Tips for your online health information search

Last year, I was referred to two different dermatologists because I have two skin conditions and each dermatologist is an expert on one of them. (I know how fortunate I am to have access to this level of medical care.) Something amusing happened at each visit.

After examining me and deciding on a course of treatment, the first dermatologist said, “When you get home, don’t look up this condition on the Web because you’ll get too much information and you’ll become confused and scared.”

After examining me and deciding on a course of treatment, the second dermatologist said, “When you get home, look this condition up on the Web because you’ll want to learn everything you can about it.”

Argh! What’s a patient to do?

This patient looked up both conditions on the Web and learned all about them. I’ve been using the Internet for over ten years to research my illness and to connect with other people who are chronically ill and in pain. I’ve learned that one must tread carefully in this vast terrain. The breadth of information can be overwhelming. Some of it is accurate and highly useful, but some of it can be downright dangerous to rely on. Here are my tips for wise use of the Internet:

When researching your condition, look for .org or .edu as opposed to .com at the end of a Web address.

When you conduct a search for information on your condition, you’re likely to get millions of results. Start with websites that end in .org or .edu. The former take you to non-profit associations whose mission is to educate the public about your particular condition and to advocate on your behalf. An address ending in org. is not a guarantee that the site is reliable, so you’ll have to investigate further, but the .org usually means that it’s a non-profit, unlike most sites ending in .com. (An exception is mayoclinic.com, an excellent non-profit site. There are also several reliable .com sites that cover health issues in general, such as KevinMD.com, where you can find informative and thought-provoking articles from both healthcare providers and patients.)

Web addresses ending in .edu take you to medical sites that are maintained by universities. I’ve found them to be objective and reliable sources of information. As for sites ending in .gov, such as the NIH or the CDC, I think they’re a mixed bag. On the one hand, they’re non-profit, which is good. On the other hand, some of the agencies have fixed views on certain conditions and illnesses and so are slow to update information for the public, even when the latest research indicates they should be doing so.

Be wary of websites that claim to cure your chronic pain or illness if you’ll just fork over your money.

Anyone can create a website, set up a payment method, and ask for your credit card number. Anyone. Treatments-for-sale can be packaged to sound very seductive, but If there were a “cure” for your condition, the odds are high that those .org or .edu. websites would be recommending it or at least discussing it. In addition, be highly suspicious of “patient testimonials” because you have no way to verify their accuracy. They may simply be made up. Also watch out for phrases such as: “secret formula,” “what your doctor doesn’t want you to know,” “miracle,” “works overnight.” People are spending thousands of dollars on false cures. I know because I’ve done it. I was particularly vulnerable when I was first diagnosed because I was desperate, making me an easy target for miracle cures. Please be wary.

If you find an article on your condition, check out who authored it.

Make sure it’s not someone who gets paid money to get your attention. This group can include medical writers who are paid to produce “scare you to death” articles for popular blogs and news-type websites. Scary headlines, reports about bizarre (and invariably, rare) medical conditions, and deadly drug reactions bring in readers. No matter how impressive the author’s credentials look, before you rely on an article, look for a “second opinion.” See if what it claims has been reported elsewhere on the Internet by staff writers for reliable news organizations or by those .org associations.

Be cautious before relying on other people’s experiences with various treatments.

This brings me to the subject of the various types of online support groups: chat rooms, listserves, and patient forums or message boards. These can be valuable sources of information and support, particularly when you’re first diagnosed. But, as for looking at these websites for feedback on treatments, I’ve learned that for every prescription medication, dietary supplement, or alternative medicine modality I’ve tried, I can find people who say it worked, people who say it didn’t work, and people who say it made them worse. Speaking personally, I’ve stopped consulting these types of sites for feedback on treatments I’m undergoing, even though I know the people who are participating have the best of intentions.

About six years ago, under close doctor supervision, I was prescribed a powerful and potentially toxic anti-viral. I was told about potential side-effects and even had weekly blood tests to check for any problems. Nevertheless, after starting the medication, I spent hours every day hanging out on message boards and forums, reading posts from people about their reactions to this drug. After about three weeks, utterly spent—mentally and physically—from this relentless searching and exhausting reading, I forced myself to stop because I realized what I already knew: some people said it worked, some people said it didn’t work, and some people said it made them worse. The only new thing I learned was to be scared—scared of rare reactions that would have become apparent to me without the Internet and that I would have immediately called my doctor about anyway.

