If you’re “of a certain age” and have ever experienced a memory slip—forgotten where you put your keys, blanked on an acquaintance’s name—chances are the chilling thought, “Am I getting Alzheimer’s?” has crossed your mind.
For most people, this fear will fade as quickly as it cropped up. But others may need more reassurance that they aren’t experiencing the initial signs of dementia. Some may even turn to one of the many online evaluations that claim to be able to identify whether a person is developing dementia by asking them to answer a list of questions, or solve a series of puzzles.
“Self-diagnosis behavior in particular is increasingly popular online, and freely accessible quizzes that call themselves ‘tests’ for Alzheimer’s are available on the Internet,” Julie Robillard, Ph.D., a postdoctoral fellow at the National Core for Neuroethics at the University of British Columbia stated during a presentation on Monday at the Alzheimer’s Association International Conference 2013 in Boston, MA.
However, according to Robillard and a group of neurological experts, taking these online evaluations is about as useless as trying to start your car without those misplaced keys. The expert panel evaluated 16 different online Alzheimer’s tests, ranking them on a scale of one (very poor) to 10 (excellent) on measures such as reliability, validity and ethical practices.
Seventy-five percent of the web-based evaluations failed to obtain anything higher than a “poor” rating when it came to being able to accurately identify Alzheimer’s—an unsurprising finding, given that not even trained medical professionals can offer a definitive diagnosis of the disease.
Perhaps even more disturbing, all 16 tests came up woefully short with regards to ethical issues such as privacy policies, failing to disclose conflicts of interest, and being too vague or misleading when explaining the meaning behind different test results.
“Frankly, what we found online was distressing and potentially harmful,” says Robillard. “Freely accessible diagnostic tests that lack scientific validity and conform poorly to guidelines around consent, conflict of interest and other ethical consideration have the potential to harm a vulnerable population and negatively impact their health.”
Exercise caution when seeking out health information online
The Pew Research Center estimates that approximately 72 percent of American internet users scour the web for health information at least once a year. But, experts continue to urge caution, reminding people that, in the digital age especially, you can’t believe everything you read.
How do you separate health fact from fiction online?
The National Institutes of Health (NIH) suggests seven questions you should ask before trusting health information posted on a particular site:
- Who sponsors or runs the site? Site sponsors are a key indicator of whether the information contained within the site is reliable, or possibly biased. The NIH offers this key to site addresses to serve as a preliminary guideline for determining a site’s sponsor: .com is used by commercial websites, .edu is used by educational institutions, .gov is used by government agencies and .org is used by professional organizations (advocacy groups and research institutions.)
- Who is in charge of writing and reviewing the information on the site? If you can’t easily tell who is writing and overseeing the information that goes on a website, then that should be cause for concern. Anyone can write an article or testimonial and put it up on the Internet but, according to the NIH, “Reliable health information comes from scientific research that has been conducted in government, university, or private laboratories.”
- How recently was the information written? New discoveries are being made all the time, particularly in the health and science fields. Out-of-date articles may or may not contain accurate information.
- Does the information seem to be outlandish? Statements that seem too good to be true generally are. A site that promotes a particular product or service as a “miracle cure” is generally an untrustworthy source of information.
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