“Seeking Social Solace”: why aren’t heart patients online?

15 Dec

by Carolyn Thomas  @HeartSisters

See that microscopically tiny little purple sliver near the top of the pie chart? That’s heart disease – and the sliver represents how many heart patients are going online to engage with others about our shared diagnosis. As you can see, we make up barely 2% of all diagnoses discussed by patients on social media, the second smallest slice of this very big tasty pie.  You might wonder why that is given that, compared to every other disease included in this study’s findings, heart disease is our biggest killer.

The pie chart is based on research from the Minneapolis-based marketing firm Russell Herder. Their study called Seeking Social Solace identified certain trends in how patients with serious medical conditions are using social media platforms. By analyzing phrases such as “I’ve been diagnosed with . . .” or “The doctor said I’ve got . . .”, Russell Herder researchers tracked patients’ self-disclosures based upon:

  • day of the week
  • the online platform most frequently used
  • the type of disease most likely to be announced and discussed online

Few events are as life changing and overwhelming as the moment someone learns he or she has been diagnosed with a serious illness, wrote the Russell Herder researchers. According to their report, the Internet has not only transformed how consumers gain access to health information, but “social media is radically changing how they seek comfort during the most difficult of life’s circumstances”.

As Stewart Brand, founder of the iconic Whole Earth Catalogue, once wrote:

“The Internet already is made of one quintillion transistors, a trillion links, a million emails per second, 20 exabytes of memory. It is approaching the level of the human brain, and is doubling every year, while the brain is not.  It is all becoming effectively one machine.

“And we are the machine.”

The Russell Herder research found that the most popular social media platforms to self-disclose serious diagnoses were:

  • blogs (with 51% of patients either visiting blogs like Heart Sisters, or launching their own blogs to share their stories)
  • online patient message boards, like Inspire’s WomenHeart community (30%)
  • Facebook and Twitter (7% each)

Patients disclosed their conditions 23% more often on weekdays compared to weekends. (This finding certainly rings true for me here at Heart Sisters – my stats pages show small but predictable drops in visitors every Saturday, for example).  The researchers ask:

“As diagnoses may often occur at doctors’ offices and clinics during normal business hours, could this distribution suggest that patients are more likely to share related news online immediately or shortly after learning of their condition rather than waiting for days before doing so?”

Russell Herder researchers surmise that blogs are used mostly by patients who want direct communications with family and friends, versus people using online patient forums who might also be offering support of others in similar situations.

And speaking of supporting others on these online patient forums, Susannah Fox of Pew Research offers a simple definition of what she calls this type of peer-to-peer health care:

“Patients and caregivers know things — 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.

“One in four internet users living with some chronic ailment (23%) say they have gone online to find others with similar health concerns.”

Dr. Nicholas Christakis is co-author of the book Connected: The Surprising Power of Our Social Networks and How They Shape Our Lives — How Your Friends’ Friends’ Friends Affect Everything You Feel, Think, and Do. His book claims, for example, that we don’t live in groups – we live in networks. And social media networks can magnify whatever they are seeded with, for good or for ill.

That, he explains, is why the phenomenon of altruism spreads in such online patient forum networks. (I’ve written about his former interesting research with his colleague Dr. James Fowler on connections before here – see also: “Women and Heart Disease: Is Obesity Contagious”?)

Susannah Fox adds:

“Studies have confirmed what we have all seen in our daily lives: the more help you get, the more likely you will be to help someone else. If you have benefited from peer coaching, you are more likely to become a coach to others. And coaches then stick around the network to help other people.

She cites the example of a woman named Jeri, an online support community member who says she keeps an eye out for new site users and “tries to help two people each day”. If someone hasn’t received any responses to a question or comment, she will respond and, even more powerfully, she will follow up the next day.

The pie chart above suggests that about 40% of the medical conditions disclosed by patients online last year were cancer-related, with breast cancer patients much more likely to share information about their diagnoses than those afflicted with other forms of the disease – even though four times more people are diagnosed with cancers other than breast cancer each year.

