A small California paper has an interesting story about patient recruitment. There’s not much new here for industry insiders. Doctors are quoted bemoaning the shortage of patients eligible and willing to participate in clinical trials.
One new twist is that the physicians interviewed are complaining about HIPAA, the federal privacy law. A quote from the story follows:
Before HIPAA was enacted, Buchanan said, he ran five large studies and had no problems finding as many as 1,000 patients for them. He has run two since then, “and we’ve been as far as 50 percent behind,” he said.
The news media also take a shot to the chin. After journalists report that some drugs don’t work, doctors say, patients are less likely to sign on.
“Often people think they are just being treated as guinea pigs,” said oncologist Robert Figlin, associate director for clinical research at the City of Hope. “The public still does not have a clear understanding that there are many safeguards that institutions like the City of Hope has. Clinical trials are often the very best medication the patient can receive.”
Ok. We just had to take a nice, deep breath. It’s great that the newspaper recorded someone’s criticism of ... the news media. But what’s really underlying the dearth of patients is not HIPAA, or journalistic reports of bad outcomes. It’s just a fundamental gap between a) wanting a drug that works and b) wanting to put one’s own neck at risk in the scientific process. We all want to be able to drive to the pharmacy, pick up a bottle of pills, and get well. Very few of us want to put up with the hassle, intrusion and discomfort of a clinical trial. And so the industry will move more and more trials to less-developed countries. In time, many of the jobs will depart for other shores as well. Educating the public about the difficulty of science is something that is not glamorous or easy. But it could help repair the industry’s image—and help patient recruitment in trials overall.
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