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Patients may soon be getting more of a say in how health outcomes are measured, as the Robert Wood Johnson Foundation (RWJF) has awarded PatientsLikeMe a $1.9m grant to create an open-participation research platform geared towards developing patient-centred outcome measures.

By Ben Steele on Feb 27, 2013

Health outcomes are usually developed by clinicians and researchers, without input from patients, but with help from the PatientsLikeMe patient network, comprising nearly 200,000 patients representing more than 1,500 diseases, researchers will be able to develop measures that take into account patients’ own experiences and what matters most to them about their health. Through the platform researchers will be able to recruit patients to their studies, track the success of newly developed measurements, and gain feedback from patients to verify that the measurements are relevant to their experience of the disease. Access to the platform will be free, and all instruments and items developed on the platform will be made openly available for free, unlimited use.

The Robert Wood Johnson Foundation is the largest U.S philanthropic organization devoted exclusively to health and health care: its mission is to “confront the most pressing health and healthcare problems affecting our society.” Brian Quinn, team director of RJWF’s Pioneer Portfolio in charge of the funding for the project described it as an “exciting” opportunity which focuses on “data that is developed by patients in the real world, where they spend most of their time, as opposed to in controlled clinical settings. We believe it has the potential to help researchers better understand the course of disease and open up important paths for the development of new therapies. We’re eager to see what medical revelations will emerge when researchers focus first on patients’ needs and concerns, and openly collaborate with patients and each other.”

PatientsLikeMe is a health data-sharing platform that aims to transform the way patients manage their own conditions, by providing a space for patients to form communities and share their experiences with others, and by making insights from these conversations available to researchers, pharmacos, regulators and providers in order to help them improve their services. One example of this is Merck’s collaboration with the patient community for psoriasis on PatientsLikeMe, with the aim of using patients’ insight into their conditions to create better psoriasis medication.

Speaking about the recent grant from RJWF, Jamie Heywood, co-founder and chairman of PatientsLikeMe, remarked that “measurement is the basis of knowledge. For too long, there have been restrictions placed by copyright and weak and out-of-date tools to measure a patient’s experience with disease. Patients, researchers, and clinicians working together to iterate and learn about the holistic journey of each condition and health itself is a critical step toward transforming care and discovery so that they truly serve the patient.”