ALBUQUERQUE, N.M. — For many patients, online sleuthing begins long before a doctor’s diagnosis.
When people dive into online research, inaccurate information can make them more nervous, says Dr. Denise Leonardi, medical director of Lovelace Health Plan and a family physician for 26 years.
“A lot of times people come in saying, ‘I have a headache. I must have a brain tumor,’ ” she says.
Suggested health websites:
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Among her patients who do health research online, about half find trustworthy information, says Dr. Dara Lee, a cardiologist at Presbyterian Heart Group.
Navigating health websites is tough enough, but it is just one piece of the larger puzzle of health literacy. Health literacy refers to how people read, comprehend and act on health information.
People with low health literacy may have trouble understanding what is happening with their bodies, Leonardi says. If they don’t understand their condition, they are unlikely to follow instructions, she says.
When patients do their own research, she does not suggest simply plugging a diagnosis into a search engine. That nets too many sites and blogs with inaccurate information. She also avoids sites with distracting advertisements.
While she applauds patients who seek information on their own, Lee has patients who make health decisions, like buying supplements, based on bad online sources.
“My biggest concern is patients reading something that they think is fact when it is advertising,” she says.
Leonardi recommends “.gov” sites, which she says offer the most unbiased information. She especially likes healthfinder.gov, which culls data from universities, nonprofits and government agencies, and virtualpediatrichospital.org.
Among consumer sites, she likes iTriagehealth.com, a website and free smart phone app that lets people check symptoms and find providers. iTriage has partnered with Lovelace since March.
Although webmd.com is useful, its advertisements can influence content, Lee says.
While government sites offer reliable information, they can be hard to decipher, especially for people with low health literacy, says Audrey Riffenburgh, president of Plain Language Works LLC in Albuquerque, who has worked with agencies like the National Cancer Institute and the Food and Drug Administration to improve health information they provide for the public.
Sites like the Centers for Disease Control and Prevention’s cdc.gov work for professionals or people seeking detailed information, but they can throw off the general public, she says.
For-profit sites are often better at marketing and creating readable content than government sites, although they are less reliable, Riffenburgh says.
Many people struggle with health data. A 2006 report that measured health literacy in 19,000 U.S. adults found that 12 percent of adults were proficient in health literacy.
A proficient score meant they could do tasks like calculate employee health insurance costs for a year, using a table, and define a medical term after searching through a complex document.
Fifty-three percent of adults had intermediate health literacy, 22 percent had basic health literacy and 14 percent had below basic health literacy. Basic literacy meant people could read a pamphlet and explain why someone should be tested for a specific disease even if they have no symptoms.
Engaging people with low health literacy means presenting information differently, not dumbing it down. Riffenburgh suggests teaching a concept first before using a technical term to describe it.
In a back pain tutorial she once saw on a government site, the first three-quarters focused on physiology and anatomy details. That approach may lose people before they reach the end of the tutorial, which did offer ways to take action. It would have been better to “take out the first three-quarters and just say, this is how to prevent back pain,” she says.
Riffenburgh recommends user-friendly sites like NIHseniorhealth.gov and mayoclinic.com. She also likes sites run by reputable nonprofits like the National Lung Association. Nationalhealthcouncil.org has a list of partner agencies.
One challenge for health sites is to understand the difference between “need-to-know” and “nice-to-know” information, she says.
When patient are diagnosed with diabetes, they don’t need to know every detail of the disease right away, she says. They do need to know how to get blood sugar under control.
“Most of the time we’re trying to communicate far more than the average person can take in,” she says.
She wants sites to move away from a “medical model” that starts by describing the disease, who gets it and then gives overly detailed diagnosis and treatment data. Riffenburgh prefers a “patient-centered model” that begins with useful tips and questions like, “Can it be treated?” and “What can I do to lessen pain?”
When people want more details, they can find them on another part of the site.
“There are easy ways to meet the information needs of different people at different education levels,” she says.
In many cases, Lee’s well-educated patients are most susceptible to bad online sources, she says. Patients with low health literacy often don’t seek information online.
“A little knowledge can be a dangerous thing,” she says.
When patients come to see her armed with stacks of paper printed from websites, Leonardi looks through them quickly, then talks to patients about reliable sources. While that takes time, Leonardi says she “loved it when people brought me stuff so I could correct any misinformation.”
If patients do their own research, she suggests that they write specific questions and bring them to a doctor.
When patients do find good sources, it can help them make valuable connections about their health, she says.
“I know the Web has created more hypochondriacs,” she says. “I also think it has helped people pick up on symptoms they didn’t think they had.”