The demographics of breast cancer may, in fact, offer a partial clue as to that ‘why?’ question. Female patients, particularly younger women, are heavier users of social media than male patients are, and there are more online sites for breast cancer than for other forms of cancer.  In fact, as John Novack, Communications Director at the online patient support community Inspire.com, told me recently:

“Women make up the majority of our communities on Inspire. Even our prostate cancer support group has a significant percentage of women members. They are the spouses or daughters of the prostate cancer patients.”

We know that eight out of 10 internet users have looked online for health information (and this includes physicians, by the way).  Many so-called e-patients claim that the Internet has had a significant impact on the way they care for themselves or for others, according to Pew Research.

When I browsed all the other serious diseases represented here, I couldn’t help but ponder what’s going on in heart disease? As the Herder report observes:

“Few events are as life changing and overwhelming as the moment someone learns he or she has been diagnosed with a serious illness.”

So why are cancer patients 20 times more likely to turn to social media than we heart patients are to share diagnoses and experiences?

Could it be due to the same reason that makes barely 40% of us show up for cardiac rehabilitation programs, despite convincing evidence that completing such rehab will improve overall outcomes for all heart patients?

Could it be due to the same reason that barely half of patients with high blood pressure – strongly linked with heart attack risk – actually take their prescribed doses of anti-hypertension meds?

Could it be due to the sheer volume of online information “out there” that makes it too overwhelming for heart patients to take in? A survey of 17,000 patients that was released in November from the Center for Studying Health System Change reported:

“So much information is available – and so much of it conflicting – that some overwhelmed patients may be opting out altogether from researching their health.”

Could it be due to the same reason that an articulate, elegant-looking woman in one of my recent heart health audiences put her hand up at the end and asked me:

“My doctor says I have a ‘heart rhythm problem’ – what does that mean?”

An online observer on one patient support forum I found made sense to me when posting  this comment:

“I think this pie chart shows the power of traditional media to make certain diseases acceptable and easy to talk about. Cancer organizations have done a great job raising awareness, removing  stigma of the disease, and making patients feel empowered.

“It’s not enough to provide places for patients to talk. You have to bring greater social acceptance to the disease.”

We know that over 42 million women in North America are living with heart disease. Yet the largest women’s heart health support community, WomenHeart, has only 13,000 online members.

Cancer, and more specifically breast cancer, has arguably attained that social acceptance thanks to the power of Pinktober and beyond, when an avalanche of pink consumer products bombard us to help promote breast cancer awareness.

Brian Herder, Executive Creative Director at the Russell Herder agency, believes that his company’s new research findings have implications for a wide range of health care organizations and those whom they serve:

“Social media platforms have created a wealth of opportunity for health care consumers. We hope this study helps health care professionals imagine new, innovative ways to serve the emotional needs of patients who receive troubling news about their health.”

See also:

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17 Responses to ““Seeking Social Solace”: why aren’t heart patients online?”

  1. creativitytothemax December 20, 2011 at 6:30 am #

    Carolyn,
    It’s my belief that heart patients aren’t on-line mostly because of publicity, or the lack thereof.

    I have a heart condition and fibromyalgia. Now that the drug companies have made fibro legit and inundating the airwaves, the blogs etc are starting to light up with fibro patients.

    Heart issues have never become the Malady du Jour. Celebrities (and certainly not FEMALE celebrities) don’t admit to having them, and Dick Cheney isn’t exactly the right poster child.

    Like

    • Carolyn Thomas December 21, 2011 at 6:30 pm #

      You know, Judith, this whole thing is a mystery to me! I guess because I had so many questions and problems immediately following my own heart attack, and couldn’t wait to start Googling to find out more about what the heck had just happened to me, I find it puzzling that more of us are not going online for information and support. (And don’t even get me started on Dick Cheney . . . !)

      Like

  2. Dr. Anne Stohrer December 16, 2011 at 2:49 pm #

    “You look great.”
    “I can’t believe you had heart surgery.”
    Denial? Fear? Suppression?

    As I search for online and realtime support, I am so aware of the lack of resources and information overall. For example, the only support group in my area meets once a month in the evenings, and the maintenance cardiac rehab group only has 5 members, and no women (it meets Tuesdays and Thursdays at noon, therefore no one working can attend).

