These days, online visitors with health concerns are doing more than entering the name of a condition in a search engine. They're also connecting with millions of other patients.
When Terri Nelson learned she had a large fibroid tumor in her uterus, she went online.
There is nothing new in that, of course. The intrepid and the adept were going to the Web for health information as long ago as the 1980s, well before Google and other search engines made it accessible to a wider audience.
These days, that is pretty much everyone. At least three-quarters of all Internet users look for health information online, according to the Pew Internet and American Life Project; of those with a high-speed connection, 1 in 9 do health research on a typical day.
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And 75 percent of online patients with a chronic problem told the researchers “their last health search affected a decision about how to treat an illness or condition,” according to a Pew Report released last month, “The Engaged E-Patient Population.”
Reliance on the Internet is so prevalent, said the report’s author, Susannah Fox, the associate director at Pew, that “Google is the de facto second opinion” for patients seeking further information after a diagnosis.
But paging Dr. Google can lead patients to miss a rich lode of online resources that may not yield to a simple search. Sometimes just adding a word makes all the difference.
Searching for the name of a certain cancer will bring up the Wikipedia entry and several information sites from major hospitals, drug companies and other providers. Add the word “community” to that search, Fox said, and “it’s like falling into an alternate universe,” filled with sites that connect patients.
As a result, said Dr. Ted Eytan, medical director for delivery-systems operations improvement at the Permanente Federation, “patients aren’t learning from Web sites — they’re learning from each other.” The shift is nothing less than “the democratization of health care,” he went on, adding, “Now you can become a national expert in your bedroom.”
These expanded capabilities allow people to share information easily, upending the top-down path of information between doctors and patients. Today, said Clay Shirky, an expert in the evolving online world, patients are “full-fledged actors in the system.”
And they have plenty of company. Benjamin Heywood, the president of PatientsLikeMe.com, a site that allows patients to track and document their conditions and compare notes with other patients, says that with a growing online population, it becomes possible to research highly specific conditions — say, being a 50-year-old with multiple sclerosis who has leg spasms and is taking a certain combination of drugs.
“We are really about measuring value in the real world,” he said.
Patient sites booming
There are so many sites today, and the landscape is changing so rapidly, that it would take an encyclopedia to list them. But they can be grouped into five broad, often overlapping, categories:
General-interest sites like WebMD (webmd.com), Discovery Health (health.discovery.com) and The New York Times (nytimes.com/health) provide information about disease, news and lifestyle advice, as do medical institutions like the Mayo Clinic (mayoclinic.com).
Medical-research sites offer access to the published work of scientists, studies and a window into continuing research. Examples include PubMed (ncbi.nlm.nih.gov/pubmed) from the National Library of Medicine; clinicaltrials.gov, which tracks federally financed studies; psycinfo (apa.org/psycinfo), with its trove of psychological literature; and the National Center for Complementary and Alternative Medicine (nccam.nih.gov), the government’s registry on alternative-medicine research.
Patient sites for groups and individuals are booming — so much so that they are increasingly used by researchers to find patients for studies. These include the Association of Cancer Online Resources (ACOR) (acor.org) and e-patients (epatients.net), as well as Patients Like Me and Trusera (trusera.com), which provide a bit of Facebook-style social connectivity along with the ability to share their stories in clinical, data-laden detail.
Disease-specific sites focus on a particular condition and are often sponsored by major organizations like the American Heart Association (americanheart.org), the American Cancer Society (cancer.org) and the American Diabetes Association (diabetes.org). But smaller groups can put together extensive resources as well, with sites like breastcancer.org and Diabetes Mine (diabetesmine.com), which calls itself the “all things diabetes blog.”
Web tools: These sites help people manage their conditions — for example, sugarstats.com for diabetes, Destination Rx (drx.com) for comparing drug prices, and YourDiseaseRisk.com, a service of the Washington University School of Medicine that helps patients determine their risk for various problems.
One woman’s experience
All of the changes in the Internet and the ways people use it help explain why Terri Nelson’s experience in 2008 is very different from what it might have been in 1998.
Nelson, who lives in Portland, received her diagnosis Aug. 11. She had two weeks before a follow-up visit with her surgeon. Nelson and her husband, Stewart Loving-Gibbard, used the time to research fibroids and the most common treatments.
Nelson started with straightforward information-gathering, checking the articles on fibroid tumors at sites that included the Mayo Clinic and PubMed. Then she reached out to the community of people with fibroid tumors at ACOR and other sites. (“Those had to be evaluated carefully,” she said, “to find the nuggets of valid information in the vast sea of online hypochondria.”)
Having spent many years trolling roisterous online forums, however, she had developed that essential Internet tool: what might be called a personal baby/bathwater algorithm that helps people to sift through mountains of information to find what is relevant.
She found a blog for the layperson, “Inquisitive Geek With Fibroid Tumors,” that featured wide-ranging discussions and, she said, “was really useful” and specific to her condition.
By the time she went into the consultation with her surgeon, she knew that the old-school way of dealing with her grapefruit-size tumor would probably have been a hysterectomy. But that can impair sexual response, among other side effects; a growing number of doctors prefer abdominal myomectomy, which leaves the uterus intact. The surgeon laid out the options and recommended that approach as well, confirming Nelson’s research.
During the surgery and recovery, Loving-Gibbard used Twitter, the short-message communication service, to keep friends and family up on his wife’s condition.
Twittering an operation might seem frivolous, but when Nelson’s teeth began chattering after the procedure, a friend following the updates suggested it could be a potentially hazardous side effect, tardive dyskinesia, that can occur with one of the antinausea drugs Nelson was taking. Loving-Gibbard, who had been researching that very point when the message came in, was able to get the medication changed.
After the procedure, they posted photographs of the surgery and tumor on the photo-sharing site Flickr.com under the heading “Extracting a Pound of Flesh” (flickr.com/photos/littlecrumb/sets/72157607218121 711/). They are not for the squeamish, but as Nelson said, “My husband’s family is mostly doctors, so they were all interested in seeing the photos, and most of my friends are morbidly fascinated.”
As patients go online to share information and discuss their care, they are becoming something more: consumers.
Amy Tenderich, the creator of Diabetes Mine, has turned her site into a community for diabetes patients and an information clearinghouse for treatments and gadgets — even going so far as to publish an open letter last year to Steve Jobs, the Apple Computer co-founder, challenging him to design medical devices like insulin pumps that are as sleek and easy to use as an iPod.
Dr. Talmadge E. King Jr., chairman of the department of medicine at the University of California, San Francisco, says doctors are coming around to seeing the value of a patient who has gone online for information.
Patients in his pulmonary practice, he said, sometimes come into his office holding medical-journal articles he has written “and quiz me.” The better-educated patient might stump the doctor, he went on, but these days “it’s much easier for me to look them straight in the eye and say, ‘I don’t know’ ” and promise to get back to them.
“Patients know you’re not all-knowing,” he said. “They’re not upset by that.”
Can online information be trusted? The answer, increasingly, is yes. In a study earlier this year, a report in the journal Cancer looked at 343 Web pages about breast cancer that came up in online searches. The researchers found 41 inaccurate statements on 18 sites — an error rate of 5.2 percent.
Sites promoting alternative medicine were 15 times as likely to offer false or misleading health information as those sites that promoted conventional medicine, the study found.
Matthew Holt, who with Indu Subaiya created a conference, Health 2.0, that showcases innovation, says the information marketplace can correct itself.
“In the end,” he said, “the more people you have in the conversation, the better information drives out the worse information.”