Using the internet for health information is not the exception

New concepts need gimmicks. Proven concepts do not.

The phenomenon of using the internet to gather and share health information is now mainstream. It’s time to change how we talk about it, revising and maybe even retiring certain terms.

Some history to build our case:

In 1998, only about one-third of American adults had access to the internet. Harris Interactive published pioneering research about how internet users gather health information online, dubbing these 54 million people “cyberchondriacs.”

In 1999, Tom Ferguson, MD, came up with the term “e-patients” to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. He began work on a white paper, commissioned by the Robert Wood Johnson Foundation, to describe this new development.

In 2000, Lee Rainie and I wrote the Pew Internet Project’s first health report, The Online Health Care Revolution, using the phrase “health seeker” to describe someone who used the internet for health information.

Just to remind you of the sea change we’ve been through, in the year 2000:

  • 46% of American adults had access to the internet (now: 74%)
  • 5% of U.S. households had broadband connections (now: 66%)
  • 25% of American adults looked online for health information (now: 61%)

Over the last 10 years, using the internet to get health information has become an assumption, not an exception. The repetition of this finding from every sector — for-profit, non-profit, academic, government — has made it boring.

But I draw inspiration from Clay Shirky, who has said, “Tools don’t get socially interesting until they get technologically boring.”

Talking about people Googling for health info is boring. Talking about how health is becoming social online is interesting — even exciting. People are sharing and critiquing what they find. If they don’t find what they need, they are creating it.

In short, the data – Pew Internet’s and others’ — are quite clear that the online health revolution is over and that use of digital tools in tackling health problems is the natural state of affairs. Many of those who are involved in the effort to understand this shift believe that now is the time to build the new civilization.  Those who have studied the data and watched the struggle to call this phenomenon by an appropriate name think that means calling people who are part of this widespread phenomenon what they are: People.  They believe that the older labels like our “health seekers,” Harris Interactive’s “cyberchondriacs” and even Tom Ferguson’s “e-patients” now are less than helpful and accurate. They believe the right word is simply “people.”

For more background on this discussion, please see:

Brian Reid’s post: It’s Time to Retire ‘Cyberchondriacs’

Jen McCabe’s post: The Redefining Patienthood Project Launches – Aims, Goals, and Many, Many Questions Ahead

Kevin Kruse’s post: What do you mean, “e-patient”?

Amy Tenderich’s post: “Patients” versus “Health Care Consumers”? Both, If You Ask Me

Dave deBronkart’s post: When the Patient is a Yahoo

My posts: Googlers vs. e-patients vs. cyberchondriacs and Cyberchondria: Old Wine in New Bottles

And from a different sector, also struggling with terms as they re-invent themselves:

Alex Howard: On Language: Putting Government 2.0 in Context

Susannah Fox is Associate Director, Digital Strategy at Pew Research Center’s Internet and American Life Project, and blogs at e-patients.net.

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  • http://www.wishfulthinkinginmedicaleducation.blogspot.com Anne Marie Cunningham

    Thanks Susannah,
    How very true. So how do we make sure that good information rises through search? Should that be a priority, especially for googling symptoms?
    I’ve made a short screencast about this here:
    http://wishfulthinkinginmedicaleducation.blogspot.com/2010/10/should-nhs-be-on-yahoo-answers.html
    Do health professionals have a duty to seek out the spaces that the public ask these questions, such as Yahoo Answers? Or at least to correct misinformation that they come across?
    AM

    • http://www.pewinternet.org Susannah Fox

      Anne Marie,

      As always, your comments are spot on and your accent is one I’d listen to all day :)

      Thanks so much for sharing this commentary.

  • Annie Stith

    Hey, Susannah!

    Y’know, thinking about it, it strikes me that use the web for health care info differently than I used to.

    I more and more skip the searches (google, bing, yahoo, etc.) and go straight to a source such as WebMD’s symptom checker system. But because a lot of the other content on WebMD is Pharma funded, I prefer to gather info elsewhere.

