January 15, 2014

The social life of health information

The online health community and the media lit up this week in a debate over whether it’s tasteful, appropriate or even beneficial to discuss one’s health problems with the world on social media.

While there’s been some discussion of the topic before, the news this week involved two prominent journalists who raised questions about one woman’s public approach to her life with stage IV breast cancer. Lisa Bonchek Adams, a 44-year-old mother of three, has lived with cancer for six years and developed a following among others diagnosed with cancer as well as clinicians, journalists and people who simply appreciate her perspectives.

Her tweets and blog posts address topics such as her approach to talking to her kids about her illness, her medical treatments and thoughts about facing the end of life. The Guardian’s Emma Keller wrote a column stating that “Adams was dying out loud.” A few days later, The New York Times’ Bill Keller (who is Emma’s husband) wrote a column relating his father-in-law’s “calm death” from cancer and asked whether Adams’ public updates about her health are the right approach.

We’ll leave the taste debate aside and instead look at the data about how many Americans gather and share health information online and whether there are any known benefits to doing so.

The Pew Research Center has studied the social life of health information since 2000 when we first measured how many people use online resources to find information or connect with others about health conditions.

Our latest national survey on the topic finds that seven-in-ten (72%) adult internet users say they have searched online for information about a range of health issues, the most popular being specific diseases and treatments. One-in-four (26%) adult internet users say they have read or watched someone else’s health experience about health or medical issues in the past 12 months. And 16% of adult internet users in the U.S. have gone online in the past 12 months to find others who share the same health concerns.

FT_health115

Caregivers and those living with chronic conditions, such as diabetes, heart disease and cancer, are more likely than other internet users to do all of these things. Clinicians are still the top source of health information in the U.S., according to the same survey, but online information, curated by peers, is a significant supplement.

The small group of people who use the internet and other online tools to connect with others are highly engaged. Of the 8% of internet users who say they have posted a health-related question or comment online within the past year, four-in-10 said they were sharing their personal health experience.

Our research shows that patients and caregivers have critical health information — about themselves, about each other, about treatments — and they want to share what they know to help other people. Technology helps to surface and organize that knowledge to make it useful for as many people as possible.

Some observers may think it is odd, but this online sharing could be the modern version of an age-old instinct to seek solace among peers. As Thomas Jefferson wrote in 1786, “Who then can so softly bind up the wound of another as he who has felt the same wound himself?”

Indeed, many clinicians recommend group support as part of a treatment plan for a wide range of issues, from weight loss to the management of chronic and life-changing diagnoses, such as cancer. Academic publication is a slow process, however, and the internet is evolving quickly, so there are relatively few studies measuring the effectiveness of social media.

However, Twitter, Facebook, blogs, and other platforms seem uniquely suited to adapt to the changing needs of people living with chronic health conditions, particularly as patients move from the shock of a new diagnosis to long-term management. This is particularly true for people facing a rare disease diagnosis. A new research paper released earlier this month studied parents of children with rare chronic diseases and found that social media in particular provided an effective support network. This echoes our own findings and adds to the pile of evidence showing the psychosocial benefits of connecting online.

As one mother whose son has Canavan disease wrote in a book about rare-disease caregivers: “Before the internet, we were alone. In 1996, when Jacob was born, there was no search engine to offer me any information. Today, because of social media, we are connected with many people who are fighting the same fight as we are. The internet has made our small disease larger and we are able to educate many more people now.”

PatientsLikeMe, a health data-sharing platform, is one leader in the new field of using the internet to help patients, caregivers and researchers connect online. One study, published in Epilepsy & Behavior, showed that, prior to using the site, one-third of respondents (30%) did not know anyone else with epilepsy with whom they could talk. Now, two-thirds (63%) of those people had at least one other person with whom they could consult to gain a better understanding of seizures and learn about symptoms or treatments. Another study, published in the Journal of Medical Internet Research, found that 41% of HIV patients who use the site said they had reduced their own risky behaviors thanks to online support and education.

Smoking cessation is another example of a health intervention that works well when people support each other online.  Members of an online support group like QuitNet stick around to help newcomers because they want to give back what they received when they were starting out.

