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Seeking Consumer Health Information on the Internet
By
July/August 2013 Issue

Have you ever been frightened by the results of a medical search you conducted for yourself or a loved one, perhaps believing that a persistent headache is really a brain tumor, that indigestion or fatigue may signal cancer, or that chest pain is indicative of a heart attack or serious cardiac condition? Do you second-guess your physician about a diagnosis or prescription, bringing to medical appointments reams of paper articles or portable devices loaded with disease and treatment information?

If you are obsessive about searching for healthcare information, you may be a “cyberchondriac,” defined by Oxford Dictionaries as “a person who compulsively searches the Internet for information on real or imagined symptoms of illness” (oxforddictionaries.com/definition/english/cyberchondriac). Although research may be legitimate—we simply wish to find out more about a diagnosed medical condition or prescribed drug—I suspect many of us, at one time or another, have spent countless hours searching our symptoms and imagining the worst possible scenario.

The literature is inconclusive about the extent of cyberchondria. According to the American Medical Association (AMA), cyberchondria is on the rise (“Cyberchondria: The One Diagnosis Patients Miss,” Christine S. Moyer, Jan. 30, 2012; amednews.com/article/20120130/health/301309952/1). The AMA cites a 2008 Microsoft study of consumer and employee health-related searches (“Cyberchondria: Studies of the Escalation of Medical Concerns in Web Search,” Ryen W. White and Eric Horvitz; research.microsoft.com/pubs/76529/TR-2008-178.pdf). Microsoft found that “nearly nine out of ten respondents reported at least one instance where a Web search for the symptoms of basic medical conditions led to their review of content on more serious illnesses.” The AMA more recently interviewed some of its member physicians, who see an increase in the number of their patients who bring internet medical information to appointments and emergency rooms.

However, a May 16, 2012, survey released by Wolters Kluwer (www.wolterskluwerhealth.com/News/Pages/Survey-Consumers-Show-High-Degree-of-Trust-in-Online-Health-Information,-Report-Success-in-Self-Diagnosis--.aspx) reported very different results. The Kluwer survey, “Consumers Show High Degree of Trust in Online Health Information, Report Success in Self-Diagnosis,” found that only 4% of consumers claimed to experience cyberchondria. Further, 63% of the respondents said they never misdiagnosed themselves when looking for medical information on the internet, while 67% of the respondents felt they were better informed as patients by conducting their own research, and 65% trusted the information they uncovered.

The number of people searching for medical information on the internet is large and continues to rise annually. The Pew Research Center’s Internet & American Life Project estimates that 72% of U.S. adults looked for health information on the internet within the past year, with the most popular topics searched being diseases/medical conditions, treatments/procedures, and doctors/healthcare providers (pewinternet.org/Commentary/2011/November/Pew-Internet-Health.aspx).

Let’s look at the different types of medical-seeking behavior among consumers/patients and how they are searching the internet to gather healthcare information. After reviewing the latest statistics, I will provide sources of reliable medical information developed specifically for consumers, as well as tips for advising patients about when it’s prudent to share results with their doctors.

What and Where Consumers Search

In January 2013, Pew released the results of a survey of more than 3,000 U.S. adults who used the internet to look for health information. Survey results were publicized in two reports. The first report, titled “Health Online 2013” (pewinternet.org/Reports/2013/Health-online.aspx), revealed that 35% of the
respondents went online to determine what medical condition they or someone else might have. Of those surveyed, 77% started their searches with a search engine, while 13% began their searches at a medical site, such as WebMD. Only 2% started their research at a broad, nonmedical site such as Wikipedia, while 1% said they started their searches on social networking sites such as Facebook. Heath professionals confirmed the condition of “online diagnosers” in 41% of the cases; 18% indicated their doctor disagreed with the self-diagnosis; and 35% said they did not seek a professional opinion.

In the second report, titled “Tracking for Health” (pewinternet.org/Reports/2013/Tracking-for-Health.aspx), nearly 70% of the respondents tracked health indicators or symptoms (i.e., weight, diet, exercise routines, blood pressure) for themselves or someone else. As a result of tracking, 40% of the respondents asked their doctors new questions or sought second opinions, while 34% changed how they were treating their conditions. Those living with chronic conditions, such as high blood pressure, diabetes, asthma, and/or heart disease, were more likely to track their health or symptoms than those with no chronic conditions.

Pew also reported on the use of mobile technology among those searching for health information. In 2012, 31% of cellphone owners used their phones to look for medical information, a rise of 17% from September 2010 (“Mobile Health 2012”; pewinternet.org/Reports/2012/Mobile-Health.aspx). In a separate study, “Mobile Healthcare and Medical App Downloads to Reach 44 Million Next Year,” Juniper Research forecast that mobile healthcare and medical app downloads would reach 44 million in 2012 and 142 million by 2016 (juniperresearch.com/viewpressrelease.php?id=352&pr=275).

