Untangling The Web: The Internet and Healthcare
Posted on May 30
Medical groups are slowly expanding their Internet services, but patients have been quicker to adopt the technology, finding support groups, treatment information—and sometimes even a diagnosis—online.
Oh, what a tangled web, indeed.
When you talk to doctors about the Internet’s place in health care, even simple questions become complicated. Ask if they use e-mail to communicate with patients, and you get a torrent of information about federal laws that prohibit the exchange of private information over the Net. Ask what they’re doing to enhance Internet services for their patients, and the details may engulf you.
But it’s all good. Though a recent study from Manhattan Research shows that only 8 percent of doctors regularly exchange e-mail with patients, the trend is toward expanding online services for health care customers. In Sacramento, all four medical groups—UC Davis, Kaiser Permanente, Sutter and Catholic Healthcare West (Mercy)—are continuously upgrading their respective websites to provide patients with an ever-widening array of convenience tools, including online appointment scheduling, secure messaging and prescription refills.
But there are still hurdles to be met—the greatest of which, according to local doctors, is fear.
When a health problem comes up, what do you do: Call the doctor, or call on Google? If you’re a regular Internet user, you probably do both.
Sometimes, the Internet is just a place to gather more information. Sometimes it’s a way to connect with others who—like you—have suffered migraines, developed arthritis or don’t know what to do when their child comes home from school with a strange rash. Other times, the Internet can play an even bigger role, helping to diagnose a problem that doctors can’t quite figure out.
Here are the stories of four locals who were determined to find medical help via the Internet—and succeeded.
Therese Procida—Therese Procida was in her early 20s when the warning signs appeared. Intercourse was painful, and she urinated with alarming frequency, running to the bathroom almost every hour. For a while, sheer embarrassment prevented her from seeking help. But the problems persisted, and she could no longer avoid the doctor.
She spent the next 15 years walking through a maze of doctor’s offices, where, instead of getting the diagnosis she sought, she found only frustration.
“I was often told that my problem was probably a urinary tract infection,Â&emdash; says Procida, now 41. “I was given all kinds of advice: Drink more water, drink less water, avoid caffeine. But when I’d go to the lab, guess what? No infection. The doctors would just scratch their heads.Â&emdash; To alleviate the pain Procida experienced during sex, one gynecologist advised her unmarried patient “to go get myself a guy and practice, practice, practice.Â&emdash;
At her wit’s end, Procida decided to conduct her own research on the Internet. Using the Google search engine, she linked together her symptoms and came up with a diagnosis: interstitial cystitis, a bladder and pelvic pain disorder. “One link led to another,Â&emdash; she recalls, “and there I was, right on the page, a classic case. No doctor had ever put it together before.Â&emdash; When she hand-carried the printout to her doctor, “he gave me a look like ‘Here’s another one.’Â&emdash; Ignoring altogether her self-diagnosis, the doctor prescribed pills for an overactive bladder. But the pills didn’t work, and Procida moved on to the next doctor.
That was three years ago. Although doctors have finally confirmed her self-diagnosis—she’s now under the care of a urogynecologist—she continues to rely on the Internet for information and support. “I’ve been able to meet other women online through an interstitial cystitis website [ic-network.com], and it’s opened up a whole new world for me,Â&emdash; says Procida, who lives in Elk Grove and works as a nanny. Other medical sites, such as healthnet.com, have been helpful, too. “These websites have supplied information that my doctor never did,Â&emdash; she says. “After visiting these sites, I know what questions to ask, and it’s no longer such a mystery.Â&emdash;
René Labrado—With fast-failing kidneys and a rapidly weakening condition, René Labrado was running out of time. Then he was saved by the Net.
A victim of Wegener’s granulomatosis, a rare autoimmune disease characterized by the inflammation of blood vessel walls, Labrado initially found good results with Cytoxin, a standard chemotherapy treatment. But the drug ultimately thinned his bladder walls to the extent that he could no longer take it, and his local doctor didn’t know what to do. His disease continued to progress. “My kidneys were one-third failed and rapidly continuing to fail,Â&emdash; says Labrado, 43, an Elk Grove resident. “My doctor put me on some medication, but said he didn’t know how to help me when I could no longer take Cytoxin.Â&emdash; The doctor suggested Stanford Medical Center, but did not recommend a physician.
So Labrado logged on to Stanford Medical Center’s website and began researching physician biographies. One in particular caught his eye: Mark Genovese, M.D., a rheumatologist with a background in internal medicine. “I checked with another doctor, who said, ‘He’s the one to see—if you can get in to see him. Good luck,’Â&emdash; remembers Labrado. It would take three months, he was told, for an appointment with Genovese. “When I told my Sacramento doctor it would take three months, he said, ‘You don’t have three months. You’re lucky to have three weeks.’Â&emdash; Without intervention, Labrado was headed for kidney dialysis.
Desperate, Labrado contacted a Bay Area cousin who works in the medical field, who in turn made a few calls of her own. Labrado soon had his first appointment with Genovese, who prescribed a promising new drug, Enbrel. Within two months, Labrado’s kidneys were approximately 90 percent healed, and his disease went into remission. Despite his busy job as an account manager for Waste Management, Labrado continues to travel to Stanford for monthly appointments with Genovese, whom he describes as “the ultimate savior God doctor.Â&emdash;
But without the Internet, as Labrado points out, none of this would have happened. “The key to this success story is that by researching the Internet, I got to see the doctor who turned everything around. He was the only one who knew about this alternative medication, and without it, who knows where I’d be?Â&emdash;
For more information on Wegener’s granulomatosis, visit wgassociation.org.