In the end, this episode illustrates the confluence of two powerful forces:

  • an ancient instinct to seek and share advice about health
  • a newfound ability to do so at internet speed and at internet scale.

It may not be for everyone, but our research shows that the social life of health information is a durable trend.

Topics: Health, Social Media

  1. Photo of Susannah Fox

    is an Associate Director at the Pew Research Center’s Internet & American Life Project.

Leave a Comment

Or

All comments must follow the Pew Research comment policy and will be moderated before posting.

24 Comments

  1. Carolyn Thomas7 months ago

    “Numbers don’t lie” – except when they do. A niggling problem with the survey stats (most survey stats, not just Pew’s) is the lack of “why?” specifics that could actually help us make the numbers meaningful.

    For example, when the numbers tell us that “seven-in-ten (72%) adult internet users say they have searched online for information about a range of health issues,” we don’t know how many members of this group have searched once and only once in the past XX months, or how many are online every day, several times a day as active users. Thus the bloated media headlines that make things appear as they may not be at all, because every person who does a one-time Google search (like checking out the definition of Lady Sybil’s tragic eclampsia diagnosis on Downtown Abbey) may also be captured in such numbers, too.

    Active members of online support communities may tend to really, really like their groups, yet their membership numbers are in fact tiny, tiny, tiny as Gadi would say – in a way that’s puzzling to those who say they gain so much from the “psychosocial benefits of sharing online.” We know, for example, there are over 42 million North American women living with heart disease, yet only 13,000 of them participate in the largest online community, Inspire’s WomenHeart site.

    The “how many?” question is not nearly as compelling as the “why?” in those stats.

    Reply
  2. Gadi Ben-Yehuda7 months ago

    This article, coupled with “Few Americans track their weight, diet or exercise online” suggests a paradox that finds its truth in no less an authority than Jorge Borges.

    In the first article, you wrote that Among the 6-in-10 Americans who say they track their weight, diet or exercise routine, 9% say they use online or app tools.” So 9 percent of 60 percent of Americans use online or app tools to track their weight, or roughly 5.5 percent of all Americans. (Granted, that’s still more than 15 million people, but as a percentage: tiny, tiny, tiny.)

    But in the article above,, the picture becomes more complicated. You relate that “Our . . . survey . . . finds that seven-in-ten (72%) adult internet users say they have searched online for information about a range of health issues, the most popular being specific diseases and treatments. One-in-four (26%) adult internet users say they have read or watched someone else’s health experience about health or medical issues in the past 12 months. And 16% of adult internet users in the U.S. have gone online in the past 12 months to find others who share the same health concerns.”

    So why are people looking for health stories—presumably ones that at least reference health data—while at the same time they are reluctant to use online tools to track the data that undergirds those stories?

    To answer that question, one should read a master of stories, Jorge Luis Borges. In “The Secret Miracle,” Borges entered the mind of an author who, facing a firing squad, composed his greatest work–a play that would never be performed, much less published. Of the protagonist, considering the insufficiency of his literary output, Borges writes “like every writer, he measured other writer’s virtues by what they had accomplished, yet asked that others measure him by he planned or intended someday to do.”

    That is, the writer judged others by their data, but himself by his story.

    The popular saying is that “numbers don’t lie,” but it can be countered with the equally-popular “there are three kinds of lies: lies, damned lies, and statistics.” When it comes to our health, it is one thing to share with friends the gestalt of our workouts, of our health treatments, our diets, or the activities of our daily lives as we live them: with intention and purpose and selectively edited for our social media feeds. It is completely another to share the data captured by body- and activity-trackers, like FitBit and Aria. The numbers don’t lie—our weight is our weight, and the number of reps we can do is finite and fathomable. But they also don’t tell the whole story, and they can be skewed, especially in aggregate.

    Many articles and blog posts discuss the benefits of exercising with a partner, and conjoining activity-trackers to social media. Chief among the benefits is that other people keep us honest. When we set goals and share them with other people, they very fact that they know encourages us to attain them. When our data is open, we are accountable.