    That’s when I’ll use an engine like Google, but not for a general search. I use Google’s “definition” function, using the possible prognosis. Sometimes I limit the search to only .edu domains because I trust them more.

    Sometimes I skip the whole search process and go directly to a trusted source like nih.gov, CDC.gov or the Mayo clinic site or MedLinePlus(whose addesses eludes me at this moment).

    When I do go to a search engine, it’s with a pretty defined search term such as “BipoLar Disorder Support Group” or “Fibromyalgia Clinical Trials.”

    In my fantasies (ahhh…. fantasies!), I’d like some kind of Wiki that could be locked by my doc and myself that would contain various different sections.

    A section like my official Dx’s with clickable links to definitions. Another section could contain my current meds and other conventional treatments… because I’m SO tired of filling them out on forms.

    There could be a separate section for doctors notes, and another for the results of any labwork, x-rays, and other tests. And, of course, a place for patient comments and reactions.

    Going to a specialist could be as simple as giving them the passcode to my Wiki, which could then be changed when the specialist’s work is completed. But they could start their own section for their notes before they’re locked out.

    I’d also like a section for the support groups I’ve found or participate in, along with other alternative or supportive treatments that happen outside the doc’s office , like home exercises, or changes to my diet, so my doc knows what I’m doing to give his/her conventional treatment the best chance of working.

    Some pages only a doc could edit. Some only I could edit. There could be an email link for my doc so all I have to do is click to pull up a form to fill out and send when I have a question or concern.

    I have two docs who work together on my bloodwork so that they each get the results no matter who orders the tests. It would work well for them to simply have all lab results in a single place, rather than havig to remember to fill out the lab form with a request to fax results to the other doc.

    Best of all, going to the ER would be a snap. I could give my code to my trusted “ICE” (In Case of Emergency) contact, which is prominent on my cell phone and in my wallet.

    As for how to “label” who we’ve become? Personally, I dislike labels unless they’re self-imposed.

    But, I guess with how I use the web regarding health care now is that I’m more of a “health care data miner” who’d much rather be a “WikiPatient.”

    Just my perspective. (And good to read you again, Susannah!)

    Annie

  • http://www.pewinternet.org Susannah Fox

    Hi Annie!

    I love your vision of the future — and you’re not alone. This line of thinking was present at the Connected Health Symposium in Boston this week. E-patient Dave started a thread about it here if you want to take a look:

    http://e-patients.net/archives/2010/10/why-cant-medical-records-have-basic-wikipedia-features.html

    Also, I had the great pleasure of finally meeting Eric Horvitz of Microsoft for the first time. He wrote the “Cyberchondria” article which defined it as the “escalation of medical concerns in web search” – see: http://research.microsoft.com/apps/pubs/default.aspx?id=76529 – confining the term to a description of the outliers, not the norm.

  • http://www.aloe-vera.org David

    Like many people, I get much of my health and wellness information from the internet. But there are so many fraudulent sources on the internet the reader has to beware of which sites are genuine and informative and which are just opinion and without medical fact.

  • Reta Russell Houghton

    I had to become an engaged, internet using E-patient to protect myself and improve my health. I must share that I would be in the dark about my chronic pain disorder (CRPS/RSD) if I had not gone to the internet. In fact, the surgeon that diagnosed me (unofficially) told me to go to the internet. My doctors have shared so little information, in fact none of them has taken the time to discuss my disorder to prepare me for my life with this progressive neurological disorder. The one piece of literature I received was terrible.

    I have learned to read and read and read some more. You start noticing treads in the standard line of thought and treatments. If I do find something new, I can digress onto that tangent to check out this information. I tend to go to the sites dedicated to my disorder because I have seen bad information on my disorder on sites like Mayo and WebMD. They are good for general knowledge on common health issues, but not when you have what is considered a rare disorder.

