In a move that could impact clinical trial design, PatientsLikeMe has received a $1.9 million grant from the Robert Wood Johnson Foundation to set up an open-source platform to measure health outcomes for medical conditions that reflect patients’ experiences with a disease and would be available to researchers.
Jamie Heywood, co-founder of PatientsLikeMe, said in a statement: “We want to reverse the system so that the outcome becomes the measure of medicine. 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 will be able to track the progress of newly developed measurements and export data for analysis, according to a statement from the company.
In an interview with Robert Wood Johnson Foundation program officer, Paul Tarini, Heywood said:
“What is novel about patient-reported outcomes is we are harnessing the best ideas for measuring each condition through a crowdsourcing, open-source approach. This will dramatically accelerate our understanding of human health. If we can create a shared partnership with patients and researchers, it will break down a lot of silos, barriers and cost inefficiencies so we can improve and increasingly use outcome measures as a de-facto practice. … The validity of outcome measures is ultimately driven by their utility to patients, which is a very different concept from the way things work now. This is a disruptive shift.”
The move by Robert Wood Johnson Foundation to give PatientsLikeMe the grant reflects a push back in the e-patient community that how a drug developer, and the U.S. Food and Drug Administration for that matter, defines a successful drug is not necessarily the same as a patient taking that medication. It also reflects a desire for greater transparency for Big Pharma companies.
PatientsLikeMe’s influence has been steadily growing since it was started in 2004 in Cambridge, Massachusetts, by a group of MIT engineers. Merck and the healthcare social network started a collaboration last year to measure the impact of psoriasis on patients and develop ways to improve outcomes.
Payers and providers are also beginning to see the value of healthcare social networks to improve adherence to treatment regimens, particularly for patients with chronic conditions, because they provide interaction between people with similar conditions and help patient engagement. Earlier this month, Aetna agreed to a one-year pilot program with PatientsLikeMe in which its members would be directed to the site and in exchange, the payer would receive de-identified data on how its members use the site.