I can see exceptions to my personal rule. (I always taught my law students that all good rules have exceptions.) For example, if I were undergoing a widely-used, well-established treatment, such as chemotherapy, it could be helpful to check with other patients to see what to expect. There may be side-effects that my doctor, who might be focused on the big picture, wouldn’t mention, like deep fatigue and brain fog.

Find community and support on the Internet.

I’ve said this in earlier pieces: if one is to be sick, it’s fortunate to be sick in the Internet Age. This illness would be so much more difficult to live with if I couldn’t connect with others online who understand my struggles. Internet friends are the only source of support for many people. There are social networking sites like Facebook and Twitter, and there are blogs written by people who are similarly sick. In addition, there are online communities devoted to those with chronic pain or illness, such as Jenni Prokopy’s Chronic Babe, where members can create a personal page and then find others who share their medical problems or their non-health interests, such as music or photography.

In my experience, the Internet’s hidden treasure for those suffering from chronic pain and illness is the Facebook Group in which people can share in a private setting. Many people have told me that these Groups brought them out of the painful isolation they’d been forced into due to their medical problems.

And, finally … enter the doctor.

If you find information you want to take to your doctor, I suggest you put on your diplomat’s hat! If you challenge your doctor, he or she is likely to think, “I’ve had years and years of training and experience and this patient thinks the Internet has the answers!” Your goal is to make your doctor feel that you’re sharing this information because the two of you are partners in your healthcare. So, rather than starting the dialogue with something like this:

“My Internet research shows that…” or

“I found an article on the Internet that says…”

Try this:

“Doctor, I found this study that I thought might interest you…” or

“I know a lot of your patients must bring you material to read from the Internet, but this particular article appears to be relevant to my condition and I’d love to get your feedback on it.”

You get the picture: The patient as diplomat!

The Internet’s greatest strength—you can find almost anything online—is its greatest weakness. That’s why I suggest treading carefully. Be a consumer not a patient. Consider the way you “research and compare” before making a big purchase. If you bring that same rigorous analysis to the Internet, this valuable resource can go a long way toward easing the burden of living with chronic pain and illness.

Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversHer forthcoming book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at her self-titled site, Toni Bernhard.

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  • arastel8

    This is a great article! Thank you so much for talking about the emotional toll of searching for information on the internet. Even as a medical librarian I find myself scaring myself with other patients experiences and “diagnosing” myself with something scarier than what I really had…

    One thing to add, many hospitals have a librarian skilled in finding health information geared specifically to the patient in non-physician reading levels.

    Also, .gov is another type of web address to look for. medlineplus.gov is a great free website that pulls other reliable sources from the internet into one place. It also has videos and great diagrams.

  • Sarah Wells

    I suppose some patients are ninnies but a reasonably literate person can mamage perfectly well.   Some end up being quite able to contribute to their own care – if a patient becomes more adept at managing his  Iindividual situation, its because he cares more about his individual situation and can devote all his energies to patient one and his progress.

    Use such patients as an opportunity, because those patients aren’t ever going away now.   Knowledge isn’t hidden in the stacks somewhere.  

    • http://www.howtobesick.com Toni Bernhard

      Hi Sarah,

      I appreciate your suggestion that the medical community use informed patients as an opportunity. Yes, knowledge isn’t hidden in the stacks somewhere. Thanks for reading and commenting.

      Warmly,
      Toni

  • http://www.howtobesick.com Toni Bernhard

    It’s comforting to know that a medical librarian can still get caught up in scary Internet stories! 

    Great idea to consult the librarian at a hospital. I mention .gov sites. Medlineplus is a good one. Thanks for reading and commenting.

    All my best,
    Toni

    • http://twitter.com/lzipperer Lorri Zipperer

      Every hospital doesn’t have a degreed-librarian. Even if they do — there may not be a way for patients and families to directly interface with them. Its an unfortunate reality that is becoming more common due to cut-backs in hospital library services. All is not lost, however. Assistance may also be available at a public library (if the expertise is not in-house, the public librarian should be able to help the patient/family connect with a knowledgable librarian), university or college library– especially those with nursing of health sciences schools.

  • Anonymous

     Let me third the idea of visiting a medical librarian. As a medical reference librarian in training, I can attest that there are many very smart and qualified people that are more than happy to help patients learn more about medical issues. The more difficult the question, the better we like it!