Ken Raeburn—As a software engineer, Ken Raeburn (not his real name) spends ample time online. “I turn to the Internet for information on everything,Â&emdash; he says, “from work-related questions to philosophy to mechanic recommendations—you name it.Â&emdash; But this past year, when he experienced his first manic episode, smashing two car windshields and spending a night in jail, the Internet took on a much more critical role in his life.
“When I got home [from jail], I was thinking clearly again, and started searching the Internet for information on psychosis,Â&emdash; says the 30-year-old Raeburn, who had dealt with varying degrees of depression since the age of 10. His Internet search seemed to confirm his suspicions.
After relaying his findings to a psychologist, it took only a few days for a final diagnosis: bipolar (manic depressive) disorder. (His psychologist also explained that he had been delusional, not psychotic.) Since then, Raeburn has used the Internet to deepen his understanding of medications he’s been prescribed, including Depakote (which didn’t work) and Lithium, which has effectively restored his stability. He continues to rely on the Net whenever he needs health-related information, from vasectomy research to the latest on Lasik (eye) surgery.
Raeburn’s reliance on the Internet bears no reflection on the quality of his medical care, he says. Rather, it reflects a desire to take an active role in his own health care by being better informed. “My doctors are fine,Â&emdash; he says, “but I like to know as much as I can about a subject so that I can ask them the right questions and better understand the answers.Â&emdash; He also uses the Internet to compare his experiences with others: When a doctor questioned his reasons for requesting a vasectomy, for example, he went to “Google groupsÂ&emdash; (groups.google.com) and found that a lot of young men had met with similar resistance.
When asked whether he’ll continue to use the Internet for medical help, the Roseville resident quips, “I hope not. But odds are I’ll have other medical issues come up that I need to research, so I’ll probably be using the Net ’til the day I die. There’s even information on that medical problem!Â&emdash;
Sarah Gatlin-Mentze—When her son had his first violent reaction to peanuts at age 1, emergency room doctors had “very little information for us,Â&emdash; says Sarah Gatlin-Mentze. So she took it upon herself to become a food-allergy expert—and has done most of her learning on the Internet. “Our pediatrician was somewhat more helpful than the ER doctors, and the allergist even more informative,Â&emdash; says the 30-year-old divorced mother of two, who lives in Carmichael. “But by far, I have learned the most from my own research and conversations with other parents of anaphylactic children.Â&emdash; Both Isaac, now 7, and little sister Sofia, 5, are peanut-allergic.
Gatlin-Mentze stepped up her Internet research when Isaac was about to enter kindergarten. “I felt I needed as much information as possible to inform his new school about his condition,Â&emdash; she says. A turning point came when Gatlin-Mentze’s research led to the discovery that her son qualifies as disabled under Section 504 of the federal Rehabilitation Act of 1973. “Ultimately, I requested a 504 plan for Isaac, and wrote his plan with the school to document the care he needs to be safe.Â&emdash;
The Internet offers definite advantages over books and other reference materials in researching highly specific conditions such as peanut allergies, Gatlin-Mentze points out. “I have found only a few books specifically about peanut allergies and anaphylaxis, and medical textbooks are not written in a way that helps parents understand how to cope with the daily issues of having a peanut-allergic child,Â&emdash; she says. “The web is the easiest place to find information on the wide variety of topics that food allergies encompass, such as prevention, causes, coping skills for parents and children, and school safety and legal rights.Â&emdash;
Although she says she would not feel comfortable using the Internet to diagnose a medical problem, Gatlin-Mentze, who works as a part-time administrative assistant while attending California State University, Sacramento, has found a wealth of community support online. “I have enjoyed reading message boards on peanutallergy.com, where other parents share their experiences with severe food allergies,Â&emdash; she says. She also is a member of Food Allergy Support of Sacramento (sacfoodallergy.org).
You can never be too careful when it comes to your health—and health-related websites are no exception. “If you go to Google and type in ‘prostate cancer,’ you’ll get a thousand websites to go to,Â&emdash; says Thom Atkins, M.D., of Sutter Medical Foundation. “Some are reliable, others aren’t.Â&emdash; To better ensure reliability, a good rule of thumb is to first check governmental, not-for-profit and hospital websites. Sites sponsored by medical schools, universities or professional societies also are a safe bet.
Here’s a partial list of websites recommended by doctors and patients interviewed for this article:
American Academy of Pediatrics: aap.org
The official website of the American Academy of Pediatrics, this is the place to go for trustworthy medical information from the nation’s leading child care experts. Special feature: A “find a pediatricianÂ&emdash; referral service.
Medscape from WebMD: medscape.com
Intended for physicians and other health professionals, Medscape offers daily medical news, information from more than 50 medical journals and textbooks, conference coverage, specialty-specific homepages and more.
Mayo Clinic: mayoclinic.com
This user-friendly site offers quick, easy access to information about virtually every medical condition under the sun (and probably other planets, too). There’s a first-aid guide, quizzes, and health tools and tips from the world-renowned clinic.
Prevention magazine: prevention.com
With its emphasis on fitness, weight loss, food and nutrition, Prevention.com is a popular stop for those who want to know whether the South Beach Diet really works. (Prevention and The South Beach Diet are both published by Rodale.) But issues of greater substance also are covered here, and there are message boards, health tools and more.
One of the most popular health engines, WebMD provides useful, easy-to-digest information on a wide range of medical conditions, from the common cold to Crohn’s disease. Alerts, newsletters, health quizzes and a “find a physicianÂ&emdash; feature are added bonuses.
For the rest of this story pick up a copy of Sacramento Magazine's September issue.