hivandhepatitis.com

Counting Your Chickens: Reliance on Unreliable Information about Medical Studies

Over the years, medical news coming from major media outlets and the Internet has not always been reliable. Some reports have ranged from completely inaccurate to skewed to the point of being crazy. And today, many people post and re-post misleading news until it goes viral, spreading false information around the globe.

The general public often falls for these news items because they do not take the time to read -- or do not have access to -- the full report, or do not dig into complex data they may not understand.

There are many reasons for this misinformation to come across. Drug companies that are promoting their products may make exaggerated or false claims, which in the worse cases may end up in court. Research groups and university press offices may skew their findings or select data that shines the brightest light on their studies.

Journalists, especially those who do not have the experience or expertise to understand the totality of medical information, may report findings incorrectly or incompletely, and editors may select eye-catching headlines that do not accurately reflect an article's content.

Unfortunately, when these reports present information in a more positive light than it warrants, they can provide false hope to patients, and they are irresponsible to the public and to scientific ethics in general.

Granted, medical information is not always easy to understand or to translate for readers who may not hold scientific degrees. But many stories leave out important data that may not be positive or is less than exciting. Writers may "cherry-pick" the best or most dramatic data, making the overall picture look brighter and sometimes completely overstating the facts. They may use the most "sexy" vocabulary in order to market their information. Stories may present a best-case scenario, making predictions with little or no evidence using words like “promising” and “in the future.”

HIV Vaccine Studies

Recently a few new HIV vaccine candidates have not escaped inaccuracies or wild claims.

In September of last year, the Spanish Superior Scientific Research Council issued a press release about a small Phase 1 vaccine trial with 30 volunteers. As Richard Jeffreys of the Treatment Action Group writes in the Michael Palm HIV Basic Science, Vaccines and Prevention Project Weblog, “…the press release went a little overboard in attempting to sell the results to the media, triggering some of the most woefully misleading and erroneous coverage of HIV vaccine research in recent memory.” He contends that the data are cherry-picked and the release makes implausible claims, in part due to translation inaccuracies.

Another report, in December, stated that a Canadian whole-killed HIV vaccine has just been cleared for human trials, yet claimed it “…has the potential to save the lives of millions of people around the world by preventing HIV infection.” A lot of things have potential, but clearly they are counting chickens before they are hatched. Readers who do not know any better will focus on these powerful words instead of the much more modest reality.

Check It Out

If you are unsure about a report's claims, there are a few things you can check out. First, who has written or released the information? Is it from a drug company, a public relations entity, a disease-specific organization, or a reputable news source? Is the story based on peer-reviewed research? How recent is it? Does the report make any promises or claims? Does it contradict other related reports you may have read or heard about?

Does the information sound exaggerated or too good to be true? Does the report make bold claims when a product has only been studied in animals or in a few people? Are the data from a small, selected subset of participants or the trial as a whole?

Does the report specify whether the findings are statistically significant? Does it describe findings in relative or absolute terms (a 50% risk reduction sounds more exciting than a reduction from 4 to 2 cases in a large population). Have you read the "fine print" or the original data reported in a peer-reviewed journal?

Ask people you trust -- like your medical providers -- whether they can verify the information. AIDS treatment and prevention activists and community advocacy organizations can be a great source for verifying information about HIV research.

Don’t take medical information for granted just because you saw it on Facebook, heard it on cable news, or read it in a newspaper. Take the time to do a little homework before you take claims too seriously. Be skeptical -- there's a world wide web of deceit out there.

1/10/12

Matt Sharp is an independent HIV education and advocacy consultant based in San Francisco.