With the ever-increasing presence of computers and the Internet in the home, the availability of information on every topic a person could dream of is ballooning. And one of the most common search subjects on the vast World Wide Web is health, as the vast majority of U.S. users of the Internet use their computers to seek out information on health-related topics.
A tangled web of health information
In fact, a 2006 survey by the Pew Internet & American Life Project revealed that 80 percent of U.S. Internet users — about 113 million adults — had searched the Internet for information on at least one of 17 health topics. On a given day, 8 million people — about 7 percent of Internet users — looked for health-related information online.
Their searches range from getting general information about a disease afflicting a loved-one or celebrity to looking up symptoms they’re experiencing in an effort to determine their source.
But where are they looking for this information, and are they using reliable sources to get it?
That’s an increasing concern for medical authorities and governmental officials, as the proliferation of medical information has been just as quick as that on most topics addressed on the Internet, and not all information being disseminated has the stamp of approval of well-regarded medical establishments.
That is all the more worrisome as many of those finding health information on the Internet say it has had a major impact on them.
According to the Pew survey, 53 percent of health-information seekers reported that their most recent health information session had some kind of impact on how they take care of themselves or care for someone else: 42 percent described it as a minor impact and 11 percent described it as a major impact.
Those surveyed indicated that the impact of the online health information was most deeply felt by Internet users who had received a serious diagnosis or experienced a health crisis in the past year, either their own or that of someone close to them. Some 14 percent of these hard-hit health seekers said their last information search had a major impact, compared with 7 percent of health seekers who had not received a diagnosis or dealt with a health crisis in the past year.
What these people did with the information they found varied, but many — and, in some cases, most — of them reported that they it had affected their health decision making or interaction with their doctor:
• 58 percent said the information affected a decision about how to treat an illness or condition;
• 55 said the information changed their overall approach to maintaining their health or the health of someone they help take care of;
• 54 percent said the information led them to ask a doctor new questions or to get a second opinion from another doctor;
• 44 percent said the information changed the way they thought about diet, exercise or stress management;
• 39 percent said the information changed the way they cope with a chronic condition or manage pain; and
• 35 percent said the information affected a decision about whether to see a doctor.
In many cases, these newly informed decisions can be a plus, causing a person to see a doctor when they would not have, bring up a possible alternative treatment that could benefit them or just take better care of themselves. But with a wealth of anecdotal information, outdated data, selective references and Web sites out to promote a product or service, there is also a risk that bad information will lead to adverse impacts.
The Pew study indicated that just 25 percent of the people who searched the Internet for health information took the time to verify the source and date of the information each time they searched, or even most of the time. That leaves about 85 million Americans searching the Internet for health information — much of which they will follow to one degree or another — without verifying its reliability.
These factors have led to a push by governmental and medical establishments to advise Internet users on how to find reliable health information on the Web and how to weed out the unreliable from the trustworthy.
Sources you can trust
The National Cancer Institute now offers a fact sheet on how to evaluate health information on the Internet (www.cancer.gov/ cancertopics/factsheet/information/internet). Its key points:
• Any Web site should make it easy for people to learn who is responsible for the site and its information. Who runs the site? Who pays for it? What is its purpose? Is there some benefit for the person or group other than providing unbiased, reliable medical information?
• If the person or organization in charge of the Web site did not write the material, the original source should be clearly identified. Is the material reviewed before it is published? Is the source reliable? Is it current?
• Health-related Web sites should give information about the medical credentials of the people who prepare or review the material on the site. You want your doctor to have a diploma on their wall. Why not the people who give you medical advice on the Internet?
• Any Web site that asks users for personal information should explain exactly what the site will and will not do with that information. Are they asking you to subscribe or selling your information to other businesses? Is their business information harvesting or providing reliable information to you?
• The Federal Trade Commission and the Food and Drug Administration are government agencies that help protect consumers from false or misleading health claims on the Internet. They are the places to go when you see claims of cure-alls and other unsubstantiated medical claims, to verify information and to report problems.
The National Networks of Libraries of Medicine offer a similar tip sheet at nnlm.gov/outreach/consumer/evalsite.html, complete with additional resources to help you evaluate the health information you find online.