    And that accountability can become uncomfortable, even if it is beneficial.

    Reply
    1. Susannah Fox7 months ago

      Thank you for writing this lovely essay!

      My eyes are continually opened to the possibility of both data and stories by the people I meet in my fieldwork. Moms and dads who are desperately trying to figure out what symptoms they can track so that their child’s health can be better managed — or so they can simply get a diagnosis. People who share their personal stories in photos, videos, blogs, hoping to figure out what’s happening with their bodies and maybe use what they find to help their clinicians see the shape of the whole puzzle, not just test results or what can be learned in a short appointment.

      Something that gets lost sometimes is that people often collect data or write stories for no one but themselves. Others write and share with friends, as Regina Holliday wrote in another comment. People who stumble on those stories need to be respectful of the context.

      Thank you again for sparking new thoughts for me!

      Reply
  3. Amy Price @ ThinkWell7 months ago

    Social media can give people the opportunity to share the health news once for all. It frees from the need to repeat endlessly what can not be changed and gives those who are reading time to find a quality response.

    People that you may hardly know can come up with an unexpected brilliant resource or response.

    For good news, no one is left out as the news is as close as the media used and people can leave comments, ignore, communicate on a deeper level, it is their choice.

    Since humans and communication are fallible so will be the media they use. If we choose to be kind and think of how we would take the comments that we are about to make if they were directed at us is important. I try to picture the person(s) in front of me and put myself in their shoes.

    Hearing how someone else made it through a rough patch and the path they took helps and so does knowing there are others who are not handling it so great and being beatne down by the ravages of illness and hurting is not who we are it is what we are dealing with

    Reply
    1. Susannah Fox7 months ago

      Thanks, Amy! Your line about “people that you may hardly know” reminds me of a discussion that is happening over on another post of mine:

      The network is our superpower
      susannahfox.com/2014/01/20/super…

      The connection can happen online or off, but when it does, it can make a significant difference — that “unexpected brilliant resource” you mention.

      Reply
  4. Courtney Larned7 months ago

    I have a rare neuro disorder that I don’t necessarily want to talk about with the masses. However, I’ve connected with amazing people, many who suffer way more than I do, on a locked down Facebook group; having a place to vent, ask questions, connect, provide support, and sometimes, just whine, has been a huge factor in coping with emotions around things I can’t control. Like my online mom group of August – October 2006 moms, it’s great to be surrounded by like-minded people…probably more so with illness.

    Reply
    1. Susannah Fox7 months ago

      Courtney, you’ve hit the nail on the head. What we may not be willing to share in a typical social setting, we’re happy to share in a safe space, particularly one that everyone else has opted into. The research we’ve done in this area is very much inspired by people living with rare conditions. It was my fieldwork in communities like the one you describe which made me realize that people like you are “lead users” of health care, living in a possible future. What’s not clear is whether everyone will follow in your footsteps and learn from peers. Thank you!

      Reply
  5. Richard Meyer7 months ago

    I have led a lot of research over the last year on this subject and have found that there is a wide difference in the way people use social media for health which in correlated by health condition. I also learned that people use social media for health for support more than general information and that they usually do more research depending on the seriousness of their health issue. You can read some of the findings at worldofdtcmarketing.com

    Reply
  6. Patrick Venton7 months ago

    Professional`s and their institutions have elevated privacy concerns to hysterical proportions. The www has been the best way for those interested in having interactive advise and banter with their interests. Privacy concerns are being raised higher and higher by government, medical, and big business using bureaucratic containment methods to fight off the effects of the www. Thankyou Susannah Fox for such an article that interested me enough to respond.

    Reply
  7. Henry Wilder Foote IV7 months ago

    My Caregiver Experience
    For Joanna Changed My Life For The Better

    eaglesflyhigher’s Home Page

    Wilder Foote – eaglesflyhigher@gmail.com

    My wife of 51 years died quietly in my arms at 3:20am on May 24th, 2004 after I told her it was alright to let go. I had been able to keep her in our home and do all the practical nursing myself although I had the weekly supervision of a registered nurse (Hospice) during the last 4 months of her life. The experience has had a tremendous impact on me which I can only describe as completely positive in all respects.

