What to Do When Nearly All of Online Health Information is Wrong

If you’re a current health professional – a nurse, pharmacist or physician – who cares for patients, you’re aware of the new physician in town: Dr. Google. The ability to access the internet has grown tremendously in the 21st century to the point where almost everyone living in developed countries own or have access to a phone or computer and most people use the internet to look for online health information (OHI).

Although on the surface this might seem like a good thing, we professionals often see the drawbacks of this progression. If those drawbacks lead to negative health outcomes you obviously can’t sue Dr.Google for malpractice. As we’ll see in this article, internet users should be aware of the real risks associated with online health information (OHI) and therefore should take specific precautions when searching the web for any health related issue.

Who’s searching internet for OHI and what are they looking for?

What’s fueling this situation is the increased emphasis on patient-focused medical care which has accelerated the demand for plainspoken information explaining what are really complex diseases to manage and educate (e.g.: diabetes or heart problems). The typical patient who surfs the web for OHI is usually an adult, sometimes a teenager or tech-savvy elderly person and who generally search for at least one of three things: diseases or specific symptoms for self-diagnosis reasons; lifestyle interventions (diet, exercise, smoking cessation,etc); or medications (not including natural health products). First worrisome facts: about a third of all OHI-seekers regularly consult with Dr.Google while two out of three don’t talk about it with their family physician.

Furthermore, patients suffering from stigmatized conditions (e.g.: depression, cancer or herpes, etc) are more likely to seek OHI and increase their use of healthcare services – like physician or ER visits – after going on the internet. However, psychiatric stigmatized conditions (like depression or schizophrenia) seem to be driving this overuse of health care problem, compared to medical stigmas or other chronic illnesses. This has lead many to use the label “cyberchondriacs” referring to that group of people (cyber meaning computer and hypochondriac an excessive preoccupation with one’s health).

Even if the extent of possible online internet use varies from discussion groups (usually as forums of specific populations or people with certain medical conditions), blogs, magazines, traditional media (e.g.: CNN) to eHealth portals where patients can access databases of information possibly including their personal medical data, most of the OHI seekers generally look passively at information without ever being involved in forums, commenting or wanting to download their latest x-ray scan on their tablet.

The benefits of patient self-care principle and the access to health info

There’s no disputing that the empowerment and conveniency of OHI make it a very attractive means of getting prompt advice: a list of side-effects for Penicillin is literally a click away; someone with a rare disease can instantly find an online support group or connect with others with the same condition; and anyone can easily find out how concerned they should be about their weird rash. If more people have access to information about their health, then they should be able to make better health decisions and use up less health care resources. Right?

One can certainly argue that OHI portals might help to decrease system-wide health care costs by reducing unnecessary primary care physicians (family doctors or emergency care) visits from the worried well – healthy people who seek medical care because they looked something up online. A survey-based study on the United Kingdom’s NHS Choice health portal seems to suggest that it may do just that. The government-sponsored, heavily used website (7 millions visits per month) is estimated to save the healthcare system nearly 100 million euros yearly (6).

It is important to note that the UK are pioneers in terms of government sponsored online health information and that their relatively recent health portal is unprecedented anywhere else in the world. It is encouraging to see that this particular health portal has been associated with potential savings on healthcare costs but these results are only preliminary and much more research is needed to conclude that this particular type of OHI can really be a cost-effective way to address the many problems with Dr.Google.

The Risks of Accessing OHI

As it turns out, there are many reasons why people should avoid Dr.Google altogether or, at least, not to act on the information without talking to a qualified health professional. This is because studies that have looked into the quality of Dr.Google by analyzing websites from Google search results and what the results suggest is clear: most OHI is either incomplete, irrelevant, misleading or plainly false.

In one often cited study, investigators assessed the top 100 UK websites retrieved by Google for 5 common pediatric questions and compared the information to current evidence-based recommendations. They found that only 39% of sites were correct. Importantly, government sponsored websites always gave correct information while traditional news sites were only right half of the time. Interest groups or commercially sponsored sites were even less reliable (7).

