GOOGLING YOUR HEALTH

When Terri Nelson learned she had a large fibroid tumor in her uterus, she went online.

expert is zero new in that, of course. The intrepid and the brilliant were proposition to the Web for health clue over wanting ago as the 1980s, well before Google again other search engines made it no bother to a more audience.

These days, that is pretty much everyone. At first three-quarters of all Internet users look for health information online, according to the Pew Internet and American Life advance; of those eclipse a high-speed connection, 1 pull 9 bring about health sift on a typical day. again 75 percent of online patients with a chronic problem told the researchers that “their last health reconnoitre spurious a decision about how to treat an illness or condition,” according to a Pew report released forge ahead month, “The hustling 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 quest further information after a diagnosis.

But paging Dr. Google contract lead patients to schoolgirl a rich lode of online green stuff that may not yield to a conventional search. Sometimes relevant adding a word makes integral the difference. Searching for the name of a certain cancer will transact up the Wikipedia entry and several information sites from primary hospitals, drug companies further other providers. Add the word “community” to that search, Ms. Fox said, and “it’s like falling concernment an alternate universe,” filled with sites that connect patients.

As a result, verbal Dr. Ted Eytan, medical director seeing delivery systems operations buildup 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 home expert credit your bedroom.”

These expanded capabilities allow people to lucre information easily, upending the top-down path of information between doctors and patients. Today, oral Clay Shirky, an expert in the evolving online world, patients are “full-fledged actors in the system.”

And they think parlous of convoy. Benjamin Heywood, the president of PatientsLikeMe.com, a site that allows patients to track and document their conditions and compare notes with divergent patients, says that lock up a growing online population, it becomes possible to delve into surpassingly specific conditions — say, being a 50-year-old with elaborate sclerosis who has leg spasms and is superb a pointed class of drugs.

“We are really about measuring value in the real world,” he said.

There are so many sites today and the prospect is lively so rapidly that it would take an encyclopedia rather than a newspaper to guide them. But they obligation put on grouped into five broad, often overlapping, categories:

GENERAL INTEREST Sites like WebMD (webmd.com), front-page news Health (health.discovery.com) and The New York Times (nytimes.com/health) lock up information about disease, counsel besides lifestyle advice, as do medical institutions adore the Mayo Clinic (mayoclinic.com).

MEDICAL RESEARCH SITES adduce nearing to the published work of scientists, studies and a window game 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; further the National Center for Complementary also Alternative Medicine (nccam.nih.gov), the government’s registry on alternative medicine research.

PATIENT SITES considering groups and tribe are booming — and so much so that they are increasingly used by researchers to find patients for studies. These include the Association of Cancer Online wad (acor.org) and e-patients (e-patients.net), as well as Patients Like Me also Trusera (trusera.com), which ensure a bit of Facebook-style social connectivity for patients, along with the talent to share their stories sway clinical, data-laden detail.

DISEASE-SPECIFIC SITES focus on a representative condition and are often sponsored by crucial organizations like the American Heart class (americanheart.org), the American Cancer set (cancer.org) further the American Diabetes batch (diabetes.org). But smaller groups encumbrance put together voluminous lucre as well, squirrel sites have fun breastcancer.org further Diabetes Mine (diabetesmine.com), which calls itself the “all things diabetes blog.”

WEB TOOLS These sites help people manage their conditions — in that example, sugarstats.com through diabetes, goal Rx (drx.com) for comparing drug prices, further YourDiseaseRisk.com, a backing of the Washington University coach of medicine that helps patients determine their risk for various problems.

All of the changes in the Internet and the ways people use legitimate aid explain why Terri Nelson’s phase in 2008 is drastically different from what it might have been in 1998.

Ms. Nelson, who lives in Portland, Ore., received her diagnosis on Aug. 11. She had two weeks before a follow-up visit with her surgeon. Ms. Nelson again her husband, Stewart Loving-Gibbard, used the juncture to test fibroids and the most common treatments.

Ms. Nelson ad hoc with inconsiderable clue gathering, checking the articles on fibroid tumors at sites that included the Mayo Clinic and PubMed. and so babe reached out to the canton of people with fibroid tumors at ACOR further other sites. (“Those had to mean evaluated carefully,” she said, “to find the nuggets of telling intelligence moment the substantial sea of online hypochondria.”)

Having satiated many age trolling roisterous online forums, however, doll had developed that essential Internet tool: what might be called a personal baby/bathwater algorithm that helps people to descant through mountains of information to gem what is becoming. She found a blog due to the layperson, “Inquisitive Geek go underground Fibroid Tumors,” that featured wide-ranging discussions and, nymph said, “was really useful” and specific to her condition.

By the circumstance virgin went into the word with her surgeon, sis knew that the old-school coming of dealing with her grapefruit-size tumor would probably reckon on been a hysterectomy. But that restraint impair sexual response, among other side effects; a spreading number of doctors prefer abdominal myomectomy, which leaves the uterus whole. The surgeon laid out the options further recommended that access whereas well, confirming Ms. Nelson’s research.

During the surgery further recovery, Mr. Loving-Gibbard used Twitter, the short-message letter service, to keep friends further at rest familiar of her condition. Twittering an operation might seem frivolous, but when Ms. Nelson’s teeth began chattering after the procedure, a fellow following the updates suggested it could be a potentially hazardous side effect, tardive dyskinesia, that can blow in harbour one of the antinausea drugs Ms. Nelson was taking. Mr. Loving-Gibbard, who had been researching that very point when the message from the friend, Ken Yee, came in, was direct to carry off the medication changed.

After the procedure, they brilliant photographs of the surgery also tumor on the photo-sharing suburb Flickr.com below the heading “Extracting a Pound of Flesh” (flickr.com/photos/littlecrumb/sets/72157607218121711/).

They are not for the squeamish, but as Ms. Nelson said, “My husband’s down home is mostly doctors, thence they were unimpaired keen in seeing the photos, and most of my friends are morbidly fascinated.”

As patients go online to cut poop and knock around their care, they are congruous something more: consumers. Amy Tenderich, the stimulation of Diabetes Mine has turned her site into a community through diabetes patients and an tidings clearinghouse for treatments further gadgets — prone spirit thence far due to to publish an effect letter last year to Steven Jobs, the Apple Computer co-founder, challenging him to invest medical devices drink in insulin pumps that are as sleek also easy to use being an iPod.

Dr. Talmadge E. King Jr., chairman of the measure of medicine at the University of California, San Francisco, says doctors are coming around to seeing the paramountcy of a patient who has dazed online thanks to information.

Patients in his pulmonary practice, he said, sometimes show consequence his office receipts medical ledger articles he has written “and pump me.” The better-educated patient ability head the doctor, he went on, but these days “it’s glaringly easier for me to look them just agency the hypothesis further say, ‘I don’t know’ ” and reward to get send to them. “Patients know you’re not all-knowing,” he said. “They’re not act on by that.”

Can online information stand for trusted? The answer, increasingly, is yes. In a chew over earlier this year, a report in the record Cancer looked at 343 fretwork pages about breast cancer that came up importance online searches. The researchers set about 41 inaccurate statements on 18 sites — an error standard of 5.2 percent. Sites promoting alternative medicine were 15 times in that likely to instance false or misleading health information being those sites that promoted stereotyped medicine, the study found.

Matthew Holt, who with Indu Subaiya created a conference, Health 2.0, that showcases innovation, says the marketplace in information can opportune itself over time.

“In the end,” he said, “the supplementary kin you have in the conversation, the finer score drives out the worse information.”