    Joanna was a breast cancer survivor having successfully dealt with that problem about 20 years ago. She was diagnosed with Parkinson’s about 15 years ago and we dealt with the various stages of that disease over the years. Although her neurologist did not diagnose the probability of Alzheimer’s until about 4 months before she died, a look back through my memory banks would indicate that the early signs of demential could be identified about 5 years prior to her death. Since dementia is also associated with Parkinson’s, we (including the neurologist) assumed that this was a Parkinson’s rather than Alzheimer’s result until near the end of her life. Perhaps it was a combination of both. It does not really matter as the results would not have been altered.

    Things started to get significantly worse about 2 years before Joanna’s death. We went through all the stages that anyone who has dealt with this sort of thing is familiar with starting with having to eliminate driving a car from her daily routine and continuing through the other challenges including physical deterioration, mental deterioration, incontinence, hallucinations, aggressiveness, wandering, falling, feeding, bathing, etc.

    I was retired but had been working at a full time, post retirement, job for several years. It became obvious to me that I would either have to hire someone to keep an eye on things or I would have to do it myself. I was fortunate to be in a position to choose and I chose the latter. Soon I found it necessary to focus all my attention on Joanna and her needs. I had enjoyed my wine at night but soon realized that this habit was not compatible with my growing responsibility to be very alert all the time (24/7)! As the need to help her eat grew, I started eating out of the same plate. This resulted in a significant improvement in what and how much I put into my stomach. I started to lose weight which was good since I was heavier than I should have been, especially considering that I had had bypass surgery followed by a heart attack about 10 years previous to that time. My cardiologist was pleased!

    As each stage of the desease presented itself, I can remember discussing it with our children and sometimes indicating to them that I was not sure that I would be able to handle it. But I proved to be up to each challenge and both my mental and physical strength seemed to improve as we went down this difficult road together. I have always been inclined to be a loner, willing and even eager to go on a new adventure and this was certainly an adventure – although not one of my choosing! I did not seek any special outside support until I brought the hospice people into the picture through our Medicare coverage near the end. That service proved to be a very good thing to have at that point as the medical people we had been dealing with were not equipped to deal with our situation at that stage. On the few occasions that I did discuss the details of specific challenges with others, I found that my instincts were as good a guide as any that might be available from another source. I think that this is mostly a reault of what might be thought of as the uniqueness of each siuation. What works wih one person is not necessarily what will work with someone else. The road ahead is not clearly charted so the twists and turns are best dealt with as they occur. Not everyone will be equipped to deal with this sort of thing successfully by themselves. If they are not, then a skilled and willing caregiver needs to be brought into the picture or consideration given to another type of care option. The caregiver is an adventurer of sorts, willing and able to deal with the unexpected to the best of their ability.

    When Joanna died, after being in a comatose state for about 5 days, I did not cry although there were emotions present along with the sense that a great weight had been lifted off my shoulders. The 24/7 caregiver experience had gradually prepared me for the inevitable end so grief was not an issue and relief for Joanna and me was the final result. My biggest concern at the end was that I might be out walking the dog instead of by her side when she died. I was lucky, her labored breathing woke me up (I slept on the sofa beside her hospital bed that was in our living room) and was able to hold her and tell her I loved her one more time. She went peacefully. I called our children to tell them that what we all knew was about to happen had occurred. I took care of the necessary details of the moment and proceeded to start to think about things. I immediately realized that although Joanna had died, she was still very much with me. Call it what you will; I think it has to do with my feeling that she and I had somehow grown together over the years and become two within one so to speak. In any case, there was no loneliness and this condition continues unabated to this day so I am confident it will continue through the rest of my life. I feel very lucky!

