IN THE NEWS
Asthma patients suffer from a large number of symptoms that impact many aspects of their quality of life, according to Asthma In America 2017, a newly released national survey of more than 1,000 individuals diagnosed with the condition. The survey finds patients deal with a chaotic array of triggers that often make the disease extremely difficult to manage and control.
New survey finds IBD patients often suffer from misdiagnosis and pain: IBD In America 2017, a national survey by Health Union of more than 4,000 individuals diagnosed with Crohn’s disease or ulcerative colitis (UC), reveals many people with these conditions struggle with fatigue, pain, and other often invisible symptoms that affect many aspects of daily life. The survey, released through Health Union’s online community, CrohnsDisease.com, also finds that patients are often initially misdiagnosed. Many report struggling to find an effective treatment, but are hopeful for future treatment options.
MS in America 2017, a national survey of more than 5,300 individuals diagnosed with multiple sclerosis (MS), reveals many people initially received an improper diagnosis and have trouble finding an effective treatment. The survey, conducted between January 25 and March 1, 2017, also finds patients struggle with pain and symptoms that impact many aspects of daily life. MS in America 2017 is the fifth annual Health Union survey about the condition.
IBS In America 2017, a national survey by Health Union of more than 1,300 individuals who have experienced Irritable Bowel Syndrome (IBS) symptoms, reveals many people initially chose to do nothing about symptoms and often received an improper diagnosis. The survey, released through Health Union’s online community, IrritableBowelSyndrome.net, also finds patients are unsatisfied with their health care professionals (HCPs), struggle with negative feelings, and a majority are also diagnosed with other health conditions.
Lung Cancer In America 2017, a newly released national survey by Health Union conducted with more than 800 individuals diagnosed with lung cancer, reveals high levels of stress and anxiety, even among those declared as having no evidence of disease (NED). The survey finds patients are satisfied with their health care professionals (HCPs), and see them as thorough and understanding.
Taking on the newly created role of Senior Vice President, Insights, Anna McClafferty has joined Health Union’s leadership team, where she will be responsible for driving the growth of the company’s Insights business.
Rheumatoid Arthritis In America 2016, a national survey by Health Union of more than 3,100 individuals who identified as having rheumatoid arthritis (RA), reveals that initial symptoms are often invisible to others, with respondents experiencing more than six on average. A summary infographic is also available. Among people with RA who took the survey, receiving a diagnosis often proved difficult with the average time between initial symptoms and diagnosis spanning four years.
T2D Lifestyle, a national survey by Health Union of more than 400 individuals living with type 2 diabetes (T2D), reveals that patients not only struggle with commonly understood complications, but also numerous lesser known ones that people do not associate with diabetes. Managing diabetes on a daily basis can also result in emotional stress.
Psoriatic Arthritis In America 2016, is a new national survey by Health Union of over 500 individuals suffering from psoriatic arthritis (PsA). The results reveal that the diagnosis process is often frustrating and lengthy, and that most patients experience multiple symptoms before leading to a diagnosis. In addition, respondents reported difficulty explaining often invisible symptoms that progress and become more debilitating over time.
Last Thursday, Medical Marketing & Media (MM&M) celebrated its annual Awards Gala, which recognizes and champions both creativity and effectiveness in healthcare marketing and communications. Health Union was awarded Silver in Best Healthcare Consumer Media Brand for its patient-centric platform, MultipleSclerosis.net. Judges were impressed by new features, such as customized content based on patient personas, which helped drive huge increases in monthly site visits, registered members, and media revenues, as well as monthly Facebook reach (1.2 million) and engagement.
As we transcend into the Health 2.0 ecosystem, where the notion of patients using technologies to take control of their personal wellbeing has become more commonplace, our entire global healthcare system has begun to shift.
Migraine in America 2016, a national survey by Health Union of more than 3,900 individuals experiencing migraines, reveals that patients have numerous treatment options, but are often dissatisfied with results. A summary infographic is also available. Many reported difficulty receiving a diagnosis, particularly when young. In addition, respondents noted feeling isolated and stigmatized due to the condition.
Psoriasis in America 2016, a new national survey by Health Union of nearly 600 individuals with psoriasis, reveals that although patients have numerous treatment options, they have difficulty finding treatment plans that work. In addition, respondents reported a heavy emotional toll, with many feeling isolated and stigmatized due to the condition.
At Health Union, our online health communities: Migraine.com,MultipleSclerosis.net, RheumatoidArthitis.net, Type2Diabetes.com,HepatitisC.net, COPD.net, CrohnsDisease.com, Asthma.net, andIrritableBowelSyndrome.net, have experienced mobile traffic more than close to double that of desktops and laptops. While a lot of reasons could play into this, such as the demographics of our communities or the role of promotions of our content, recent trends regarding mobile and PC devices show we’re not the only ones to experience such an increase in mobile usage. Recent research has shown an explosion of mobile use.
Last week, Health Union CEO and Co-Founder, Olivier Chateau opened up to PharmaExec.com – a leading source for industry news and insights – about how our company is combining digital technologies and high-quality content to build real, trusted relationships with patients. Read an excerpt below or access the full article here.
