It is an understatement at this point—and hopefully glaringly obvious to everybody reading this—to say that online health communities can be particularly meaningful for people impacted by chronic health concerns. These communities have been shown to be especially impactful when they are designed and cultivated to create a safe place for people to engage, at any point in their journey, as well as focus on “meeting people where they are” rather than driving behavior change.

It might even be understood by many that these communities also provide measurable benefits for partners, including biopharma companies, who can leverage the reach and engagement within these condition-specific environments. This, in turn, helps partners create smarter, more effective patient-centric programs for the people who are appropriate for their treatments.

What might not be fully comprehended, however, is the full scope and depth of understanding that can be garnered when people have access to the information, validation, and connection they need. For example, at Health Union, by actively listening to conversations—many emotional, many exhibiting comfort in shared experiences—within 19 chronic condition-specific online communities, we are able to understand often nuanced aspects of living with these conditions that are not obvious to many and decipher various patterns in patients’ journeys.

Combining active listening within our communities, which includes each community’s social channels, and the results of our annual “In America” surveys that are conducted on each community, we have an immersive understanding of patients’ specific wants and needs. This information, in turn, can make our partners in the pharma and biotech spaces much smarter as they develop marketing programs. Most importantly, it ensures that partners have the information they need to truly put patients first.

The following examples shed light on some scenarios that may not be obvious on the surface but can have a considerable impact when planning patient programs:

1. Different types of cancer can yield different emotional responses.

Oncology-specific communities magnify the need to understand various aspects and realities of the patient journey, from treatment options to emotional well-being to patient sensitivities. With lung cancer, for example, there are challenges associated with shorter survival times and stigmas that have a significant impact on advocacy efforts and overall patient care. However, through LungCancer.net, we have learned that the presence of a cancer survivor is inspiring. We have seen an amazing amount of support and connection among participants as they bond with each other, grieve together, and provide comfort in the moments when they need it most.

While lung cancer patients feel stigmatized, skin cancer patients tend to feel frustrated. The results from our Skin Cancer In America 2018 study, as well as observations from SkinCancer.net, revealed a harsh reminder that people living with skin cancer struggle with perceptions that their condition is less serious than other types of cancer. Similarly, we often observe people in our SkinCancer.net community sharing anecdotes of people downplaying their cancer experiences, as well as advice on how to cope with this frustration.

2. Frustrations with chronic conditions are often shared, but perspective varies based on point in journey.

The content and conversation generated within these communities fosters authentic social reactions and interactions that reveal realities about people’s experiences that we might not typically consider.

For example, in an article titled “My Muddy Multiple Sclerosis,” a MultipleSclerosis.net contributor painted a vivid picture of what his MS felt like. To him, simply walking was so difficult that it felt like he was wading through mud—a concept that resonated with many in the community. One commenter said MS felt like walking through lava, with the legs feeling like they were burning. Another commenter said it felt like, at times, there was too much gravity, like something unseen by anybody else was just pushing down. Regardless of when these different people were diagnosed or their age, they could all relate to the content but in often vastly different ways that reflected their own experiences.

Insights like this might not be easily gleaned from speaking to a few patients one-on-one. However, with content that is relevant to a sizeable amount of people’s experiences, it becomes easier to see how people at different stages of their journey with the same condition may have different perspectives, along with shared feelings and frustrations.

3. People with cancer are more positive about treatment plans than those with other chronic conditions.

Through the results of our In America surveys, we have found that cancer patients have more positive perspectives about their treatment plans than patients living with non-cancer chronic conditions. For example, more than seven in 10 Skin Cancer In America 2018 patient respondents said they felt their condition is under control with their current treatment plans (represented by the top two boxes on a seven-point scale). The rest of the 2018 cancer-specific surveys show a similar perspective, with 59%—among lung cancer patient respondents—representing the lowest range of feeling their condition is under control.

However, with a high of 36% of MS In America 2018 patient respondents and a low of 6% of IBS In America 2018 respondents, the perspective is starkly different—and more negative—within Health Union’s 14 non-cancer communities. Although the reasoning behind the disparity can vary by individual, we know from listening to conversations in our cancer communities that there is often an enforced mindset that cancer treatment is going to be hard and that treatment options might also be more limited. This allows individuals to set their treatment expectations in a way that individuals dealing with other chronic concerns might not necessarily be doing.

  • Amrita Bhowmick

    Amrita Bhowmick, MPH, MBA is Chief Community Officer at Health Union. Amrita combines business acumen and public health expertise to create and cultivate Health Union’s content-rich patient communities, with her master’s degree in public health and many years in pharmaceutical marketing and analytics. 

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