    Things started to work out perfectly as if she was sitting on my shoulder with her hand still on the tiller of our lives together. I sold our home the first day it went on the market when no other homes were selling at the time. I bought and moved into a small travel trailer with our little silky terrier (Charlie) to begin the lifestyle of what is known as a Full Timer and adopted the signature of “The Traveling Man”. The State of California offered me an opportunity to be a volunteer at Donner Memorial State Park in Truckee just north of Lake Tahoe. My physical and mental condition continues to improve as I have chosen to continue with the much healthier habits that I acquired during my caregiver days. Charlie and I have proven ourselves capable of taking on a 5 mile hike in the mountains at over 7,000′. Two years before Joanna died I got angina when I walked 100 yards! Now, I usually walk at least 2 miles a day and often more. Stress has gone out of my life. Negative thoughts seem to be a thing of the past. There is a calmness that seems to surround me in a protective sort of way. There is a corner reserved for Joanna’s picture, a pair of carved swans symbolizing our relationship, and a carved road runner symbolizing all of our travels together. I can look at it easily. I talk to my lady a lot. Her memory remains as strong as ever. I have about 9,000 pictures of our life experiences stored in my laptop and they appear on a random basis when in screen saver mode which is most of the time each day that I am not traveling somewhere. I can see the laptop screen from anywhere within the trailer.

    The life of a Full Timer suits me very well. It is a series of never ending smal adventures which seem to keep one very interested in life and the world we live in. I had thought I would not last long after Joanna died but that was before I realized that she is is still with me. There is plenty of time to “smell the flowers” and enjoy a “peace of mind” that I have never known before.

    Reply
    1. Susannah Fox7 months ago

      Thank you for sharing this beautiful story. “The road ahead is not clearly charted so the twists and turns are best dealt with as they occur” is a line that will stay with me.

      Reply
    2. e-Patient Dave7 months ago

      My GOSH, Henry Wilder Foote IV … that’s an extraordinary bit of writing. How great of you to share it with us. Thank you.

      Reply
  8. CarlyRM7 months ago

    I think the ability to share health information (knowledge, experiences, oddities, setbacks, triumphs) is possibly the best thing about social media. I’m a pretty tough cookie – laughing in the ER with a pain level of 9/10, but when my iPhone was breaking and my mom suggested I wait to replace it for completely valid financial reasons, I actually broke down and cried. I didn’t realize just how much “the friends that live in my phone” meant to me, until I faced the thought of being without easy access to social media. It’s not cheap, but applications such as Twitter and Facebook have kept me calm when in anxiety-triggering situations, entertained when home bound, and connected to many communities where I feel accepted and valued so many times that it’s the become one of the cheapest and most effective forms of “medical treatment” I have. In the majority of cases, it is the friend that I’ve never met who will reach out to offer support and empathy where the friends I’ve known for 10 years or more will misunderstand, or totally ignore discussions on the subject of physical or mental health.

    Reply
    1. Susannah Fox7 months ago

      Yes! The “friends that live in my phone” — a phenomenon not limited to any age or other demographic group. Thanks, Carly.

      Reply
  9. MeredithGould (@MeredithGould)8 months ago

    Yes, let’s please “set the taste debate aside,” acknowledge the many wonderful posts/articles that address this and focus on bigger and deeper issues. What you address here about how people go online to search for and share health/healthcare information and status is great. Of course.

    Another and perhaps more qualitative issue to explore at this point in time is how social media has near-completely transformed cultural and social norms relative to privacy and disclosure (self and otherwise). Also, how social media has near-completely transformed our notions of what constitutes “good” or “bad” timing.

    I’ve been collecting (and now have a huge virtual file) of all commentaries that I plan to sift through before writing about this in more. I just wish I had the time and resources to more rigorously review the commentary by age, gender, health status, length of time with health status, presence and participation on social media, as well as presence and participation by different forms of social media.

    Reply
  10. sher8 months ago

    when you have a condition that most doctors don’t know about, these sorts of places and conversations are sometimes lifesaving. those of us who have these sorts of conditions bravely out ourselves, as it is sometimes the only way to show others that we are serious. while no one is ever happy to know that anyone else has their potentially-deadly condition, when you do meet others who share your struggle, it is so very, very powerful. hence, i have blogged about my condition, and i am doing everything i can to raise awareness, one person at a time.