Another study looked at teen suicide information on the internet: authors specifically looked if statements relating to youth suicide risk factors and suicide prevention strategies were based on evidence. Their results also showed that government websites were the most reliable, yet only 44% of all statements were supported by evidence. The authors also found that websites specifying an author and recommendations to consult a health professional were more likely to have correct statements (8) while another study suggest the same when the author attributed the source of the OHI (9). In fact, a slew of studies looking at OHI reliability on various health questions or statements and predictably show the same poor results (8-14).

What about Dr.Wiki? It has been widely reported that Wikipedia – a crowd-sourced information website that anyone can contribute to and edit – is said to be as reliable as academic textbooks and encyclopedias. At least half of physicians or medical students reportedly use it as a source of information in one survey. I’m not disputing the argument that Wikipedia is a good source of information on, say, the French Revolution or if Hannah Montana’s true identity is this guy’s daughter. But when it comes to its reliability on medical information, the evidence is inconclusive at best (15,16).

The amount of OHI vastly exceeds what humans can read in their lifetime, and unless you have specific training to analyse medical literature, even a college educated person can get lost in the information overload. Good OHI tends to require high literacy levels in order to understand while seekers of OHI may not even be able to discern good from bad information (17,18) nor even know the existence of quality indicators (as we’ll see in our last section). There are many more reasons that explain why untrained people have difficulty in evaluating OHI, as stated by Cline and Hayes (19).

“(OHI-seekers) fail to recognize that key information is missing, fail to distinguish between biased and unbiased information, fail to distinguish between evidence-based and non-evidenced-based claims, and misunderstand health information intended for health professionals. These limitations are particularly salient given evidence that people may give greater credibility to information from computers than from other media”.

Tools to assess reliability of Online Health Information

Specifically because OHI is so vast and unreliable that scientists have designed different models to assess the accuracy of health websites. The gold standard is to directly look at general statements or, alternatively, whether answers to questions found on websites are in line with current, evidence-based medicine. However, because it’s very time consuming for professionals to do – check the veracity of every article our patients read – some investigators have devised tools (mostly checklists) using quality indicators to predict the accuracy of a website’s information.

Those indicators are things like whether a particular article or website has a stated author and if they have any qualifications; if there are links to commercial sites; if the source of the information is referenced; or, trivially, if the website is cleverly designed. Out of all the few dozen tools that have been developed, only about half are still in working order; only a quarter or less seem to agree with each other in terms of accuracy ranking (20); and they still are criticized for their reliability and validity (21). In other words: tools of quality indicators may help at finding potentially reliable OHI on general topics, they are not sensitive enough to root out the bad information (22,23).

Conclusion

Widespread access to internet and the gigantic amount of health information it contains has created a real problem: uncorrected false or misleading OHI can lead to negative health outcomes with potentially deadly consequences. These reasons can vary from improperly stopping medications, avoiding medical care for dangerous symptoms due to false hope, or seeking certain ineffective therapies or products instead of proven treatments. Although OHI serves an important educational need for patients in patient-centered care model, the overwhelming evidence shows that caution is warranted.

Everyone should be aware that they should never act on any health information without consulting with a registered and qualified health professional such as physician, pharmacist or nurse. This cannot be overstated: health professionals are trained, accountable and are ethically and legally required to uphold your safety above everything else. Dr.Google does not have any of these safeguards in place. Remember, the internet is the wild wild west of medical information where anything goes and the truth is nearly impossible to find. Still not convinced? Then look at this.

Bottom Line Points

  • Nearly all of OHI is either misleading, incomplete, unsupported by evidence or plainly false
  • Only governmental sources of OHI have been consistently been shown to be reliable
  • Stigmatized psychiatric conditions (ie: major depressive disorders, schizophrenia) access more OHI and may utilize more healthcare resources; extra attention to their concerns may be warranted to reduce burden on health care system
  • Tools of quality indicators are mostly unvalidated (DISCERN is the only exception but is used mainly for research purposes) and may not be sensitive enough to root out bad information
  • Governmental agencies (like FDA and Health Canada) may have an important public health opportunity to address this problem by building and maintaining health portal similar to UK’s Choices.
  • Professional Societies also have an opportunity to create more comprehensive online patient information materials that may serve as a resource to physicians and their patients (12).

