PatientsLikeMe Research

PatientsLikeMe is a clinical research platform that provides real-world, real-time insight into thousands of diseases and conditions. Our members have generated more than 43 million data points about disease, creating one of the largest repositories of patient-reported, cross-condition data available today. Their data have helped our researchers to refute traditional randomized clinical trials, model multiple diseases, validate quality measures, shed new light on medication adherence, and add and validate patient reported outcomes. They have also been used with clinicians to illuminate the patient journey, and played a pivotal role in research partnerships with the world’s top pharmaceutical companies, federal regulatory agencies, research institutions and nonprofit organizations.

Completed with Funding from RWJF

RWJF funded PatientsLikeMe research to capture patient perspectives about and develop new ways to measure provider effectiveness in delivering health care. Previous studies on the same topic have relied on clinical and researcher input with little patient involvement. This research included several components: one study applied patient-generated health data to groups developing outcome measures; another developed a patient-generated model of good care; a third compared physician and patient perspectives on accountability. Collectively, these studies help us to understand and define good care from the patient point of view. Following are all the reports, posters and videos related to the research.

Developing Patient Reported Outcome Measures Relevant and Meaningful to Patients
(RWJF Grant 73040)

Featured Research

  • 07/25/2018

    Patient and public involvement in research is becoming a mainstream activity thanks to recognition by everyone in the research process from funders and regulators to conference organizers and publishers that it helps them do a better job. There is certainly a strong case for increasing the value to patients and the public from the billions spent on biomedical research. The exponential rise in research output has seen a decline in quality and mounting concern about high levels of waste, bias, inefficiency, and error.

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  • 07/14/2017

    NMO (also known as Devic’s disease) is a rare disorder once thought to be a variant of multiple sclerosis (MS). In this paper we describe the patient experience of living with NMO based on data from our community on PatientsLikeMe. Median delay from symptom onset to diagnosis was about a year, with the three most frequently reported symptoms being fatigue, pain, and stiffness/spasticity. Relative to MS patients, NMO patients had more vision problem and fewer cognitive problems.

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  • 06/06/2017

    This paper describes the development of the Patient and Caregiver Journey Framework and related patient-informed principles for design and measurement created by PatientsLikeMe in partnership with patients and caregivers using qualitative research methods, immersive observation and directed one-on-one conversations. These tools provide a person-centric foundation upon which the knowledge and experience of patients and caregivers are collected, curated, aggregated and shared to support a data-driven learning health community continuously powered by the people and for the people.

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