Health IT

PatientsLikeMe opens health outcomes measurement hub for researcher-patient collaboration

As part of its efforts to give patients a stronger voice in clinical trial design, PatientsLikeMe has opened up a hub where researchers, clinicians, academics and patients can refine and maybe redefine outcomes that reflect the patient’s experience of a disease. The idea is to assess health and quality of life in ways that are […]

As part of its efforts to give patients a stronger voice in clinical trial design, PatientsLikeMe has opened up a hub where researchers, clinicians, academics and patients can refine and maybe redefine outcomes that reflect the patient’s experience of a disease. The idea is to assess health and quality of life in ways that are meaningful to patients, not just clinicians and researchers.

The Open Research Exchange is currently looking for researchers to use the hub. It’s also named members of a scientific advisory board for the OpenDNS site.

PatientsLikeMe developed the hub with backing from the Robert Wood Johnson Foundation, which provided a $1.9 million grant. It reflects a view in the patient-centered care movement that the way the U.S. Food and Drug Administration and drug developers in particular define a successful drug is not necessarily the same as how a patient taking that medication would define it.

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Jamie Heywood, co-founder of Cambridge, Massachusetts-based PatientsLikeMe, said at the time of that announcement: “If we can develop a measurement system that is openly shared and centered on the patient, we will move our knowledge forward and bring medicine to a new and important level.”

Researchers have free access to the platform and in exchange, data indicating the validity and performance of their products will be publicly available on the website, according to a page detailing how the hub works. It will function like an open-source platform in that health outcome measures developed in the hub will be licensed under terms that allow others to use and extend them at no cost.

PatientsLikeMe is an online patient community to help patients connect with each other as well as giving access to treatment and outcomes reports. It’s has been successful at attracting a combination of Big Pharma companies such as Merck and Sanofi, and at least one payer — Aetna.