Reputable Consumer Medical Information Sites

The current evidence about medical-seeking behavior among consumers demonstrates that patients are becoming more savvy and responsible medical searchers. However, I firmly believe information professionals should continue to provide guidance to patients about reliable healthcare resources. Professional searchers know that websites ending in .gov, .org, and .edu, as well as major medical centers ending in .com, will likely provide the most accurate and up-to-date information about medical conditions and treatments. But you must be very careful that these sites are regularly updating their pages with the latest medical advances, clinical guidelines, and adverse events associated with prescriptions and devices when you recommend them to consumers.

For example, a study titled “Safe Infant Sleep Recommendations on the Internet: Let’s Google It,” published in the December 2012 issue of The Journal of Pediatrics (jpeds.com/article/S0022-3476(12)00628-2/fulltext), found that government websites and websites maintained by national organizations provided the highest level of accuracy (80.9% and 72.6%), while, surprisingly, educational websites often delivered outdated content (only 50.2% accuracy).

The same study found that retail product review sites (such as Amazon) had the lowest level of accuracy (8.5%), followed by blogs (25.7%), websites maintained by individuals (30.3%), news sites (50.9%) (another surprise!), and companies/interest groups (52.4%).

For an excellent overview and guide to determining trustworthy and highly reliable medical information on the internet, purposely developed for the consumer researcher, see the U.S. National Library of Medicine’s (NLM) publication, “Evaluating Health Information” (nlm.nih.gov/medlineplus/evaluatinghealthinformation.html). NLM provides a list of tutorials counseling searchers on how best to conduct “healthy” web searches, as well as links to websites that discuss avoiding scams and misleading health claims.

Another creditable source is from the Medical Library Association (MLA): “Resources for Health Consumers” (mlanet.org/resources/consumr_index.html). Among other gems, MLA lists its top 10 medical sites for consumers (mlanet.org/resources/medspeak/topten.html); a link to MedlinePlus’ directory of U.S. and Canadian medical/health libraries, searchable by state or province (nlm.nih.gov/medlineplus/libraries.html); and “Special Resources for Older Adults” (mlanet.org/resources/consumr_index.html#senior).

Symptom Checkers

If you must look up symptoms, I recommend two sources. The Mayo Clinic’s symptom checker (mayoclinic.com/health/symptom-checker/DS00671) offers predefined lists for searching: Adult Symptoms and Child Symptoms. Or, you can view Symptoms Index, a combined alphabetical listing, and select what you think is your condition (mayoclinic.com/health/symptoms/SymptomIndex). When you click on a symptom, a page pops up that allows you to check off additional factors related to your health. From this page, a list of diseases and conditions appears. When you select any of the conditions, Mayo furnishes a definition of the disease as well as a list of references.

WebMD’s service (symptomchecker.webmd.com/symptoms-a-z) is similar to the Mayo Clinic’s site. There’s a list of Common Symptoms, but also an alphabetical list. When you click on a symptom, you have a further opportunity to add symptoms if you are experiencing more than one. A list of plausible conditions then appears. When you select a condition, WebMD asks you to answer three questions: whether you are seeking information for yourself or someone else, gender, and age. When answered, a separate screen will deliver the following information: an overview of the condition, how common the condition is, risk factors, general treatments available, self-care tips, advice about when to see your doctor, and questions you should ask your physician.

The WebMD resource is more informative than the Mayo Clinic’s site, but I suggest searching both for the unique content each site offers.

Trustworthiness of Physician Reviews/Rankings

If you move to a new area, are unhappy with your current doctor, or are seeking a specialist, it makes sense that you will search any number of physician directories available on the internet, or ask friends or colleagues for their recommendations. Once you have compiled a list of potential physicians, it may be tempting to go to sites that rate doctors (for example, RateMDs.com, Vitals.com, or Healthgrades.com). However, consumers tend to rate products, services, and their doctors when they’re unhappy. It’s highly probable that physician reviews you uncover are going to be negative.

A better approach to evaluate a physician comes from recommendations made by Consumer Reports. Consumer Reports’ “How to Choose a Doctor” suggests three sources for identifying information about a physician (consumerreports.org/cro/2012/12/how-to-choose-a-doctor/index.htm). Consumer Reports also offers guidance about selecting a hospital (consumerreports.org/cro/2013/01/how-to-choose-a-hospital/index.htm), including content about insurance considerations and choosing a doctor with hospital privileges, as well as links to additional sources of hospital information. If you are a subscriber to Consumer Reports, you will have access to the safety ratings of nearly 1,200 hospitals in 44 states.

Administrators in Medicine (docboard.org/aim) provides licensing information and disciplinary actions taken against doctors and furnishes links to state medical boards, where you can look up additional background about the physician of interest.

The American Board of Medical Specialties (www.abms.org) will tell you whether or not the physician of interest is board certified in at least one of 24 approved medical specialties. For those physicians who are American Medical Association members, the AMA’s DoctorFinder service (https://extapps.ama-assn.org/doctorfinder/home.jsp) provides the name of the medical school attended, where residency training took place, hospital admitting privileges, and board certification information.

