Using the Internet to Research Health

[JenS]

July 17, 2003

 

THE INFORMED PATIENT

By LAURA LANDRO

 

Internet Use for Medical Data Shifts Doctor-Patient Roles

 

When Amy Wallens Green began feeling extreme sensitivity to noise in her ear, her doctors could find nothing wrong on examination, and no solutions to help ease the problem, which kept her up nights. It was only after coming across an online community of fellow sufferers that she learned about tinnitus, a condition that produces an uncomfortable roaring, buzzing, hissing, or ringing in the ears or inside the head.

 

Ms. Green is one of a growing number of Americans who find information about a medical condition online, often before their own doctors diagnose them. It's a situation that is empowering patients, and sometimes strains the doctor-patient relationship. Indeed, one message that comes across clearly from Web-savvy patients: Don't be intimidated, even if you encounter resistance or hostility from physicians who caution you to avoid online information.

 

According to a survey released by the Pew Charitable Trust's Internet and American Life Project, 80% of adult Internet users have searched for at least one of 16 major health topics online, compared with 62% who said they had looked for health and medical information online just three years ago. Among those "health seekers," fully 58% say they will first go online when they next need reliable health information, compared with 35% who say their first move would be to contact a medical professional. For the Pew survey, Princeton Survey Research Associates conducted phone interviews with 2,038 adults, and conducted a separate online survey with multiple-choice questions that drew more than 2,000 responses.

 

A separate study released this week by Solucient LLC, an Evanston, Ill., health-care information firm, found that 45% of adults turn to the Internet for numerous health-related purposes, including research, medication purchases, or details on hospitals and health plans. That survey of 25,000 adults found that only 16% of them refer to their doctors for health information.

 

Clearly, consumers have good reason to take advantage of the Web as a health resource, especially now that they face higher out-of-pocket payments for care. Pew survey respondents said the Internet makes them feel more independent of their doctors, empowers them to ask more informed questions during appointments, and reduces fear of the unknown.

 

While 73% of the respondents in the Pew survey said the Web has improved the health information and services they receive, it has also led to different -- and not always better -- relationships with their doctors.

 

"Patients are making use of these high-quality resources on the Internet that the pros don't understand," says Tom Ferguson, the physician and online health expert who helped Pew to design the survey, recruit respondents and interpret the data. He says online support groups and communities are among the most powerful force reshaping health care today. In many cases, he says, patients in communication with others on support groups "are avoiding medical mistakes, realizing they are getting bad advice, and going to other doctors."

 

By going online to gather testimony from fellow support-group patients, one patient in the survey suggests, you may be able to persuade a doubtful doctor that you aren't the only one with the odd symptoms you are having.

 

Dr. Ferguson advises patients to seek out support communities through search engines and groups like the Association of Cancer Online Resources (www.acor.org1). But he says more research needs to be done on their role: "There are these complex communications networks focusing on health that we know very little about, and they need to be studied more."

 

Virginia Hetrick, a cancer survivor involved in an online community for inflammatory breast cancer, a rare form of the disease, says online support groups offer the most promise for patients with uncommon diseases or hard-to-diagnose symptoms. "Very frequently, for patients and caregivers, the Internet will have the broadest approach to issues arising from rare and orphaned diseases," says Ms. Hetrick, who teaches information technology topics at universities in Southern California. "The combined wisdom of these patients and caregivers is frequently deeper than a single medical professional can possibly develop in the time available," unless his or her entire career has been devoted to the disease.

 

Of course, many physicians may fear, rightly, that patients will rely on each other to self-diagnose in cases where medical expertise is important. Check medical advice with your doctor. And not everyone is comfortable with support groups. Some Pew survey respondents were wary of quacks and misinformation on discussion forums, and don't want to disclose their personal medical issues with strangers.

 

"Sharing personal medical and health information across the Internet requires a certain leap of faith, or at least a strong sense of privacy and trust," write Susannah Fox and Deborah Fallows, the researchers who prepared the survey report for Pew.

 

Generally patients who tap into the Internet are enthusiastic about the benefits. Ms. Wallens Green, an associate director of licensing and business affairs at PBS Consumer Products, says that online tinnitus groups gave advice on how to reduce the reverberations in her ear and the best earplugs to help her get some sleep. She agrees that consumers "shouldn't self-diagnose through the Internet," and should use online searches to "enhance" their communication with doctors. Still, she adds, "it's comforting to know that in the blink of an eye and with a little filtering, I can locate a community online who will provide me with resources and support."

 

E-mail Informedpatient@wsj.com

 

URL for this article:

http://online.wsj.com/article/0,,SB1058385...4497200,00.html

 

Hyperlinks in this Article:

(1) http://www.acor.org

(2) mailto:Informedpatient@wsj.com

 

Updated July 17, 2003

 

Copyright 2003 Dow Jones & Company, Inc. All Rights Reserved

[Stayce]

Thanks for posting this!

 

It is a great article and so true!

 

If only more doctors would go online and do some research to find out about hard to diagnose problems.

[~SuziQ~]

A very good article, Jen.  Think about it...  where would many of us be if we hadn't been searching the web?  If we have learned nothing else, we have learned to be aggressive about our health concerns.  

 

There is still an element of concern for many doctors when it comes to their patients surfing the web.  There is a lot of misinformation out there.  

 

We try to be so careful with what we post...  so as not to have anyone misconstrue what we say when we try to help others.  We must be doing something right...  as there are several physicans who recommend this site to their patients.

[~MaryO~]

A few years ago, Forbes magazine had this article on internet health sites, too http://www.forbes.com/best/2001/0625/026.html

 

The whole text, plus cover picture is available at http://www.cushings-help.com/forbes.htm ... because this site was a part of the article

[JenS]

I thought it hit the nail on the head and thought it good to see that another reputable source re-confirmed what we know and experience.  I benefit from this site - it makes me fight for more testing (saliva tests are next) and know what I am in for.

Thanks so much, Mary O and all those that participate!

Jen