    The energy necessary for basic activities of daily living may be all that recent heart event women have. I believe that there are many barriers to care and participation and you have just touched the tip of the iceberg.

    Like

    • Carolyn Thomas December 16, 2011 at 6:43 pm #

      I agree, Anne. Timing of any in-person support group is problematic for those diagnosed with a progressive and chronic disease like ours: if it’s an evening meeting, we may be too pooped to leave the house after dinner, and if it’s a daytime meeting, those who are at work cannot attend. All the more reason you’d THINK that more of us heart patients would go online in droves to find information and support!
      cheers,
      C.

      Like

  3. Laura December 16, 2011 at 1:47 pm #

    Very interesting, Carolyn! I learn something new every time I read your blog.

    I agree that there’s a stigma attached to heart disease; I think it’s one reason we in my local area (not just me, but my other WomenHeart Champions friends in the same geographical area) are having trouble getting our support groups off the ground — women here in central North Carolina definitely do have heart disease, but instead of reaching out for support, no one seems to want to talk about it.

    For me, that lack of local, in-person support makes the connecting that I do online so special.

    Like

    • Carolyn Thomas December 21, 2011 at 6:37 pm #

      Thanks for your unique perspective, Laura. We can go online at 5 a.m. in our jammies instead of having to go out in the dark and bad weather to an in-person support group (as Anne wisely pointed out in her Dec 16th comment here). And it must be very frustrating for group organizers, too! But if we’re not going to support groups, and not going online either, where do you think heart patients are getting the most useful information?
      Cheers,
      C.

      Like

  4. Dr. Angelo A Alonzo, Director, Yale Heart Study December 15, 2011 at 1:32 pm #

    Very nicely expressed in terms of why heart patients might not share information. I strongly subscribe to the “raising awareness, removing stigma of the disease, and making patients feel empowered” perspective.

    Hearts are so central to our beings that problems with them raise serious questions about social and physical capacity, and ultimately mortality. Not addressing these aspects of who we are is very easy and self protective for the heart patient. So, next February should be “Reduary” for heart month to raise awareness, eliminate stigma and empower patients.

    Like

    • Carolyn Thomas December 16, 2011 at 12:28 pm #

      Hi Dr. Alonzo – love the “Reduary” concept. I’d like to also remind all readers who are heart attack survivors to visit your Yale Heart Study site to participate in your research on treatment-seeking delay behaviour during a cardiac event.

      Keep up the good work!
      cheers,
      C.

      Like

  5. Carina Alm December 15, 2011 at 1:28 pm #

    Nice blog and nice to get confirmation that heart patients are not online. Fit to my suspicions. Best regards, Carina Alm

    Like

  6. Vetia December 15, 2011 at 7:02 am #

    Hi Carolyn,

    There is a stigma attached to heart disease and it is worse than people think. First, heart patients for the most part don’t look sick. This is the thing that others don’t understand, not even family. When you talk to most you find that their group of friends have changed.

    I wouldn’t have thought that having a heart attack would have changed me so much.

    It has given me limitations I never had before, I worked all day, go home, cook dinner for my husband, mother and whoever was at the house that evening, and have a good time. Get a call around 10 or 11pm, that some of the ladies are going to hang out for the night and did I feel up to it, we would stay out until 2 or 3 in the morning. We did this two or three nights a week. Most of those friends feel it’s been a year and you should have healed by that time and able to pick up where you left off.

    They don’t understand that even though you look fine, your body can never again do the things you used too. You can’t walk around the malls all day and hang out at night. That if you work from 8-5 that when you get home the dinner is what ever you can warm up or pick up quickly on the way home. They don’t understand that if you pick up you can eat right away, but if you have to warm up you need an hour or two to collect yourself.

    It is that lack of understanding from the public at large that stops heart patients from the social networks. They post in the mornings after family has gone off to work or school because they don’t understand,or it may be around the lunch hours, or before husband comes home from work, or after everyone is in bed for the night. Weekends are out because family is around and they don’t know why you need to talk to people on line.

    A heart patient’s world does a 360 turn and it knocks them off their feet and the thing they truly don’t get is why NO one understands. You are never told that there are online sites that can help you understand what you are going through and that there are friendships you can form and there is medical information.

