Applied Informatics use social media like Twitter to enhance patient recruitment for medical trials
This article appeared in eCliniqua, an ePublication that reports on the medical trial process. I thought Inconvenient Woman readers would find it a helpful research resource. eCliniqua is a great publication for those who wish to follow the trial design process, and the regulatory considerations of a well-designed medical trial. The publication archive and resource sections are particularly helpful.
I’m new to Twitter technology. I have to admit when it first came out, I didn’t understand the power of the tool. I find it telling that Big Pharma and the related medical-industry pilot fish were early adapters. It will be interesting to follow companies like Applied Informatics as it moves patient recruitment for clinical trials onto social media sites like Twitter.
By Deb Borfitz
Yet another patient recruitment tool has just been released by New York-based Applied Informatics. But this one is a “do-it-yourself” platform that moves the search for clinical trials onto social media sites like Twitter. It also allows would-be subjects with a personal health record (PHR) in Microsoft HealthVault or Google Health to import the information in lieu of filling out an online pre-screening form to be matched for trials.
“Eighty percent of consumers who are online are searching for health information,” says Sharib Khan, co-founder of the new TrialX platform. As many as two million of them are looking specifically for clinical trials or new disease treatments. They frequently discover sites like ClinicalTrials.gov, the massive registry of the NIH, but can quickly get overwhelmed trying to sort through the listings to find a few potentially suitable trials.
As an alternative, they can now send a QuTweet (request) to TrialX from their Twitter account and within minutes receive a targeted response with a URL link to a list of trials appropriate to their query, says Khan. Once there, visitors can further refine the list by inputting or importing information from their PHR inclusive of their age, gender, location, and medical condition. With one or two clicks, they can also email the investigator to learn more about the trial or schedule a screening visit.
TrialX is likewise designed to “empower” investigators who lack the budget for newspaper and radio ad campaigns, the time to field a lot of “false positive” calls, and the know-how to develop their own trials website, says Khan. TrialX gives them a single place to create a profile of their site and trials, receive legitimate leads, communicate directly with those prospects, and get performance reports on the resulting activity – all for between $99 and $299 per month per trial. The fee excludes marketing of their trials on Google, triggered by specific keyword searches, which can cost as little as $1 a day.
According to the 2009 Deloitte Survey of Health Care Consumers, only about 9% of people today have an electronic PHR but 42% are interested in establishing one. So TrialX leverages an emerging technology to make the search for trials a more consumer-centric endeavor. Trials have a lot of complex qualifying criteria which, without an importable PHR, put the onus on patients to understand and remember the particulars of their condition or medications they’re taking, says Khan.
Admittedly, many people—including about three-quarters of all cancer patients—don’t know enough about trials to even be searching for one, says Khan. To help address the information gap, TrialX has a few community features that were first previewed at a Health 2.0 Conference in Boston last week. Patients can now go to TrialX to ask questions about clinical trials in general or a specific trial. Starting next week, those who have participated in a trial can also share their experience at the site.
Meanwhile, partnerships are being established with several “top-name” hospitals that will apply a customized version of TrialX to trials happening on their campus, says Khan. Disease-specific web sites, most immediately one devoted to rare medical conditions, are likewise expected to partner with TrialX to display a subset of trials. Applied Informatics was also recently invited to build TrialX on top of the PHR platform of Indivo, heretofore unavailable to external systems.
Although TrialX has yet to be formally marketed, each day it is receiving hundreds of unique visits and an exchange of three to four dozen emails between investigators and patients, says Khan. It has matched a “few thousand” users to trials since its beta launch last October. In the near future, TrialX will start tracking how many of those matches translate into enrolled patient.