Skip to content
  • About
  • Contact
  • Contribute
  • What Physicians Say
  • My Book
  • Careers
  • Podcast
  • Speaking
KevinMD.com — Social media's leading physician voice
  • All
  • Physician
  • Burnout
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • All
  • Physician
  • Burnout
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
    • All
    • Physician
    • Burnout
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • About
    • Contact
    • Contribute
    • What Physicians Say
    • My Book
    • Careers
    • Podcast
    • Speaking
KevinMD.com — Social media's leading physician voice
  • All
  • Physician
  • Burnout
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
    • All
    • Physician
    • Burnout
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • About
    • Contact
    • Contribute
    • What Physicians Say
    • My Book
    • Careers
    • Podcast
    • Speaking
  • About Kevin Pho, MD, Founder of KevinMD
  • Aging and dementia: what physicians say, in their own words
  • Artificial intelligence: what physicians say, in their own words
  • Be heard on social media’s leading physician voice
  • Cancer: what physicians say, in their own words
  • Children’s health: what pediatricians say, in their own words
  • Contact Kevin
  • COVID-19: what physicians wrote as it happened
  • Custom enhanced author page pricing
  • Diabetes and obesity: what physicians say, in their own words
  • Direct primary care: what physicians say, in their own words
  • DMCA Policy
  • End of life: what physicians say, in their own words
  • Establishing, Managing, and Protecting Your Online Reputation: A Social Media Guide for Physicians and Medical Practices
  • GLP-1 drugs: what physicians say about Ozempic and its successors, in their own words
  • Heart disease: what physicians say, in their own words
  • Immigration and medicine: what physicians say about immigrant doctors and immigrant patients, in their own words
  • KevinMD influencer opportunities
  • Medical errors: what physicians say, in their own words
  • Medical ethics: what physicians say, in their own words
  • Medical malpractice: what physicians say, in their own words
  • Medical school: what students and physicians say, in their own words
  • Mental health: what psychiatrists and physicians say, in their own words
  • Nursing: what nurses and physicians say, in their own words
  • Opinion and commentary by KevinMD
  • Opioids: what physicians and pain patients say, in their own words
  • Physician burnout speakers to keynote your conference
  • Physician burnout: what physicians say, in their own words
  • Physician Coaching by KevinMD
  • Physician keynote speaker: Kevin Pho, MD
  • Physician personal finance: what physicians say about their own money, in their own words
  • Physician Speaking by KevinMD: a boutique speakers bureau
  • Physician suicide: what physicians say, in their own words
  • Physicians and administrators: what physicians say about who runs medicine, in their own words
  • Primary care physician in Nashua, NH | Kevin Pho, MD
  • Primary care: what physicians say, in their own words
  • Prior authorization: what physicians say, in their own words
  • Privacy Policy
  • Private equity and corporate medicine: what physicians say, in their own words
  • Race and medicine: what physicians say, in their own words
  • Recommended services by KevinMD
  • Residency: what residents and attendings say, in their own words
  • Scope of practice: what physicians, nurse practitioners, and PAs say, in their own words
  • Subscribe to the KevinMD enhanced author page
  • Subscribe to the newsletter
  • Surgeons and surgery: what surgeons say, in their own words
  • Take-home messages: what physicians say when asked to leave one
  • Terms of Use Agreement
  • Thank you for subscribing to KevinMD
  • Thank you for upgrading to the KevinMD enhanced author page
  • The electronic health record: what physicians say, in their own words
  • Vaccines: what physicians say, in their own words
  • Violence against health care workers: what physicians and nurses say, in their own words
  • What physicians say: the KevinMD records
  • Women in medicine: what women physicians say, in their own words
  • Women’s health: what physicians say, in their own words

Tips for your online health information search

Toni Bernhard, JD
Patient
March 22, 2012
Share
Tweet
Share

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.

ADVERTISEMENT

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 Caregivers. Her 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.

Prev

A medical student reflects on the clinical year transition

March 21, 2012 Kevin 0
…
Next

The secret to successful aging

March 22, 2012 Kevin 0
…

Tagged as: Patients

< Previous Post
A medical student reflects on the clinical year transition
Next Post >
The secret to successful aging

 

ADVERTISEMENT

More by Toni Bernhard, JD

  • 4 things the chronically ill wish others understood

    Toni Bernhard, JD
  • 5 hidden consequences of chronic pain

    Toni Bernhard, JD
  • 10 challenges faced by those with chronic pain and illness

    Toni Bernhard, JD

More in Patient

  • Patient communication ends when the patient understands

    Diane Bruno
  • Book publishing scams took $7,500 from me by wire transfer

    Richard A. Lawhern, PhD
  • Cosmetic dentistry abroad is not about the lowest price

    Anna Estrin
  • There’s no one to drive your patient home

    Denise Reich
  • Dying is a selfish business

    Nancie Wiseman Attwater
  • A story of a good death

    Carol Ewig
  • Most Popular

  • Past Week

    • Retirement isn’t the end of medicine, it’s a second act [PODCAST]

