PatientsLikeMe: Outcome Measures About to Get Crowdsourced

By Deborah Borfitz 

February 25, 2013 | Thanks to a $1.9 million grant from the Robert Wood Johnson Foundation, PatientsLikeMe will lead development of truly “patient-centered” health outcome measures via the world’s first open-participation research platform. Never before have crowdsourcing approaches to authoring, reviewing, and validating outcome measures been attempted on a single system, says Jamie Heywood, co-founder and chairman of the nearly 200,000-member patient network.

The news broke this morning in a presentation at TED2013 by Paul Wicks, PatientsLikeMe’s research director and a new TED fellow. It marks the fourth TED Talk by the data-sharing social network, with a fifth scheduled in April.

Jamie Heywood

The “vast majority” of health outcomes are currently built to measure a single, quantifiable result across a population of patients, Heywood tells Bio-IT World. Almost none purposefully reflect patients’ experiences with a disease or assess health and quality of life in ways that matter to patients. The commonly used Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS)—measuring patients’ ability to breathe, walk, and use their limbs—is a rare and perhaps accidental exception, he says.

Standard outcome measures used for Parkinson’s disease, multiple sclerosis (MS), depression, and pain “aren’t very meaningful to patients,” says Heywood. Even the ubiquitous EQ-5D questionnaire, while useful in comparing the impact of different treatments on patients’ “quality of life years,” is irrelevant to real-world patients.

As contributors to the new open research platform, both PatientsLikeMe members and researchers’ own database of patients will soon gain a say-so in the outcome measures that get adopted, says Heywood. Perhaps 1 in 1000 of them will opt to “help author a better instrument.” An expected 1 in 100 will qualitatively and quantitatively “peer review” proposed measures. Another 10%-50% are likely to contribute data providing statistical validation of the measures.

This revolutionary outcomes-building process is not being done under the guise of a “study,” says Heywood, but as a logical albeit long-absent part of the business of making medicines. Developing more appropriate outcome measures shortens the often lengthy time it takes drug developers to evaluate the efficacy of their therapies.

As Heywood explains, the new web-based research platform consists of a database of measures and instruments, an interface for would-be authors, a community for communication and collaboration, and a tool providing access to the PatientsLikeMe database for the purpose of validating measures. The crowd system combined the “best elements” of Wikipedia, crowdsourcing website Quora, and Yahoo Answers, he says, and will work on mobile devices. A beta version of the platform will be unveiled soon.

It remains to be seen precisely how the platform’s other intended users—professional organizations, patient-reported outcome specialists, funders, and academic researchers—will participate in the initiative and opt to collaborate with one another, says Heywood. What’s clear is that the measures sought are to be longitudinally valid as well as expressive of patients’ individual differences.

Significantly, no copyrighting and profiteering is allowed, says Heywood. No one is permitted to charge a user fee for any outcome measurement tool developed using the crowdsourcing platform. Measures can thus freely evolve based on ongoing input from patients and their representatives. This is a “big change,” which Heywood readily admits will meet with resistance from established toolmakers.

Many research funders, most immediately disease-specific non-profit organizations, will want to underwrite development of disease severity and impact indexes using the open-participation platform in lieu of academic channels with their restrictive, intellectual property-protected methodologies, says Heywood.

Once the platform is built, its operational cost will be minimal, says Heywood. “Since we’re committed to the development of measures, and they’re hard to develop internally, it makes sense for us to [indefinitely] maintain the environment.” The long-term plan of PatientsLikeMe is to help the pharmaceutical industry develop a “global integrated [patient] registry across diseases,” necessitating “robust [health outcome] measures.”

PatientsLikeMe presently sells knowledge of the real-world experience of patients based on a combination of measures over time, as well as predictive computational outcome models for MS and ALS patients. Its customers include more than a dozen pharmaceutical companies with therapies targeting MS, ALS, transplants, epilepsy, and psoriasis.

When people ask Heywood why PatientsLikeMe works with the pharmaceutical industry, he’s quick to point out that it’s the only player in the entire health care sector that’s incentivized to measure how effective the remedies it offers actually work.