An expert panel found that 16 freely accessible online tests for Alzheimer’s disease and memory loss scored poorly on scales of overall scientific validity, reliability and ethical factors.
“As many as 80 percent of Internet users, including a growing proportion of older adults, seek health information and diagnoses online,” said Julie Robillard, Ph.D., at the National Core for Neuroethics at the University of British Columbia in Vancouver, Canada
“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. However, little is known about the scientific validity and reliability of these offerings and ethics-related factors including research and commercial conflict of interest, confidentiality and consent. Frankly, what we found online was distressing and potentially harmful,” Robillard added.
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Scientific Validity and Ethics of Freely Accessible Online Tests for Alzheimer Disease
- North American demographics are rapidly shifting towards an increasing number of older adults, and the prevalence of Alzheimer disease is projected to rise significantly.
- The active promotion of empowered, healthy aging is a priority.
- Communication of health information through online sources is widespread, easily accessible and sought by a large proportion of adults.
- Self-diagnosis behavior in particular is increasingly popular online, and freely accessible tests for Alzheimer disease are available on the Internet.
- Little is known about the scientific validity and reliability of these tests and ethics-related factors including research and commercial conflict of interest, confidentiality and consent.
- To address this knowledge gap, researchers used information-mining techniques to retrieve 16 online tests for Alzheimer disease and used content analysis to establish the characteristics of each test.
- They then conducted an expert panel review of each of the tests using five-point Likert Scales (1: very poor, 2: poor, 3: fair, 4: good, 5: excellent) to evaluate scientific validity and reliability, appropriateness of human-computer interaction features and ethics-related factors.
- Reserchers found that most online tests for AD (12/16) scored low (very poor or poor) for overall scientific validity and reliability.
- In terms of appropriateness of the human-computer interface for an older adult population, the majority of tests (10/16) scored fair across all criteria.
- The scores for ethics-associated factors were the lowest — over all criteria evaluated, a majority of tests scored very poor (9/16), and the remainder (7/16) scored poor.
- Overall, the scientific quality of freely accessible tests online is low and these tests conform poorly to conventional guidelines around consent, conflict of interest and other ethical considerations.
- These findings have significant implications for the growing computer-literate older adult population.
- The issues uncovered suggest that further evidence and informed policy are needed to promote the greatest benefits from tools and information available on the Internet.
Julie Robillard, et al. Scientific Validity and Ethics of Freely Accessible Online tests for Alzheimer Disease (Funders: Canadian Institutes of Health Research; Canadian Dementia Knowledge Translation Network; Foundation on Ethics and Technology)
Presenting author: Julie Robillard , Julie Robillard1, Claudia Jacova2, B. Lynn Beattie3, Judy Illes4 1University of British Columbia, Vancouver, British Columbia, Canada; 2The University of British Columbia (UBC), Vancouver, British Columbia, Canada; 3UBC, Vancouver, British Columbia, Canada; 4National Core for Neuroethics, Vancouver, British Columbia, Canada.
Some examples of evaluation criteria used by the expert panel were:
For validity and reliability:
- Are the content and breadth appropriate to achieve test claims?
- Are test questions based on current, peer-reviewed evidence?
- Would the test have test-retest reliability?
- Are the instructions clear and easy to understand?
- Is the test visually adequate (font size, contrast, etc.)?
- Does the test take varying levels of computer knowledge into consideration?
- Are issues of privacy and data collection discussed?
- Are conflicts of interests clearly stated?
- Is the wording of the outcomes ethically appropriate?
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