    Reply
  11. e-Patient Dave8 months ago

    Susannah, once again your focus on facts brings clarity to one dimension of this complex, sorry mess of a story. To me it’s sad and strange that two career journalists behaved this strangely, not checking their own facts on this one patient. But even if they had, they also needed to understand the actual behavior of people online, to put Lisa’s one case in context.

    In my own work with over 200 events and policy meetings in the past 3 years I’ve repeatedly seen a shift in attitudes (and sometimes policy) when I cite Pew data on these matters. I’d say that right before my eyes, this careful, non-opinionated information gathering is enabling better policies and better preferences among people plotting out our future. And SO many families’ lives are affected.

    Reply
    1. Susannah Fox8 months ago

      The Pew Research Center does try to use data as a mirror and a window. We hold up a mirror to society so people can see themselves more clearly and use the data to make reality-based decisions. And we offer a window into other people’s lives and opinions, who may be very different from you. In this case, our data is a mirror for all those people who are already connecting online to gather and share health information. And it’s a window for those who have not had the need or the opportunity to do so.

      Reply
  12. Mark Laichena8 months ago

    Interesting result that chronic conditions don’t result in greater online research/engagement!
    Did you adjust for age here, or is this likely reflecting age-related internet usage patterns?

    Reply
    1. Susannah Fox8 months ago

      Thanks, Mark, great question.

      We did the statistical analysis to isolate disease status as a variable and identified what we called “the diagnosis difference.” It cuts two ways:

      Holding other variables constant (including age, income, education, ethnicity, and overall health status), the fact that someone has a chronic condition is independently associated with being offline.

      Holding other variables constant, living with a chronic condition increases the likelihood that someone will seek advice, information, or support from clinicians, family members, and peer patients. The effect is also seen in what we call the “social life of health information” activities. Internet users living with one or more conditions are more likely than other online adults to:

      - Gather information online about medical problems, treatments, and drugs.
      - Consult online reviews about drugs and other treatments.
      - Read or watch something online about someone else’s personal health experience.

      You can read more here:

      pewinternet.org/Reports/2013/The…

      Reply
  13. Brian Ahier8 months ago

    Another outstanding piece from Susannah! Nicely done…

    Reply
  14. Sally Okun8 months ago

    Thank you Susannah – as usual you have created a meaningful conversation by framing the discussion about what most of us would agree is a basic human need that goes way beyond what health care can offer – connectedness.

    My practice in community-based palliative care offered me access to the most incredible teachers about life and living – lessons I use every day in both personal and professional relationships.

    Today I continue to learn from amazing people – the 1/4 million members of PatientsLikeMe who bravely and openly share their health and life experiences for all sorts of reasons and in so doing “softly bind” the wounds of others both near and far.

    Sally Okun
    VP Advocacy, Policy and Patient Safety
    PatientsLikeMe

    Reply
    1. Susannah Fox8 months ago

      Thank you, Sally!

      As you probably have seen in the coverage of this episode, palliative care was unfortunately mischaracterized as essentially deathbed care. Fortunately for Lisa Adams, the Kellers’ implication that she is tweeting from her deathbed is not true. Unless you count the fact that we are all dying. But let’s not dwell on that today.

      Our research shows that many people are not waiting for a clinical trial or academic study to prove the benefits of connectedness. One thing I appreciate about PatientsLikeMe is that you are endeavoring to complete those trials and studies, gaining attention at the highest levels of science for the work that so many “laymen” are engaging in online.

      Reply
      1. Regina Holliday7 months ago

        Thank you Susannah for a great post with a concise explanation of the situation. I wish more people would use research as you do. This entire episode was very sad. It is important to be able to speak with others who are going through what you are going through as a patient or a caregiver. I was frustrated to see palliative care associated exclusively with death bed care. I was saddened to see a journalist encourage a major voice within patient rights to go quietly into that dark night. Some of us talk with our friends until the very end. Perhaps that is the greatest misunderstanding here. We are not talking about the communication style of reporter versus audience. Social media is about friends talking with friends.

        Reply