Can engagement in online health communities (OHC) improve the quality of life for members while simultaneously having a positive impact on quality of healthcare as a whole? We think so.
When it comes to living with a chronic health condition, the challenges can be numerous and disrupt life in many ways. From physical challenges to emotional impact, learning how to cope and seeking help are important steps in addressing and dealing with those challenges.1
Within healthcare, OHCs have emerged as a valuable and accessible way to help people living with chronic conditions to learn and cope. The growing popularity of OHCs has the ability also to create confusion in discerning which of these communities are most valuable. The truth is, it really depends on what you’re looking for (or what an individual is looking for).
Meet People Where They Are
At Health Union, our model and approach focuses on “meeting people where they are," a key principle that we apply, which comes from the concept of communities of practice (CoP).2 Ever since people have been learning and sharing experiences through storytelling, CoPs have existed as a way for people to share concerns, problems or passion about a specific topic. While the concept of CoP happens organically, over time they have become much more defined and deliberately implemented and studied.
People who take part in a CoP can improve their knowledge about a shared topic area of interest through both formal and informal interactions.3 Health Union believes that this is particularly important within healthcare.
Health Union’s open access, online health communities are designed to allow people the flexibility to engage based on their own personal situation and desires. In this environment, we welcome those who only want to lurk or engage in more informal interactions with other members, as well as those who want to engage more substantially. “Lurkers" have the ability to share ideas with fellow members more passively (e.g. reacting to or sharing what someone else posted or said) while simultaneously learning from each other through responses to polls and other tools.
Larger scale initiatives, such as surveys that can be anonymously taken by any member, provide quantitative evidence to identify the full range of condition experiences. These quantitative, first party data allow us to continue to “meet people where they are" with the information, connection and validation they want. This model provides highly effective means for support because we constantly listen, learn and adapt based on what we see and hear happening in our communities, taking into account all levels of engagements. In doing so, we can understand, reach and engage people in a way that few others can.
All of this is possible because of the relationships we have with our advocates, including patients, caregivers and healthcare professionals who are the heart of these communities. Not only are they actively learning from the members and the community experiences through a constant stream of two-way dialogue, they are actively learning from each other. These individuals are our greatest resource, and their desire to constantly learn and improve the communities they belong to is critically important to the health of our communities and the millions of people we reach monthly.
Appreciation for our advocates is also the inspiration for the annual HU Connexion conference, a two-day event that recently occurred, that brings many of our advocates together in one place to cultivate their connections with each other. This year’s theme, Face2Face, Heart to Heart, reinforces the concept of CoP in that it brings people with a passion for their health together, to share experiences and learn from each other. Almost 10 years of experience has shown us that meaningful patient engagement begins with our advocates and extends into a growing portfolio of highly engaged, open, online health communities that provide important and valuable ways for people living with chronic conditions to find what they want.(PV)
Editor’s Notes: 1 https://my.clevelandclinic.org/health/articles/4062-chronic-illness; 2 Wenger E, McDermott R, Snyder W. Cultivating communities of practice: a guide to managing knowledge. Cambridge, MA: Harvard Business School Press; 2002. p.304; 3 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4515005/
Health Union encourages social interactions that evolve into valuable online health conversations, helping people with chronic conditions find the information, connection, and validation they seek. The company creates condition-specific online communities — publishing original, daily content and continuously cultivating social conversation — to support, educate, and connect millions of people with challenging, chronic health concerns.
For more information, visit health-union.com.