So, where can you go for medical information that you can trust? Here’s a list of top sites to look at when you’re searching for medical information, as well as sites noted by government agencies and medical organizations for their reliability:
• CAPHIS, the Consumer and Patient Health Information Section, is a section of the Medical Library Association and offers a subdivided list (caphis.mlanet.org/
consumer/) of top medical Web sites for general health, women’s health, men’s health, parenting and kids, seniors’ health, drug information and more. This is a great starting point if you want to make sure you’re looking at solid information and avoiding unreliable sites.
• HealthFinder.gov (www.healthfinder. gov/) is a Web site by the U.S. Department of Health and Human services and offers everything from the latest health news to prevention and wellness information, links to governmental agencies dealing with health, online calculators and quizzes and a drug interaction checker. They also offer newsletters and an RSS feed if you’re trying to keep up to date on health information.
• Medline Plus (www.nlm.nih.gov/medlineplus/) is a site from the U.S. National Library of Medicine and the National Institutes of Health. There’s health news, a search function that pulls from well-regarded sites, drug information, a medical encyclopedia and dictionary, and information on local resources, clinical trials, tutorials and more.
• The National Health Information Center (NHIC) offers a great tool if you don’t go online often: a list of toll-free numbers to call for medical information (www.health.
gov/nhic/pubs/2008tollfreenumbers/tollfreenumbers1.htm). These range from recorded health information messages to counseling and referrals.
• The Centers for Disease Control (http://www.cdc.gov/) are another great starting point for research into most health-related issues. There are links to popular searches, targeted current information on hot topics of the moment, list of CDC goals and projects, and tons of data and statistics.
• FamilyDoctor.org (familydoctor.org) is presented by the American Academy of Family Physicians and targets family and child health, including men’s health, women’s health and seniors’ health, as well as things such as fall prevention. They’ll help you find a doctor, track your weight or blood pressure, look up medical terms and more. A “Smart Patient Guide” offers tips on how to be a proactive patient or advocate for the healthcare of a family member.
• The National Institutes of Health (health.nih.gov/) offer similar clearinghouses of information as many other government sites. They also offer MP3-format audio reports, a newsletter and information on the latest research.
• InteliHealth (www.intelihealth.com) comes to the Web from insurance company Aetna, but in partnership with Harvard Medical School. It gets high marks for reliability despite its commercial affiliation. The site offers free health-related e-mails, a drug and term search, health tips, an “Ask the Expert” feature, interactive tools and quizzes, and health topics and search features.
• The Medical Library Association offers its own Top 10 list of useful medical sites for consumers at www.mlanet.org/resources/
medspeak/topten.html. These are major sites with stellar reputations, including the Mayo Clinic’s site and the CDC.
• More than a nod on this list to a home-state favorite: KidsHealth.org (www.kidshealth.org/), which is produced by the Nemours Foundation, founded by Alfred I. DuPont, and has a children’s hospital in Wilmington. This site appears on many lists of top health information sites, particularly when it comes to kids.
What I especially like about it is that its entry page provides different entryways for parents, teens and kids, so the information being provided is targeted at each age group and aims to present the information in a suitable way for them. It also covers things beyond purely medical conditions, such as a topic about what parents can do about bullying.
• The Mayo Clinic (www.mayoclinic.com/) also appears on most of the top lists for reliable health-related Web sites. The setup of this site is particularly nice, as it is organized with tabs for particular types of uses, such as “Live Well” (resources to help you and your family stay well) and “Manage a Condition” (information on chronic diseases and conditions), as well as hot topics, a search, e-mail newsletter and more.
Now, there are surely millions more sites out there that offer a wide variety of health information. Many of the sites are well done and offer solid information, including sites that focus on or advocate for specific conditions.
Even those sites that are lacking in good source material as defined by many of the above watchdog sites can offer useful information if you’re looking for support, personal experiences and recommendations that can’t be defined so neatly by scientific studies and generalized articles.
The key for using all these sites in an informed manner is to look on them as sources for information to discuss with your physician, to help them keep informed and to help you be informed as a consumer of medical services.
Already many of us are relying on the Internet to help us make major decisions regarding our health and that of our families. The next step is to integrate the availability of information on the Internet with the trust one engenders in one’s healthcare provider, to take a holistic approach to awareness as healthcare consumers and create the best of both worlds.
Information is key. And assuring you act on good information is the bottom line.