The Informed Patient: Does It Help or Hurt Their Care? 

Although research has demonstrated that physicians continue to be the most respected source of medical information for patients, they also frequently search the internet for information prior to an office visit.¹ Ease of access to medical information websites and the significant growth in the amount of health information available means that patients can find information in a matter of seconds. However, not all of the information provided by medical information websites is reliable, which has the potential to significantly affect both patient care and public health.

How Do Patients Seek Health Information?

Once, physicians were the primary gatekeepers of reliable health information. Over time, this role has evolved to include such media as print, television, and radio, and now, the internet. Today, patients can access health information in a number of ways, including¹:

• Health care professionals (physicians, nurses, pharmacists, and other health care professionals)
• Friends and family
• Social media (eg, YouTube, Twitter, Facebook, and TikTok)
• Medical information websites (WebMD, Mayo Clinic, and Cleveland Clinic, among others)
• Health apps, including various fitness, nutrition, or mental health apps 
• Television and radio 

As access to the internet has become more widespread over the past 20 years, researchers have documented the shift in patient health information-seeking behavior to include more online sources.² More than two-thirds of people who use the internet use it to search for health information. Most of these users search using a general search engine, such as Google or Bing, instead of starting their search on a dedicated medical information website.³ Social media serves as a source of health information shared by not only friends and family, but also the pharmaceutical industry and news media, among others. In research conducted recently, social media was determined to be one of the top 10 ways online health information is spread.⁴ 

Why Do Patients Visit Medical Information Websites?

Although searching for health information on the internet has been increasing over the past 20 years, the COVID-19 pandemic contributed to significant growth in this behavior. Without easy access to in-person medical advice, people turned to the internet for health information.⁵

A study conducted by researchers in Italy revealed that during the COVID-19 pandemic, the internet — not physicians — was the main source of health-related information. Additionally, one-third of people were found to have increased their health information-seeking behaviors during this time. Other factors that could contribute to this phenomenon include long wait times for in-person medical visits and the high cost of health care.⁵

Patients often visit medical information websites to help them do the following^6,7:

• Cope with an illness;
• Make a medical decision;
• Identify behaviors to prevent disease; 
• Decide whether to visit a health care provider;
• Prepare for an appointment; and
• Get a second opinion.

Almost one-half of American and European adults who sought health information online used the information to decide whether to visit a physician.⁶ 

Benefits of an Informed Patient

Health care is increasingly moving toward patient-centered delivery models that encourage informed patients. The benefits of patients seeking health information include⁸:

• Enhanced patient involvement in their care;
• Increased patient satisfaction;
• Improved communication with care providers; and 
• Improved overall quality of life.

Although some might fear that medical information websites will replace health care experts, research has not supported this supposition. Patients may be more likely to visit a physician after obtaining information online to get assistance with understanding complex health information. A study of people with type 1 diabetes found that accessing online health information did not decrease the use of provider-based care. Additionally, the researchers found a positive association between the use of search engines and the number of specialist visits.⁹

A study from Norway — where nearly 100% of the population has access to the internet — indicated that patients who used a web search engine were 2.95-times more likely to decide to visit a physician than those who did not. The association was strongest in younger, more educated people, with older and less educated people being less likely to make a decision to see a physician based on information obtained online.⁶ 

Decreased health care provider visits may be desirable in the face of rising health care costs. Convenient access to information could be expected to improve patient outcomes as they may be better able to make informed decisions about their care. Patient-perceived benefits of medical information websites include⁶:

• Easy access to information;
• Speed of access; and
• Anonymity.

Two years after the launch of a plain-language, evidence-based, practice health information website by the Dutch College of General Practitioners in the Netherlands, health care use decreased by 12%. These results show that high-quality online health information can improve self-management and decrease health care use, possibly saving money.¹⁰ 

Challenges of Online Health Information

Access to health information online is becoming increasingly important in a patient-centered care environment. However, finding reliable information can be challenging for patients. According to data from the Health Information National Trends Survey, more than two-thirds of Americans experience frustration while searching for health information online.⁸ This frustration could be related to the patient’s inability to understand the material. Medical information websites often provide information appropriate for individuals with reading levels above the recommended 6th- or 7th-grade reading level recommended by the National Institutes of Health (NIH).¹¹ One study that evaluated the readability of 40 medical information websites related to thyroid conditions found only 1 website with content at or below an 8th-grade reading level.⁴ Patients may also experience challenges accessing information in their chosen language or in a font size they are able to read.³ 

The use of reliable online health information is often inequitable, with misinformation being more common among those from racial or ethnic minorities, older adults, people with lower incomes, and those living in rural areas.⁸ 

Consumption of online health information could lead to negative consequences, such as⁶:

• Unnecessary office visits;
• Delays in care;
• Unnecessary treatment changes;
• Seeking harmful treatments;
• Increased health care spending;
• Increased patient anxiety; and
• Medical mistrust.

The possibility of negative consequences is especially true in the case of inaccurate or irrelevant health information available online. Unreliable information can mislead patients to make unnecessary office visits, thereby increasing health care costs. On the other hand, misleading information could also cause patients with serious medical conditions to delay accessing care.¹² 

Inaccurate or misleading online health information could also lead to mistrust of health care providers, the health care system, and medical treatments.¹³ This public health concern became even more evident during the COVID-19 pandemic when misinformation was widely spread by social media, leading to conspiracy theories and vaccine hesitancy.¹⁴ 

Are Medical Information Websites Reliable?

Health information available online is largely unregulated; anyone can produce content with health information. Patients may not have the knowledge or desire to make sure the information they find is from a reputable source. 

In an effort to evaluate information easily available to patients online, several researchers have evaluated the quality of such information on various topics. 

Several different studies evaluating YouTube videos on various health topics, such as testicular torsion, fibromyalgia, and neck pain, reported the quality of the information to be poor, with misleading, incomplete, or inaccurate information. Some researchers found this to be true even when the content was made by medical or education-related authors.^15-18

PlushCare, an online mental health provider, evaluated 500 videos from TikTok tagged with “#mentalhealthadvice” and “#mentalhealthtips” and found that 83.7% were misleading and almost 15% of videos provided potentially harmful information. The organization found that all content regarding attention-deficit/hyperactivity disorder (ADHD) was misleading. Most of the content evaluated was made by people without any relevant medical training.¹⁹ 

Studies have also indicated that the popularity of online health information does not necessarily mean it is reliable information. A team of ophthalmologists assessing the quality of online health information related to macular degeneration found that the top Google search results did not necessarily have higher-quality content than other sites.³ Similarly, the popularity of YouTube videos about neck pain was not correlated with quality.¹⁸ These findings highlight the difficulty that people experience in identifying quality health information online. 

Finding Reliable Online Health Information

Health care professionals have the opportunity to educate patients on how to find reliable sources of health information online.²⁰ In fact, helping health care providers and patients use health information technology to share information is one of the national objectives to improve health and well-being set by the Healthy People 2030 initiative.²¹ 

In general, online health information found on the following types of websites is accurate and reliable²²:

• Government websites such as the Centers for Disease Control and Prevention (CDC) and NIH
• Medical associations and societies
• Hospitals such as Mayo Clinic, Cleveland Clinic, and Johns Hopkins

Health care providers and patients should also be aware of red flags indicating that online health information may not be trustworthy, including²²:

• The author of the information cannot be found
• No citations are provided
• The purpose of the information is to sell a product
• The information is outdated
• Sensationalist claims like “secret cure” or “miraculous result” are used
• The content contains spelling errors or poor grammar 

This article originally appeared on Psychiatry Advisor.