“Parkinson’s Disease In America 2018,” an annual survey conducted by Health Union, recently revealed the experiences and perspectives of more than 1,600 patients and care partners who are impacted by PD. The survey shows patients turned to PD-specific websites nearly as much as their doctor to learn about or manage their condition.
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IBS can cause gastrointestinal symptoms that have a substantial negative impact on one’s life, which is often amplified by the condition’s impact on a patient’s emotional well-being. The “IBS In America 2018” survey conducted by Health Union gathered insights from over 1,500 people currently suffering from IBS to better understand the condition’s impact on their lives. The survey found that 45% of people with IBS are apt to experience anxiety or panic disorders, with stress also being a trigger for many patients.
On March 26, 2018 Health Union opened the doors of its new event center in Philadelphia for the second annual HU Connexion, a conference for patient advocacy, to gather and thank the extraordinary network of patient advocates who share their experiences and journeys with thousands of people every day as moderators and contributors for its online communities.
Online communities fill a void for people with chronic health conditions, offering information, emotional support and connection to others with common experiences. By fostering relationships with members of these online health communities – through relevant content and engaging social conversations that touch on and validate the personal experiences of living with certain chronic conditions – Health Union has the rare opportunity to more accurately understand the concerns of people with these conditions.
Last month, headline writers had a field day dreaming up puns for coverage about several pharmaceutical companies’ decision not to run ads for erectile dysfunction drugs during this season’s NFL broadcasts. And, while a connection to the recent sale of WebMD might not be immediately obvious, upon closer examination, these stories share a common theme. Both reflect the shifting sands beneath the pharmaceutical industry and how, in reacting to them, its marketers are being challenged to do more with less.
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.
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.
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.