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 presentation audiences put her hand up at the end of my talk 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.”
- Discover. Join. Leave. The Life Cycle of Online Patient Groups
- Online Patient Groups: Why So Under-Used?
- What Really Goes On in Your Friendly Online Patient Group?
- What Doctors Really Think of Women Who Are Medical Googlers
- Health Information Online: How to Tell the Trash from the Truth
- Why We Keep Telling – And Re-telling – Our Heart Attack Stories
- Why You’ll Listen to Me – But Not to Your Doctor
- How a Heart Attack Turned Me into an “Information Flâneuse”