Reference

  1. T Tonsaker, G Bartlett, C Trpkov, Health information on the Internet: Gold mine or minefield?, Canadian Family Physician, Vol 60: may • mai 2014 : http://www.cfp.ca/content/60/5/407.full.pd
  2. Cathy Underhill and Larry McKeown, Getting a second opinion: Health information and the Internet, Health Reports, Vol. 19, No. 1, March 2008, Statistics Canada, Catalogue 82-003
  3. BUPA.com Online Health report (2010)
    http://www.cbc.ca/news/online-health-advice-sought-by-more-canadians-1.982301
  4. YY Zhou, MH. Kanter,JJ Wang, T Garrido, Improved Quality At Kaise Permanente Through E-Mail Between Physicians And Patients, 10.1377/hlthaff.2010.0048Health Aff July 2010 vol. 29 no. 71370-1375 : http://content.healthaffairs.org/content/29/7/1370.long
  5. J Murray et al. “Use of the NHS Choices Website for Primary Care Consultations: Results from Online and General Practice Surveys.” JRSM Short Reports 2.7 (2011): 56. PMC. Web. 11 Jan. 2015.
  6. Scullard P,et al., Googling children’s health: reliability of medical advice on the internet, Arch Dis Child. 2010 Aug;95(8):580-2
  7. Szumilas M1, Kutcher S.Teen suicide information on the internet: a systematic analysis of quality.Can J Psychiatry. 2009 Sep;54(9):596-604.
    Ipser JC1, Dewing S, Stein DJ.,A systematic review of the quality of information on the treatment of anxiety disorders on the internet.Curr
  8. Psychiatry Rep. 2007 Aug;9(4):303-9.
    Goslin RA1, Elhassan HA,Evaluating internet health resources in ear, nose, and throat surgery,Laryngoscope. 2013 Jul;123(7):1626-31
  9. Whelan AM1, Jurgens TM, Bowles SK, Doyle H, Efficacy of natural health products in treating osteoporosis: what is the quality of internet patient advice?Ann Pharmacother. 2009 May;43(5):899-907
  10. Wasserman M1, Baxter NN, Rosen B, Burnstein M, Halverson AL,Systematic review of internet patient information on colorectal cancer surgery, Dis Colon Rectum. 2014 Jan;57(1):64-9
  11. Grewal P1, Alagaratnam S, The quality and readability of colorectal cancer information on the internet.Int J Surg. 2013;11(5):410-3
  12. Modave F1, Shokar NK, Peñaranda E, Nguyen N.,Analysis of the accuracy of weight loss information search engine results on the internet.Am J Public Health. 2014 Oct;104(10):1971-8.
  13. NHS Choices, Wikipedia “Not a Reliable Source” of Health Advice, may 28, 2014 (accessed 08/01/15)
  14. Hasty RT, et al., Wikipedia vs Peer-Reviewed Medical Literature for Information About the 10 Most Costly Medical Conditions, The Journal of the American Osteopathic Association. May 2014
  15. Birru MS, Monaco VM, Charles L, Drew H, Njie V, Bierria T, Detlefsen E, Steinman RA, Internet Usage by Low-Literacy Adults Seeking Health Information: An Observational Analysis, J Med Internet Res 2004;6(3):e25
  16. Payne S. et al., Written information given to patients and families by palliative care units: a national survey, The Lancet, Volume 355, Issue 9217, Page 1792, 20 May 2000
  17. R. J. W. Cline and K. M. Haynes, Consumer health information seeking on the Internet: the state of the art, Health Educ. Res. (2001) 16 (6):671-692.
  18. Breckons M, Jones R, Morris J, Richardson J, What Do Evaluation Instruments Tell Us About the Quality of Complementary Medicine Information on the Internet?, J Med Internet Res 2008;10(1):e3
  19. Gagliardi A1, Jadad AR.Examination of instruments used to rate quality of health information on the internet: chronicle of a voyage with an unclear destination,BMJ. 2002 Mar 9;324(7337):569-73.
  20. Bernstam EV1, Walji MF, Sagaram S, Sagaram D, Johnson CW, Meric-Bernstam F., Commonly cited website quality criteria are not effective at identifying inaccurate online information about breast cancer. Cancer. 2008 Mar 15;112(6):1206-13. doi: 10.1002/cncr.23308.
  21. Khazaal Y1, Chatton A, Zullino D, Khan R.HON label and DISCERN as content quality indicators of health-related websites,Psychiatr Q. 2012 Mar;83(1):15-27
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