Researchers Fret as Social Media Lift Veil on Drug Trials

Drug makers and researchers are increasingly concerned that online chatter could unravel the carefully built construct of the clinical trial, and perhaps put patients in danger. They worry that patients may drop out if they suspect they aren't getting the drug being tested, or may report symptoms inaccurately because of the influence or suggestions of others in the trial.

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Originally published in The Wall Street Journal

#trial: clinical research in the age of social media

Research programmes, data analysis, and conduct of clinical trials have traditionally been the preserve of clinicians and researchers. Now, however, social media and crowdsourcing are becoming ever present and widely used. For example,Crowdsourcing Cancer Research: The Role of Quantitative Challenges was a recent topic at the American Association for Cancer Research annual meeting in San Diego on April 7, 2014. Indeed, social media is empowering patients in ways that are changing how clinical research is done, but are these changes beneficial or do they undermine integrity?

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Originally published in The Lancet Oncology. 

Straight talk with...Jamie Heywood

Last month, Genentech launched an unusual five-year research pact. The San Francisco subsidiary of the drug giant Roche partnered with Cambridge, Massachusetts–based PatientsLikeMe to mine the online patient network's database of real-world experiences. In exchange for an undisclosed fee, Genentech now has access to nearly all of the information collected by PatientsLikeMe, which currently includes more than 250,000 members with 2,000 different conditions. The hope is that studying the network will help Genentech learn how to stratify patient populations more precisely and measure drug effectiveness better, among other things.

At the helm of PatientsLikeMe is Jamie Heywood, a mechanical engineer by training who devised the idea for the platform ten years ago when he noticed some striking similarities between the information asked of online dating websites and clinical trial portals. With his brother Benjamin and friend Jeff Cole, Heywood founded PatientsLikeMe later that same year. Nicholette Zeliadt spoke to Heywood about where the crowdsourcing site stands a decade on from its inception and what this new partnership with Genentech will mean for open-participation research.

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Originally published in Nature Medicine

How Can Research Keep Up With eHealth? Ten Strategies for Increasing the Timeliness and Usefulness of eHealth Research

Background: eHealth interventions appear and change so quickly that they challenge the way we conduct research. By the time a randomized trial of a new intervention is published, technological improvements and clinical discoveries may make the intervention dated and unappealing. This and the spate of health-related apps and websites may lead consumers, patients, and caregivers to use interventions that lack evidence of efficacy.

Objective: This paper aims to offer strategies for increasing the speed and usefulness of eHealth research.

Methods: The paper describes two types of strategies based on the authors’ own research and the research literature: those that improve the efficiency of eHealth research, and those that improve its quality.

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Article originally published on The Journal of Medical Internet Research

Engage with research participants about social media

A growing number of participants in clinical trials are sharing information about their health online. It's time that the drug development community starts to examine how this social media use might compromise the integrity of research studies and how it might also offer new opportunities.

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Article originally published in Nature Medicine.