The risks of online self-assessments

Background

Many people who worry about their health or the health of a family member turn to the Internet to find information:

• A number of websites hosted by universities, for-profit companies, charities and governments offer information about Alzheimer’s disease and other dementias.
• Some of these sites also offer self-assessments of cognitive health in the form of tests, quizzes or questionnaires that claim to evaluate whether someone has dementia or is at risk of developing the disease.

When these online self-assessments are done in the community without professional analysis, they are known as memory screening tests.

It can be tempting to take one of these memory screening tests to get more information. At first glance, these tests seem to offer a lot of benefits:

• You only need to take one test. You might answer only a few questions before getting a result. The result may be just a simple number that tells you whether you have memory problems or perhaps dementia. In contrast, the process of getting a diagnosis can be complex, difficult and can take some time.
• These tests claim to measure one or a combination of your cognitive abilities, including language, thought, memory, attention, perception and everyday skills such as driving and planning tasks.
• Some tests also claim to evaluate your risk factors – the chances that you may get dementia.

However, more and more studies suggest that memory screening, whether online or otherwise, is not necessarily useful. Experts have shown that screening may have negative consequences for individuals and can add burden to the healthcare system.

What are the issues?

Misleading, inaccurate or not comprehensive enough

There is no single test, online or even at the doctor’s office, that can accurately determine whether you have dementia or not.

The diagnosis of dementia is indeed a complex process. But that's because it requires careful medical evaluation, with steps such as establishing a medical history and undergoing physical and mental status exams. Because this process is so thorough, it eliminates other possible causes behind your symptoms, and you can have an accurate diagnosis.

Lack of professional analysis

A diagnosis is the process of identifying the nature of the illness that an individual is experiencing. When your doctor or a qualified specialist undertakes your diagnosis, they are administering and evaluating your medical history and test results using their skill, knowledge and experience. This is different from memory screening tests, which may not have the professional analysis that is tailored to you.

For example, online self-assessments of cognitive health can result in “false positives” and “false negatives":

• A “false positive” occurs when a person who doesn’t have dementia “fails” or scores poorly on the test.
• A “false negative” happens when a person who does have dementia “passes” or scores well on the test.

It takes time and expertise to correctly assess someone for dementia, and this assessment should only be carried out by a qualified healthcare provider.

Poor quality and lack of evidence

Many studies have shown that online health information on a variety of topics is frequently of poor quality. Using incomplete or incorrect information to make healthcare decisions can have negative consequences:

• Information about your risk for diseases in particular can be difficult to understand. Actions based on poor information can threaten your health and safety (for example, taking medications you don’t need).
• Looking for health information online can also lead to anxiety, as there can be clashing information and it can be difficult to determine which information can help you.

While the Internet offers some valuable information about dementia, it can be difficult to identify which websites provide high quality information and which websites do not. If you're concerned about dementia, ask a qualified healthcare provider, like your family doctor, about reputable online sources of information.

Ethical concerns

Online self-assessments of cognitive health also present certain ethical issues. For example, some organizations that offer self-assessments are in a position to benefit from the people who use them. This is a conflict of interest. In cases of conflict of interest, the quality of the self-assessments can be jeopardized.

Other concerns include issues around the privacy and confidentiality of the information collected in online self-assessments. If you're sharing your information online with an organization, it's important to know what they are using it for. An organization that has a poor privacy policy – or none at all – is not an organization you should trust with your personal information.

Our position

The Alzheimer Society recommends that people who are experiencing memory issues, accompanied by difficulties in day-to-day activities and skills, should contact their healthcare provider.

• Alzheimer’s disease and other dementias are complex diseases of the brain and qualified healthcare providers should be involved in diagnosing these conditions.
• Online self-assessments of cognitive health are possibly useful for the screening of Alzheimer’s disease and other dementias. However, they may also pose various risks.
• Scientists have raised ethical concerns with most online self-assessments for the diagnosis or screening of Alzheimer’s disease and other dementias, such as potential issues around the privacy and confidentiality of the information collected.
• The Alzheimer Society provides information, education and support to help people living with dementia and their families live as well as possible.

More useful links and resources

Online self-assessments for Alzheimer's disease and other dementias. Alzheimer Society of Canada, 2014. Our full position statement on this topic.

Evaluating the evidence: Direct-to-consumer screening tests advertised online. Kimberly M. Lovett, MD; Timothy K. Mackey, MAS; and Bryan A. Liang, MD, PhD, JD; 2012. This article collects information on multiple online screening tests, finding that virtually all of them are unable to be recommended according to evidence-based guidelines. The full text of this paper is available to read online or can be downloaded as a PDF.

Political drive to screen for pre-dementia: Not evidence based and ignores the harms of diagnosis. David G. Le Couteur, MD; Jenny Doust, PhD; Helen Creasey, MD; and Carol Brayne, PhD, CBE; 2013. This article examines how pre-dementia screening can be untested, uncontrolled and lack sound evidence. The full text of this paper is available to read online or can be downloaded as a PDF.

Readability of consumer health information on the internet: A comparison of U.S. government-funded and commercially funded websites. Zara Risoldi Cochrane, PharmD; Philip J. Gregory, PharmD; and Amy F. Wilson, PharmD; 2012. This article compares the readability of health information found on U.S. government-funded websites versus information found on commercially funded websites. Note that the full text is behind a paywall.

Scientific validity and ethics of freely accessible online tests for Alzheimer disease. Alzheimer's Association, 2013. This media statement reports on data showing that 16 freely accessible online tests for Alzheimer's disease scored poorly on scales of overall scientific validity, reliability and ethical factors. This data was presented by Dr. Julie Robillard, a postdoctoral fellow at the National Core for Neuroethics at the University of British Columbia, at the 2013 Alzheimer's Association International Conference (AAIC) in Boston.

A usability problem: Conveying health risks to consumers on the Internet. Constance M. Johnson, PhD and Ryan J. Shaw, MS, RN; 2012. This article suggests that many people do not understand risk and often misinterpret graphical displays of risk and associated terminology, underscoring the importance of clear, accessible health information on consumer health websites. The full text of this paper is available to read online.