"Those patients (and their caregivers) who take ownership of more aspects of their health care experience, including relevant and personalized information, will have better outcomes," writes Steven A. Kaplan, MD.
|Steven A. Kaplan, MD||Dr. Kaplan|
Active patient engagement and shared decision-making are the new normal in the patient-physician relationship. Reaching this goal can be challenging. In literature reviews and studies conducted on shared decision-making, a key requirement is an informed patient (Institute of Medicine. Health Literacy: A Prescription to End Confusion. Washington, DC: The National Academies Press, 2004; Clin Nephrol 2014; 81:30-7).
Often, patients seek health care professionals to address problems they have difficulty describing. In particular, urologic issues tend to elicit either vivid descriptions or completely embarrassed silence from patients. With this type of starting point, sometimes the challenge of shared decision-making can be overwhelming. Through the process of diagnosis and treatment, we are often left trying to bridge the knowledge gaps and overcome the embarrassment barriers.
In today’s world of rapid information processing, a challenging concern is patients who self-diagnose based on misinformation they read on the Internet. Weekly, we encounter confused and scared patients because of something they’ve read online that’s wrong or doesn’t apply to them.
As Pew Research found in a 2013 survey, 72% of adult Internet users say they have searched online for information about a range of health issues like diseases and treatments. In too many cases, low health literacy interferes (J Med Internet Res 2015; 17:e112). As the National Academies’ Health and Medicine Division document “Health Literacy: A Prescription to End Confusion” notes, 90 million American adults (almost half of the adult population) have low health literacy, defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions (J Am Heart Assoc 2015; 4:e000682).”
Low health literacy is associated with poor outcomes, including increased mortality and re-hospitalizations (Clin Nephrol 2014; 8:30-7; Cancer 2012; 118:3842-51). More specific to urology, research has shown low health literacy can impact the quality of life of those with newly diagnosed, localized prostate cancer (J Health Commun 2010; 15:3-17).
Moreover, patients with low health literacy can’t evaluate and discern trustworthy information. Often, inaccurate sites will be linked to others that are equally problematic, reinforcing mistaken, wrong, or even erroneous information (N Engl J Med 2010; 362:1063-6). Web searches can become chronic for those with anxiety. “Cyberchondria” is a condition resulting from searching the web-unfounded anxiety based on looking up symptoms (J Bone Joint Surg Am 2010; 92:1612-18).
Too often, patients defer actual diagnosis and treatment and do themselves harm with random research. To address this, the following four findings were gleaned from what’s out there on “Dr. Google” from the perspective of a urologist and urology patient.
First, it’s important to understand that online researchers are both patients and their caregivers. Thirty-nine percent of U.S. adults are caregivers and 84% of caregivers with Internet access said in a 2013 survey they went online within the past year to research health topics such as medical procedures, health insurance, and drug safety.
Second, these online researchers (77%, according to Pew’s research) usually start with typing into a search engine, rather than consulting a specific website.
Third, website variability is documented in research, yet as Hartzband and Groopman state, “Material is perceived as factual merely because it is on a computer screen (N Engl J Med 2010; 362:1063-66).” For example, in a review of 154 websites for content quality of orthopedic sports medicine diagnoses, reviewers used a 100-point scale to rate the content. The average score for quality of the content was 55 (Urology 2010; 75:619-22). A review of YouTube video content on prostate cancer appeared in 2010 in Urology. The reviewers concluded that much of the information was “inadequate” and “unbalanced.”
Fourth, when a patient gets over 33 million Google search results on “prostate cancer” (March 9, 2016 search numbers), he is overwhelmed. Spinning through just the first page of those results is daunting.
These four insights make it clear that health care professionals can make a huge difference in what our patients and their caregivers see online by actually prescribing websites that are trustworthy.
Table 1 shows the top 10 health websites (March 2016) patients visit from their Google searches.
A recent study in the Annals of the American Thoracic Society (2015; 12:961-5) looked at the top eight health information websites seen by people with chronic lung diseases-asthma, COPD, and idiopathic pulmonary fibrosis-when they searched in February 2015. Their assessment? Sites were promotional, educational, or a combination of the two. WebMD and Mayo Clinic’s websites were described this way: “both sites… include advertisements about specific asthma medications. The Mayo Clinic site includes the ability to schedule an appointment with a health care provider, pay medical bills, and make a donation. WebMD offers viewers the opportunity to subscribe to a newsletter featuring health-related topics.”
Further, the authors stated that Healthline “includes prominent advertising at the top of the screen for pharmaceutical products, a hotel chain, and a clothing store.” Medscape (not part of the top 10 list but associated with WebMD) also had “prominent” advertisements.
A quick check of the first five websites that came up during a Google search (March 9, 2016) of benign prostatic hyperplasia, erectile dysfunction, prostate cancer, and urinary incontinence is shown in table 2. As you can see, WebMD is in the top five for 75% of these searches. Healthline is also in the top five for resources for erectile dysfunction. Many of these website resources are supported by advertisers.
Luc Colemont, MD, a gastroenterologist in Antwerp, Belgium, tweeted in February 2015, “In 2015, people are still dying because of a lack of information.”
Most medical librarians recommend prescribing content from U.S. government websites (those with .gov at the end of their address). In addition, they recommend websites ending in .org (which are usually non-profits) and .edu (which are educational institutions). At our Men’s Health Center, we recommend the following sites:
MedlinePlus. MedlinePlus is a site run by the National Library of Medicine. This resource is updated on a daily basis. The site covers over 975 diseases and conditions. With no advertising, it is a resource that can be recommended without concern.
Urologyhealth.org. The website of the Urology Care Foundation, which is the foundation of the AUA, contains information on 140 urologic conditions that have been crafted for patients. Because this website is supported by donations, not advertising, as well as being based on AUA guidelines, you can feel comfortable recommending this website to your patients and their caregivers.
Medivizor.com. This new site is a HIPAA-compliant health service that combines patent-pending personalization technology with plain-language translations of cutting-edge medical journal articles to fill this gap. Recommended by Forbes magazine, practicing urologists, surgeons, radiologists, patients, and caregivers, Medivizor is easy to subscribe to and is free to the subscriber. (Full disclosure: I am one of the site’s founders.)
Patients sign up on the site and answer questions about themselves and their medical condition(s). By leveraging knowledge of an individual’s medical profile, including all primary illnesses and comorbidities, treatment history, and personal preferences, Medivizor’s technology brings to the fore all the clinically relevant research, updated guidelines, and matching clinical trials. The system is further infused by the wisdom of the crowd, leveraging all actions and interactions by system stakeholders to help affect the content curation. It provides this information to the patient directly via email.
As an October 2014 article in Forbes stated, “there is still a serious need for patients to access in-depth information about the conditions that doctors have already diagnosed.” Although MedlinePlus and Urologyhealth.org are excellent sites, they are not personalized nor do they provide in-depth, cutting-edge information that is particular to the patient’s specific diagnosis condition. Medivizor.com, by contrast, accomplishes these goals.
In the end, with more information, patients will have a greater stake in their health care. Those patients (and their caregivers) who take ownership of more aspects of their health care experience, including relevant and personalized information, will have better outcomes.
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