Patient Support Groups

Patient support groups can be another important resource for medical information, but only if they are used wisely. I was hopeful that I could uncover a national or international directory of such groups, but was disappointed that no reliable source came up in my searching. I did look at the World Health Organization (WHO) list of worldwide patient support groups (who.int/genomics/public/patientsupport/en), in which links are listed under General-Health Related Support Groups and Disease-Specific Support Groups. However, when clicking on a number of the links, I discovered that many of the pages could not be found or led me to odd websites that had no relevance. This discovery confirmed for me that we have to be very careful about evaluating internet sites that are generally deemed reliable and well-respected, making sure that the organization is regularly maintaining and updating its site.

During my quest for reputable patient support group directories, I did come across an excellent guide on the Mayo Clinic site. Titled “Support Groups: Make Connections, Get Help” (mayoclinic.com/health/support-groups/MH00002), this resource advises patients about how to find a group (in person, online, or by telephone), poses a number of questions one should ask before joining a group, and includes a list of “red flags that may signal a problem with a support group.”

I then wandered over to the MedlinePlus site and its Medical Encyclopedia (nlm.nih.gov/medlineplus/ency/article/002150.htm), where links to national organizations and their resources, including patient support groups, are listed by a large number of diseases and conditions.

I was also curious about pharmaceutical company support groups. Manhattan Research released an ePharmaConsumer study, “Strong Demand for Online Pharma Services ‘Beyond the Pill’ Among Online Consumers,” on Jan. 22, 2013 (manhattanresearch.com/News-and-Events/Press-Releases/beyond-the-pill). Nearly 7,000 U.S. adults were surveyed about their use of pharmaceutical company websites. The survey found that 30% of consumers diagnosed with a chronic condition and 38% of caregivers were interested in registering for a patient support program on such sites.

Although I’m skeptical about pharmaceutical company motivations in offering patient support, I wouldn’t necessarily discount the advantages of joining such groups. They can be beneficial to patients who need financial assistance in paying for expensive drugs, can help patients track the progress of their medical conditions, and will frequently offer free access to registered nurses who are available to answer questions. But do be careful about such patient support groups when it’s obvious there’s a financial stake in the drugs being promoting.

Teaching Patients to Search PubMed

It’s worthwhile to teach consumers how to search PubMed (ncbi.nlm.nih.gov/pubmed) for at least two reasons. First, if you need to find a specialist for a difficult-to-treat condition, a search on the disease (limited to literature published in the last few years and by geographic location near where the patient resides, and then sorted by author’s last name) often pulls up a list of physicians who are undertaking innovative and promising research, or who may be conducting treatment clinical trials at major medical centers.

Second, while treatment overview articles may be difficult to read, if you examine the beginning and end of the study where conclusions are detailed, patients can often glean useful information to bring to their doctor. When terminology is an issue, helpful resources are MLA’s “Deciphering Medspeak” brochures (mlanet.org/resources/medspeak/medspeak_plain.html). “Medspeak in Plain Language” (mlanet.org/resources/medspeak/plain-language-final.pdf) displays an alphabetical list of medical terms with easy-to-understand definitions. Also available are “Disease Specific” brochures for breast cancer, diabetes, eye disease, heart disease, HIV-AIDS, and stroke. In addition to definitions for the most common terms, the brochures list websites on which information about each disease may be found.

When to Bring Information to Your Doctor

I do believe it’s sometimes necessary and appropriate to bring information we find on the internet to our doctors. With the amount of medical information available, physicians, especially general practitioners, must find it difficult to keep up with every reported disease development and treatment. But we have to be careful about the sources of information and the amount of downloads we wish to communicate to our physicians.

Social networks definitely have their value, especially for those who have rare or undiagnosed medical conditions (for example, I recently received a news alert about actor Dick Van Dyke tweeting his followers for advice about a difficult-to-diagnose condition he’s experiencing: news.yahoo.com/dick-van-dyke-tweets-help-health-issue-063325918.html.)

Although doctors tend to discount anecdotal information not backed up by reliable, peer-reviewed research or noteworthy research centers, national disease organizations, and government resources, I think it’s reasonable to ask a doctor about a drug, a diagnostic test, a clinical trial, or any other health issue that’s been suggested by searches of social networking channels. Just don’t bring a copy of the online discussion to share with your physician, as you may be dismissed as having consulted unreliable sources that generated unfounded concerns.

Your doctor may be more receptive to engaging in a conversation if you present recent, peer-reviewed overview articles that include the latest treatment guidelines from reputable medical organizations. Since office visits are generally limited to 20 minutes or less (Table 27. Time Spent with Physician: United States, 2010, cdc.gov/nchs/data/ahcd/namcs_summary/2010_namcs_web_tables.pdf), emailing articles ahead of your appointment may be the way to go, giving your physician time to read and absorb the information before meeting with you.

In summary, the literature strongly suggests that consumers are knowledgeable about searching reputable sources of medical information on the internet. At the same time, physicians are removing communication barriers by being more willing to discuss search results brought to them by their patients.


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Stephanie C. Ardito is an independent consultant to the healthcare and pharmaceutical industries. Based in Laurel, Md.

 

Comments? Contact the editors at editors@onlinesearcher.net

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