    • http://www.howtobesick.com Toni Bernhard

      Thanks, MedLib! I’ve learned something new by writing this piece! Warmly, Toni

  • http://twitter.com/pamressler Pam Ressler

    Excellent suggestions, Toni.  The access to information on the internet has opened up a huge knowledge base — but with the volume of information comes determining validity and credibility.  This is where patient-provider relationship and collaboration is essential. An informed patient becomes an expert in their disease but collaboration with a health care provider is necessary to help make the most appropriate choices for the individual given the wealth of information to which we all now have easy access.

    • http://www.howtobesick.com Toni Bernhard

      Hi Pam. Yes, the Internet is a mixed blessing. I think my doctor and I have benefitted from having access to this information. He likes me to bring him articles I find, but that’s partly because he knows I’ll be highly selective. I’m lucky to have him. Thanks for reading and commenting.

  • http://chirorehab.net/ Robert W Ferguson, DC, FIAMA

    There is a  lot of bad information out there. Everybody has to be careful. Evan well meaning professionals sometimes can be wrong

    • http://www.howtobesick.com Toni Bernhard

      Yes, there’s a lot of bad information out there! Thanks for reading and commenting, Robert.

  • http://pulse.yahoo.com/_CSPWC7IMWR3A7S2ERVE2QWUYLM Janice Flahiff

    Online patient/consumer health information library guides are other great places to start. 
    These guides contain consumer/patient health links to government (.gov), organization (.org), and education (.edu) sources.
    The sites are selected and often annotated by medical, academic, and other qualified librarians (including those working in public libraries(.

    A few examples
    –Consumer/Patient Health Information (Duke University Medical Center Library) 
        http://guides.mclibrary.duke.edu/consumerhealth

    –Consumer Health (University of Iowa Libraries)
       http://guides.lib.uiowa.edu/content.php?pid=9716&sid=772233

    – Consumer Health (University of Toledo)
       http://libguides.utoledo.edu/ConsumerHealth

    The above were found through the Google search
          Libguides consumer health
    Libguides is a commerical software program many libraries use to organize information.

  • Anonymous

    Is it too much to expect that diplomacy and respect are a two-way street?  I for one am tired of being treated in a condescending manner about my own reseach when I have a Master’s degree in my field and am from a family with 15 medical professionals!

    • http://www.howtobesick.com Toni Bernhard

      I too would hope that diplomacy would be a two-way street! Thanks for reading and commenting. Warmly, Toni

      • Anonymous

        I think that all of us need to be MORE assertive with our doctors rather than less. There is a major problem with the whole medical industry that will have to be delt with eventually if we are going to have better outcomes and reduce costs’

  • http://www.howtobesick.com Toni Bernhard

    Thanks so much, Janice. I appreciate that you took the time to add to my article! Warmly, Toni

  • http://twitter.com/Krisinsight Kris Peterson

    I appreciate the advice but as a blogger with a .com in my URL I disagree with the .org and .edu being the only reliable sources (the exceptions mentioned being Mayo.com and KevinMD.com). My .com site provides lots of reliable research that I have done and performed on myself. Research on rats is wonderful but humans are not rats and it is only with trying these medical ideas on ourselves that we find the solution that works. I sell no cures nor tell a person what to do, I simply let people know what has worked for me and my thyroid disease and I have found other such sites amazingly healing.

  • Anonymous

    Interesting that you write about this difference in viewpoints of the physicians.  Let me tell you about mine.

    I was diagnosed with LCIS (lobular carcinoma in situ) of the breast, one of the earliest stages.  When given the diagnosis by my breast specialist, she warned me NOT to go to the internet as there was a lot of false information.  Several times in the next year or so, she encouraged me to have not only a mastectomy but even proposed bilateral mastectomy–even though there had only been one other case of breast cancer in my family.

    I went to another breast specialist for a second opinion/consultation.  Of course, this specialist did NOT recommend a mastectomy at all.  This second specialist offered me a previously prepared list of reliable websites regarding breast cancer and suggested that I visit them.

    I transferred my care to the second specialist immediately.  Twelve years later, I remain breast cancer free with both my breasts in tact.

    I believe in transparency in my health care and open discussion with my physicians regarding my care. I find the internet a great tool to this end.

  • http://twitter.com/starpath Dallas Knight

    Toni, for your dermatology patient information, go to http://dermnetnz.org/ which is a mature site informed by dermatologists.
    Also see the FA4CT algorithm: a  model and tool for consumers to assess and filter health information on the Internet. http://tinyurl.com/c7tj5cmThere are many many valuable patient information sites from reputable organisations. Health information searchers need guidence to find these sites.