Today, MM&M announced finalists for its annual awards, which recognize and champion both creativity and effectiveness in healthcare marketing and communications. Health Union is proud to be among the finalists for Best Healthcare Consumer Media Brand for its patient-centric platform, MultipleSclerosis.net. Read more about MM&M Awards 2016 and see other finalists here.
A new national survey by Health Union of more than 1,000 individuals with Irritable Bowel Syndrome (IBS) reveals that the condition is difficult to diagnose and often even more difficult to treat. Respondents often found healthcare providers and the public in general lacking in empathy and understanding of the full impact of the disease. Self-treatment often becomes the norm and controlling symptoms difficult.
A new survey from Health Union of more than 2,200 people with chronic health conditions and their caregivers illustrates how patients use online health information to better understand their health condition, learn about symptoms and treatment, and share experiences with other patients living with the same health condition. The findings are summarized in a recently published white paper, entitled “Social Media for Health: What Patients Really Want.”
In a new national survey of asthma patients, Health Union, and its new online community Asthma.net, reveals that most were satisfied with the care they received; however, the most frequently used form of treatment, at 89%, is the rescue inhaler. The results also show the difficult path many people have prior to being correctly diagnosed with asthma.
We, as humans, are natural story tellers. Even our most basic communications are often expressed in the form of a narrative. “A narrative account involves a sequence of two or more bits of information which are presented in such a way that if the order of the sequence were changed, the meaning of the account would alter”. We apply this, and multiple other indicators, all the time. Temporal changes, tense variation, climaxing topics, learned morals — we incorporate these elements into much of our daily conversation without even realizing it. And we come to digest and remember our experiences based on repeated narration.
In a new national survey of Crohn’s disease patients, Health Union reveals that it was not uncommon for patients to see multiple healthcare professionals (HCPs), have numerous office visits, and endure multiple diagnostic tests before receiving a diagnosis. Results demonstrate an impact on such things as the ability to work or exercise, but also on overall quality of life and social activities. Respondents wished more people understood the disease and its impact.
Anyone who manages a community — online or offline — will identify sensitivities within that community. This includes topics that either generate strong feelings of consensus or prompt division within members. The role of the community manager is to identify these sensitivities, and then manage them in a way that generates positive, productive discussions.
As busy community managers, it can be easy to get caught up in the daily work of assessments, moderating, and even theories behind community work — and get distracted from the original vision for one’s company. So it’s important to revisit how one is going about reaching those goals. At Health Union, we find that revisiting “the basics” can be a critical exercise in constantly reexamining our approach to community management. In a recent team brainstorming session, our VP of Community Development, Amrita Bhowmick, created an exercise that allowed our group to easily share our ideas about what “community” means to us, and what qualities can make or break a community.
Over the past several years, there has been a significant growth in the popularity of online communities, and as one may expect, there are a multitude of challenges associated with developing these seemingly robust communities into self-sustaining businesses. In 2013, the CEO of Reddit, for instance, reported that despite having 70 million monthly readers, his company wasn’t making money. More recently, Jack Dorsey, the CEO of Twitter, announced (via a tweet), that there would be company layoffs to “move with greater focus and reinvest in our growth.” A viable business model is absolutely critical to maintain thriving and sustainable communities.
As we know, the holidays can be a wonderful time to celebrate, spend time with friends and family, and hopefully enjoy some downtime. In fact, almost everyone who participated in our survey said they plan to make the time they spend with friends and family extra special during the holiday season! Unfortunately, the season can also be stressful, particularly for individuals living with a chronic condition.
“Why do lurkers lurk and what do they do?” The 90–9–1 rule of thumb has been applied to many digital and online communities. 90% tend to be less vocal but still engaged, 9% tend to be more vocal by commenting and/or sharing, and the remaining 1% tend to be the most vocal by creating new content. The lurkers are the 90%. While the exact ratio is highly debated and perhaps outdated, the idea that lurkers or what we refer to as the “silent majority” make up a large portion of online communities still holds true.
It’s no secret that health-related topics are becoming a predominant theme in online social media. We’ve all woken up with some sort of symptom that we just had to Google. Even I, just the other day, woke up with an unbearable pain in my head. So I did some Googling and was convinced I had a meningioma. Convinced! Turns out I had what the kids call a “hangover” from one too many glasses of wine the night before. So I canceled my brain surgery, and popped an Advil.
Community, Social Community, Social Network, Community of Interest, Community of Practice, Virtual Community, etc. The list seems infinite. These terms are used almost interchangeably, but actually hold distinct meanings that can affect the way we as community managers approach each community type.
Recently I read a question posted among a group of community managers, asking if people believed that it was possible to manage a community that you are not actually a part of. Not surprisingly, many people were doubtful. It’s only natural to assume that being a member of a community that you are managing would be an important component to successful growth of that community, but you might be surprised to learn that this may not always be the case!
Health Union recently had the unique opportunity to collaborate with Amy Wachholtz, PhD and Christopher Malone, from the University of Massachusetts Medical School, to publish findings from the 2012 Migraine In America study. Their interest in understanding the psychological and social impact of migraine was particularly exciting to me, as we at Health Union know first-hand how severely migraine can affect the lives of our community members. Increasing overall awareness regarding this impact is critical for ensuring that individuals with migraine receive the best possible care.