      The Podcast by KevinMD | Podcast
    • The conflict of interest that discloses as nothing

      Martha Rosenberg | Medications
    • 4 fibromyalgia myths the current evidence doesn’t support

      Kayvan Haddadan, MD | Conditions and Diseases
    • Why exhaustion can make you see things that aren’t there [PODCAST]

      The Podcast by KevinMD | Podcast
    • AI governance in health care has to reach the exam room

      Amanda Heidemann, MD | Health Technology
    • The Pennsylvania measles outbreak and the cost of forgetting

      Christine King, CRNA | Conditions and Diseases
  • Past 6 Months

    • Why CDC opioid guidelines get the overdose data wrong

      Richard A. Lawhern, PhD | Conditions and Diseases
    • Retirement isn’t the end of medicine, it’s a second act [PODCAST]

      The Podcast by KevinMD | Podcast
    • Sensory processing in autism and the brain’s volume control

      Josette Pelatan, PhD | Conditions and Diseases
    • What maternity care deserts cost a town

      Manisha Kaliaperumal | Health Policy
    • Why medicine needs a national physician license now

      Vaishali Popat, MD, MPH | Physician
    • A cold cost $945. The cost of primary care is broken.

      Susan Newman, MD | Physician
  • Recent Posts

    • Why exhaustion can make you see things that aren’t there [PODCAST]

      The Podcast by KevinMD | Podcast
    • 3 reforms to counter wellness influencers in practice

      Farid Sabet-Sharghi, MD | Physician
    • Shift work and circadian rhythms shape the 24/7 workplace

      Deepak Gupta, MD | Conditions and Diseases
    • Paid for twice

      Physicians paid for G2211 twice. Most never bill it.

      Michael Duben, MD | Physician Finance
    • The next child

      Medicaid managed care and the case for mutual stewardship

      Steven Merahn, MD | Health Policy
    • Choosing a limb lengthening surgeon requires accountability

      Hrayr Basmajian, MD | Physician

Subscribe to KevinMD and never miss a story!

Get free updates delivered free to your inbox.


Find jobs at
Careers by KevinMD.com

Search thousands of physician, PA, NP, and CRNA jobs now.

Learn more

View 19 Comments >

Founded in 2004 by Kevin Pho, MD, KevinMD.com is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Social

  • Like on Facebook
  • Follow on Twitter
  • Connect on Linkedin
  • Subscribe on Youtube
  • Instagram

ADVERTISEMENT

  • Most Popular

  • Past Week

    • Retirement isn’t the end of medicine, it’s a second act [PODCAST]

      The Podcast by KevinMD | Podcast
    • The conflict of interest that discloses as nothing

      Martha Rosenberg | Medications
    • 4 fibromyalgia myths the current evidence doesn’t support

      Kayvan Haddadan, MD | Conditions and Diseases
    • Why exhaustion can make you see things that aren’t there [PODCAST]

      The Podcast by KevinMD | Podcast
    • AI governance in health care has to reach the exam room

      Amanda Heidemann, MD | Health Technology
    • The Pennsylvania measles outbreak and the cost of forgetting

      Christine King, CRNA | Conditions and Diseases
  • Past 6 Months

    • Why CDC opioid guidelines get the overdose data wrong

      Richard A. Lawhern, PhD | Conditions and Diseases
    • Retirement isn’t the end of medicine, it’s a second act [PODCAST]

      The Podcast by KevinMD | Podcast
    • Sensory processing in autism and the brain’s volume control

      Josette Pelatan, PhD | Conditions and Diseases
    • What maternity care deserts cost a town

      Manisha Kaliaperumal | Health Policy
    • Why medicine needs a national physician license now

      Vaishali Popat, MD, MPH | Physician
    • A cold cost $945. The cost of primary care is broken.

      Susan Newman, MD | Physician
  • Recent Posts

    • Why exhaustion can make you see things that aren’t there [PODCAST]

      The Podcast by KevinMD | Podcast
    • 3 reforms to counter wellness influencers in practice

      Farid Sabet-Sharghi, MD | Physician
    • Shift work and circadian rhythms shape the 24/7 workplace

      Deepak Gupta, MD | Conditions and Diseases
    • Paid for twice

      Physicians paid for G2211 twice. Most never bill it.

      Michael Duben, MD | Physician Finance
    • The next child

      Medicaid managed care and the case for mutual stewardship

      Steven Merahn, MD | Health Policy
    • Choosing a limb lengthening surgeon requires accountability

      Hrayr Basmajian, MD | Physician

Copyright © 2026 KevinMD.com | Powered by Astra WordPress Theme

  • Terms of Use Agreement
  • Privacy Policy
  • DMCA Policy
All Content © KevinMD, LLC
Site by Outthink Group

Tips for your online health information search
19 comments

Comments are moderated before they are published. Please read the comment policy.

Loading Comments...