Cancer, Connections, Community:
The art of bringing people together
By Amrita Bhowmick, MBA, MPH
Chief Community Officer – Health Union
May 23, 2018
Getting any type of diagnosis is life-changing. When that diagnosis is the “C” word, there’s a heaviness that raises a whole range of emotions and questions often relating more to mortality than morbidity–not to mention there can also be a fair amount of guilt associated with survival. While great strides have been made in the availability and effectiveness of cancer treatments, the psychosocial aspect associated with having cancer hasn’t kept pace. And, regardless of individual understanding about the effectiveness of treatment, the emotional response and realities remain extremely burdensome.
Emotional support can play an essential role in any condition, and online health communities have emerged as one way for people to cope, particular in the cancer communities. There are diverse approaches and philosophies to creating online communities, which can be important to ensure people have options. The Social Determinants of Health highlights how environmental factors affect health and the importance of creating conditions that promote good health for all Americans, equally.
At Health Union, our approach to developing communities was, is, and always will be based on “meeting people where they are” rather than driving behavior change. Through active listening, paying attention to needs and not focusing on changing behavior, we are able to give people what they want, rather than trying to make them want something else. In doing so, we cultivate communities that create powerful bonds with people that continually bring them back.
Across all 18 of Health Union’s communities, we have seen many examples of the impact of this approach, not only through a steady stream of new and repeat visits but through a variety of reactions and emotions ranging from the honest frustrations of living with a chronic health condition to the relief that comes in knowing a person isn’t alone. Comments such as, “I thought I was the only one!” or “I’m so glad to know I’m not alone” reinforce the importance of creating connections where there is an unmet need. With each community being led by a dedicated team, the team is aware of particular needs and can share unique content that offers something for everyone.
In 2016, we leveraged our years of experience within various chronic autoimmune and primary care conditions (MS, RA, Asthma, Migraine, IBD, IBS, Psoriasis, etc.) to launch our first cancer community, LungCancer.net. With lung cancer specifically, we have experienced that there are challenges associated with shorter survival times and stigmas that have a significant impact on advocacy efforts and overall patient care. Alternatively, we have learned that the presence of a cancer survivor is inspiring and we have seen an amazing amount of support and connection among community members as they bond with each other, grieve together and provide comfort for one another in the moments when they need it most.
Subsequent launches of ProstateCancer.net, SkinCancer.net, BladderCancer.net, and Blood-Cancer.com, have revealed some similarities as well as differences, reinforcing that diagnoses and individuals are unique, yet the need for information, connection and validation remains among all cancer communities. For example, while lung cancer patients feel stigmatized, skin cancer patients tend to feel frustrated. The latest results from Health Union’s Skin Cancer In America 2018 study, an annual survey conducted on the site, revealed a harsh reminder that people living with skin cancer struggle with perceptions that their condition is less serious than other types of cancer. Results like this remind us why these communities are so important and keep us apprised of the type of support we need to be providing to validate experiences and ensure people have a safe place to go.
Health Union communities are designed to create a safe place for anyone and everyone, at any point in their journey. Even individuals with great medical and personal support systems may find themselves online with questions they prefer to ask in a private setting. The model we’ve created not only allows people to find what they need but also allows them to engage at the level of their choosing, whether it’s to read an article, share a story, post a comment, read a response, or engage in a full discussion.
In addition to the comprehensive, annual In America surveys within all Health Union communities, we often conduct cross-site surveys that help us address issues and questions that we observe. The great strides in cancer diagnosis and treatment have led to certain cancers becoming more chronic in nature, which can make the information, connection and validation we offer within community, increasingly relevant. As well, the burden, stress and impact on health for family caregivers is an important unmet need to address, as their health risks are often overlooked and underserved.
Each diagnosis and each condition is unique. There is a lot that we can learn across cancer communities that will help us better serve the unique needs and preferences of the individual communities. With the knowledge gained from the model we employ, our dedicated teams ask the right questions and will continue to create content and offerings that meet people where they are and continue to grow and strengthen Health Union communities.