PatientsLikeMe Receives a $1.9 Million Grant from Robert Wood Johnson Foundation

Optimized-questionnaireBig Data is discussed by many organizations as necessary in achieving a smarter health care system than the one we have now. At the same time, others are looking for ways to bolster the effects of Small Data, which are basically data that can be obtained without a supercomputer.

Under the category of Small Data falls the kind that are patient-reported through questionnaires or interviews. These responses can tell an individual organization a lot about the effectiveness of the care they are giving, and at a broader level they can reveal how well specific treatments are working within a disease community. While patient-reported outcome surveys essentially ask a patient how he or she feels, delivering the question in a way that yields useful answers isn’t something that’s done very well right now.

Health care philanthropy organization Robert Wood Johnson Foundation just announced that it awarded online patient network PatientsLikeMe a $1.9 million grant to work on this problem. The grant will be used to develop a platform that invites patients, researchers, pharmaceutical companies and others to collaboratively develop health outcome measures. PatientsLikeMe’s Research Director Paul Wicks, Ph.D., presented the new initiative today at TED2013.

Many think of the EQ-5D measure when they think of patient reported outcomes. While EQ-5D is an effective tool for gauging health outcomes at the population level, it doesn’t tell someone much about themselves.

“No individual patient has said, ‘You know I really need to get my EQ-5D up to 80,’” Co-Founder of PatientsLikeMe Jamie Heywood said. “A good test for whether or an instrument is relevant is would someone feel like their condition was captured and measured in a way that they would want to improve it in that scale? And almost all of them fail on that index with very few exceptions.”

The goal of this project is to develop measures that are tailored to specific conditions. They’ll be developed in three stages during which members of PatientsLikeMe will be able to contribute. First, they can participate in drafting and authoring the measures. Next, they’ll be able to review, evaluate and provide feedback on whether or not the measures are meaningful to them. And lastly, during the validation stage, the measures will be deployed.

For years PatientsLikeMe has identified the flaws in measurement taking as a barrier to the company’s success. Both it and RWJF are set on making the crowd-sourced measures available as open public resources to help other organizations that face the same hurdle. Right now PatientsLikeMe is talking with nonprofit companies and pharmaceutical companies about piloting the platform during the development process.

Heywood said he realizes the value of standardizing outcome measures isn’t immediately obvious. That’s because many incorrectly think that it’s been happening behind the scenes all along. “Most people in most industries can’t believe that medicine has operated for so long without measuring its productivity or effectiveness,” Heywood said.

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