    I have shared my information with my doctors and was even able to suggest a treatment that one my doctors agreed to try. It provided me with a great deal of pain relief and improved my quality of life. I have only had one doctor tell me not to use the internet and he was in the wrong on the topic and refused to listen to me about a drug interaction. It took another doctor telling yes it was possible and mostly likely what happened.

    I do maintain a PHR and in the process of trying to find an electronic version to maintain. A thumb drive would be so much easier than that 4 inch binder I now carry to every appointment. I share my information with all my doctors and keep them up today on my lab work and anything else done. I believe this has prevented any duplicate of testing. I still have problems getting this information from some doctors, but I am persistent and will sit and wait for the copies to be made.

    One thing not listed here is patient forums. I will tell you they have been a life saver for me. I was able to ask questions about things said that did not make sense to me and about tests and procedures to better prepare me for them. Since I know about the test/procedure and how much it can hurt or any other side effects, I am a much more relaxed patient. I have now become a researcher of a sort, helping others to find answers to their questions. Once I find an answer, I give the questioner the tools to help them find it themselves. You must teach them to fish or they will be dependent for life. I have learned so very much in my work.

    I believe education is the key to patients managing their health better. I tell people you must learn the nature of the beast you live with, in order to learn how to control the beast.
    Reta Russell Houghton

    • http://www.pewinternet.org Susannah Fox

      Reta,

      Thank you so much for your comment, especially your closing thought: “you must learn the nature of the beast you live with, in order to learn how to control the beast.”

      I’d wager that goes for chronic pain – or any health condition – as well as for many other situations in life. Why not study what has come before so you can better anticipate the future? That’s the basis of my work at the Pew Research Center and what I hope to contribute to the public conversation: data about the social impact of the internet.

      Thank you also for bringing up patient forums. You might be interested in some of my previous research into their role in health and health care. Please see, for example, this report:

      Chronic Disease and the Internet
      http://www.pewinternet.org/Reports/2010/Chronic-Disease.aspx

      Best wishes,
      Susannah

  • Annie Stith

    Hey, Reta!

    I can so relate to parts of what you’ve shared.

    I was diagnosed with Fibromyalgia in 1995–when only a Rheumatologist could do an “official” diagnosis. It took appointments with three different Rheumatologists and my PCP including on the referral form that he believed I had FM before I got Dx’d.

    When he Dx’d me, the Rheumatologist gave me a tri-fold brochure on FM. It included the “fact” that most doctors believed FM was a “trailer park Dx,” meaning it was the considered to be the latest means for women to be lazy.

    It was only through the web that I was able to get any helpful information, which I shared with my PCP so that he could treat me.

    My ex has RSD, so I understand a lIttle bit about your pain. I hope you continue to find treatments that work well for you.

    Annie

  • Reta Russell Houghton

    Susannah,
    I had read that report. And , I agree that once online we are more likely to participate more because we have the greater need. Doctors have 15 minutes to do everything in needed in an appointment, what suffers is the conversation and the education. And often patients do not know what to ask. They sit stunned by the news and not able to process any thoughts. they walk out the door and forget all that was said.

    I am a firm believer in education programs for patients and caregivers, similar to the programs used for diabetics. In a 4 hour class a wide variety of topics can be covered and many questions can shared. The topics could range from a discussion of the disorder, the future, medical treatments, medications, alternative medicine, nutrition, adapting your home and even things like intimacy. Patients could be taught to recognize signs of depression which often accompany most chronic disorders. I think everyone would benefit. Patients would have a better understanding of their illness, the effect on their lives and how to manage it. Doctors get the benefit of a better educated patient that has a better understanding of their disorder and can participate in their health care.
    Reta
    What many people do not understand with a chronic illness/disorder is the goal is not to get well but to manage your disorder because it does not have a cure. Couple that with the fact that most chronic illness are invisible, and we are forced to deal with people that do not believe we are ill.

  • Reta Russell Houghton

    Annie,
    I understand your plight with fibro. It is very sad when you can’t even get a doctor to believe you are in pain.

    Sometimes I think the if the disease doesn’t kill us, the cure surely will.
    Reta

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