    The stigma is that people really feel that in time the heart problem will go away because it isn’t something you were born with, you only feel bad because you keep talking about it. “You look fine”, this statement is our number ONE problem, and people are afraid to talk about it for fear of being called weak.

    Funny but true,
    Robin

    Like

    • Carolyn Thomas December 16, 2011 at 12:32 pm #

      Hi Vetia – glad you have now discovered some online sites that can help your adjustment to the “new normal”, and that you can now pass the info on to others in the same boat.
      cheers,
      C.

      Like

      • Vetia December 16, 2011 at 2:23 pm #

        I have to deal with it but I will never accept it. I told my cardiologist office to never call it normal if they do I stop taking the medications. I hate the word normal.

        Robin

        Like

        • MIsurvivorX6 December 18, 2011 at 7:11 pm #

          I’ve had six heart attacks, and I just cringe and bite my tongue every time a well-meaning nurse or friend says you now have a new normal. BTDTx6! And just recently being diagnosed with breast cancer got me a bunch more of “new normal” comments . .

          Anyway, Carolyn, this is so interesting you blogged on this topic this week. I am a WomenHeart Champion and have been an active member of WomenHeart Inspire communityfor five years. It’s been a Godsend.

          In my city, we had a WH support group that no longer meets. I had continued to do booths at health fairs and one of the things I changed on my tri-fold was to post in large print the WH online support community URL address. It has been my lifeline and it has been for many other women heart patients, but it wasn’t until the last few weeks that I myself wondered about the difference in traffic in the WomenHeart discussion board and the Breastcancer.org discussion board.

          In June, I crossed over to the “pink side” against my own free will. It took me 3 months after BC Dx before I could bring myself to search for a BC board (all the while still frequenting my beloved WH board). Breastcancer.org’s an impressive board, but so huge I’m still getting used to navigating it. I’d say the purple sliver is spot on. Here are BC board stats posted as of today:

          “There are currently 105,576 members in 67 forums discussing 82,650 topics.”

          So it took me a while to find forum discussing tamoxifen and cardiotoxicity. I found a woman this week who got diagnosed with BC, and during treatments suffered a heart attack (fortunately she “just knew it was” and called 911 herself.) So I couldn’t help but recruit her to the WomenHeart discussion board. Don’t know if she made it there yet, but here’s part of her long response to my PM I sent her.

          “Dear ___, You are a true gift to my soul right now … and to hear there is indeed a discussion board for women and heart … I have been searching off and on since March … thank you for the early Christmas present.”

          So I will continue to recruit heart sisters every chance I get. :)

          Thanks for your women and heart disease blog. I follow your blog as one favorite for heart, and I have one favorite for BC. I would love to see and help with a campaign to promote the WomenHeart discussion board.

          One last thought . . . IMO based on the tiny amount of time spent on BC board, we are much more “tame” in threads on WH board, seem to have more misdiagnosis, and thus more doctor changing/firing. :)

          Like

          • Carolyn Thomas December 21, 2011 at 6:22 pm #

            That’s okay – I’m used to it! Happy Holidays to you, too!

            Your own health issues sound overwhelming – you certainly have more than your fair share, don’t you? Enough, already! I like your idea about adding the WomenHeart Inspire.com community link to your handouts – I do the same, and also have a link to their online community site from mine (on the bottom of every page here) and throughout my site. This online community was a lifesaver for me, particularly in the early weeks and months post-MI.

            I recommend that EVERY WOMAN who has been diagnosed with heart disease of any kind visit the WomenHeart site and log on (it’s free!)

            Like

          • MIsurvivorX6 December 21, 2011 at 7:23 pm #

            Carolyn,
            Do you happen to know what the current stats are for the WomenHeart Inspire online community? Just curious.
            Off to google some med info before my next appointment . . . :)

            Like

            • Carolyn Thomas December 22, 2011 at 5:19 am #

              I asked John Novack this question (he’s the Communications Director at Inspire.com) and his answer: 6,140 registered members in the WomenHeart online community. That’s a very far cry from the 105,000+ members on the breast cancer site!!
              Cheers,
              C.i

              Like

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