Technology vendors have been vying to build a better website for drawing people into clinical trials. Ron Walters, MD, associate vice president of medical operations and informatics at Houston’s
MD Anderson Cancer Center, has fielded no fewer than 10 such pitches in recent years.
These public-facing services attempt to match people to trials based on information they self-disclose via an online profile. NexCura does its matchmaking with literally hundreds of thousands of newly diagnosed patients who register at its website for access to scientifically vetted information about their treatment options.
But to date, not a single vendor has convinced Walters that it could do a better job than MD Anderson is already doing with its homebuilt website, which has separate sections for information-seeking patients and physicians. For the past three years, referring physicians have been using the site to learn about the availability of clinical trials for their patients and, if need be, get linked to a study coordinator or research nurse to ask protocol-specific questions, says Walters.
The Head and Neck Center at MD Anderson has gone one step further by developing a therapeutically specific database of patients screened for trials as they walk through the door, says Alan Powell, director of internet service. “We’re interested in taking that idea and extending it out beyond our boundaries to referring physicians…who might want to recommend a patient for a trial.”
With patients, “peer-to-peer communities” can be particularly persuasive, says Powell. A cancer survivor and former clinical trial participant periodically hosts webcasts and podcasts of patient stories in which clinical trials figure prominently. Anecdotally, the impact on recruitment has been significant. “Patients say they are glad to hear from someone who has actually been through this.”
Finding medical information online, generally, can be a nightmare, says Walters. “If you want to know about the latest treatments or where to go for care, the [Web] isn’t terribly helpful. So people Google a term like ‘arthritis’ or ‘cancer,’ get a million hits, and…somehow make a decision.”
One of the chief problems of any online information system for patient recruitment is maintenance, since “clinical trials open and close a lot,” says Walters. That’s especially true when databases have multiple contributors. “Patients go to places like Clinicaltrials.gov and get interested in a trial. But when they call about it, they’re told the trial has been closed for a month. That makes for a frustrating situation if you have cancer and are looking for options.”
Even MD Anderson does a less-than-perfect job at keeping trial listings up-to-date on its website, says Walters. “It takes time to get information on [IRB-approved] trials out to the public. And when a trial is full, it takes time to get it de-listed. That’s the part that no one has really perfected and that’s all patients care about.”
Technology, by itself or bundled with an improved communication approach, will ultimately need to address the twin challenges of awareness -- and misgivings – about clinical trials, says Powell. “Most people are resistant to the idea of participating in a clinical trial unless they think it will offer them a better chance of a successful outcome or they’re in a situation where there’s not much hope and altruistically would like to help others.”
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