
- More than 600,000 people use PatientsLikeMe to find new options for treatments, connect with others, and take action to improve their outcomes.
PatientsLikeMe named one of Fast Company's Top 10 Most Innovative Companies in Biotech.
PatientsLikeMe partners with Jun Wang's iCarbonX to apply next generation biological measures and machine learning, and accelerate a deeper understanding of the basis of human health and disease.
- PatientsLikeMe expands the scope of patient-generated information it offers through Walgreens.com to help more people better understand how certain prescription medications may affect them.
In the first-ever ALS virtual trial, PatientsLikeMe and The Duke ALS Clinic evaluate the potential of Lunasin, a soy peptide, to reverse symptoms in ALS patients.
PatientsLikeMe announces a collaboration with M2Gen to give patients and researchers a more complete picture of patients’ experiences with cancer treatments and to shed new light on the factors that may affect outcomes and quality of life.
Datasets at PatientsLikeMe tend to be focused on complex conditions and include many factors. This can be a boon to researchers looking to attend to environmental and social factors affecting research participants, but can also be challenging to ‘control’ for in a study.
PatientsLikeMe stands to bridge the genomic testing science of groups like HudsonAlpha with the community elements of CaringBridge. It’ll be interesting to see where this goes. The angle PatientsLikeMe takes is more akin to sickness care—their videos and on-site materials focus on people grappling with significant conditions, like post-traumatic stress disorder, multiple sclerosis, fibromyalgia or massive depressive episodes. However, since many people may not find a need for this service until a serious condition enters their life or that of a loved one, it makes sense as a starting point. The promise of the platform is huge, though—and when combined with other platforms, it could provide exponential value to patients, clinicians, researchers and medical organizations.
Okun S, Goodwin K. Building a learning health community: By the people, for the people. Learn Health Sys. 2017;1:e10028. https://doi.org/10.1002/lrh2.10028