The combination of personal curiosity about one’s health conditions and the extent of available information on the internet leads millions of people every day to do their own research and, in some cases, also self-diagnose and self-treat. A 2021 survey found that close to 60% of Americans go online to get medical questions answered, and even more of us use online sources to research medical recommendations our doctors have given us.
But there are two compelling reasons why you would be wise to tread carefully with this independent “research.” First of all, the information you get may not be accurate. Secondly, you can be exposing more of your personal life than you realize, to parties you don’t know, for uses you are unaware of.
The accuracy factor for Colorado patients Checking Personal Health Issues Online
AARP, an AgeWise Colorado Provider, looked at scenarios that trigger our personal health sleuthing and pointed out the possible pitfalls. For instance, if you simply type a particular symptom or condition into a search engine, you may well get sites popping up that look official and credible but could be just dressed-up ads for products or services without reputable medical backing. If one of these sites is also tagged as “sponsored,” this means the source has paid extra to show up higher in the site listing, which says nothing about its credibility. With the advent and growing use of artificial intelligence, things become even more problematic. “Chatbots,” for example, might pull information from everywhere online and meld it into an article, with the varied sources of the information being both traditional and unknown, some trustworthy and some not.
So-called symptom-decoding tools purport to offer you a diagnosis and/or treatment strategy. Problem is that surveys have shown these to be accurate only about 50% of the time. AARP recommends instead that you first go to a reputable site and then type in your symptom or diagnosis (if you know it.) Reputable sites that are government-affiliated include the National Institutes of Health (www.nih.gov), the Centers for Disease Control and Prevention [CDC] (www.cdc.gov), the National Institute on Aging (www.nia.nih.gov), and the American Geriatric Society (www.healthinaging.org). Well established national medical centers are other good sources, such as the Mayo Clinic (www.mayoclinic.org), the Cleveland Clinic (www.clevelandclinic.org), and others. Reputable Colorado sources include the University of Colorado Health System (www.uchealth.org), the University of Colorado Anschutz Medical Campus (https://www.cuanschutz.edu), and the Centura Health System (www.centura.org.) You can also locate county-by-county clinics in Colorado on the website of the Colorado Department of Public Health and Environment (https://cdphe.colorado.gov/fpp/clinics-and-services/cliniclocationscounty.)
Treat fantastic medical claims with skepticism when checking Personal Health Issues Online
How else might you misstep in your online research? You might come across a news story with some astounding medical claim. Before embracing this as fact, AARP advises looking for links to studies that support the claim. If there are none, be wary. And even if there are cited studies, critically examine who did them and how professionally designed and unbiased the studies were. Were they double-blind with randomized control to enhance objectivity? How many study participants were there? Who funded the studies? Were the results published in peer-reviewed journals? It is also strongly recommended that you not rely on forums, review sites and social media for health information, because they can not only be full of false ideas and claims but can also be alarmist, leading you to impulsive and potentially dangerous action.
The risks to Coloradans’ privacy
What you get out of wayward online health sleuthing is one risk. What you enter into your sleuthing presents another peril. The Los Angeles Times, in reporting specifically on apps people turn to for mental health issues, said that “every second, thousands of people” tell their phone or computer something about their health they might not want anyone else to know as they search for mental health information and advice. Depending on users’ security settings, this personal information can be stored in their profiles, just as it can be collected on general health and wellness apps.
The Times went on to cite a report by Mozilla (creator of the Firefox web browser) on privacy practices that found that nearly 60% of the privacy practices of popular mental health apps fell short of the app company’s minimum standards, with some of those privacy practices getting worse instead of better over time. Some apps began collecting data from users moments after they were activated. The apps offered such services as direct input from therapists, community support pages, well-being assessments, and artificial intelligence chatbots.
Many personal details of Coloradans might be shared when Checking Personal Health Issues Online
The Times noted that the federal law protecting personal health data does not reach many of the companies that collect and share your data. “Indeed,” noted the Times, “the Health Information Portability and Accountability Act (HIPAA) applies only to doctors, hospitals, and the companies they have business agreements with.” That is why Facebook, Google, etc. can collect and store data on your health-related inquiries and activities and share it with third parties. This can be information dealing with a host of sensitive personal issues such as depression, PTSD, eating disorders, suicidal thoughts, and the like. Besides the privacy breach itself, another result can be that vulnerable users get targeted with personalized ads.
The Times found that even supposedly anonymous profiles can be linked to real names. The Journal of the American Medical Association has described a study of nearly 600 mental health apps that found close to half of them shared data with third parties. Data brokers who collect and sell this data at times include not only specific mental symptoms or diagnoses but also ethnicity, age, and gender details, up to and including marital status, religion, and net worth.
Protective steps Coloradans can take Checking Personal Health Issues Online
The Times quoted Jen Caltrider, who works on Mozilla’s privacy research, as saying even though Americans talk more openly these days about their mental health, “it’s something that a lot of people want to keep private” because of the risk of harm that people face if their personal information gets shared for the wrong reasons.
What should you do? Privacy advocates say carefully read privacy policies, as legalistic as they might be. See if the company sells data and/or how widely data is shared. Understand security protocols of entities like Google Play and Apple’s App Store. Don’t use your Facebook or Google ID to sign into an app. Never download an app that doesn’t have a privacy policy, and stay away from old apps that are no longer supported, because they’re not monitored for bugs and security vulnerabilities.
As with the advice given above regarding accuracy of health information, the privacy risks add an additional incentive to seek your answers to health/medical questions only from sources you know to be reliable and reputable. In Colorado in the mental health area you can find many of these sources by connecting to this AgeWise Colorado article: https://agewisecolorado.org/blog/mental-health-resources-for-colorado-older-adults/. Or visit the Colorado Behavioral Health Administration at https://bha.colorado.gov/.
