Social media. It’s becoming an integral component of our social lives: whether we’re stalking old schoolmates, staying in touch with friends or family, receiving breaking news from the other side of the world or watching videos of baby animals. The point is: millions of people are sharing their opinions and experiences across the world every day.

Social media is increasingly being used as a platform for sharing health experiences with others who are going through similar situations. Online patient communities are becoming more prevalent: in fact, 38% of chronic condition patients say they don’t consider their doctor as a “regular information source”, and instead often turn to social media for information and support on their condition. Social media provides a wealth of information on the lived experiences of patients with various conditions.

Introducing our self-funded study
As part of a self-funded study at HRW Eavesdrop our social media listening team, we interviewed an impact influencer and invasive lobular carcinoma survivor, who uses social media to share her experiences of living with and recovering from stage II A invasive lobular carcinoma. We learnt how her life has been impacted by both her diagnosis and the community that she has created, while also getting a glimpse into the world of online patient communities.

WarriorMegsie is an impact influencer based in the US who started writing her blog, Life on the Cancer Train, to help her process and reflect on what she went through. After gaining a following, she branched out to X (formerly Twitter) and Instagram, where she could interact and connect with those in the community that she was building.

From our conversation we learned 3 key points about the patient voice on social media.

AUTHENTICITY: Megsie was driven to share her story on social media because no one in mainstream media was talking about the rage and depression that comes with a cancer journey. She wanted to provide an honest voice that others could hopefully relate to, which is exactly what she ended up doing. She found that she generates most engagement when she conveys her authentic self and raw emotions through her platforms.

In traditional market research settings, patients are often put in an artificial environment where they may not feel comfortable opening up and using their real voice. The opinions and experiences expressed on social media could provide insight into how patients actually think and feel, as opposed to how they think the moderator wants them to think or feel.

“Why is no one talking about the rage, why is no one talking about the depression, the anxiety? I was not seeing that really anywhere. And so I just started writing…I’ve never lost my personality. I’ll bring that into everything. And I think this is why I have this impact: I make a point of just being me.”

DISCOVERY: In our conversation with Megsie alone, she uncovered all kinds of aspects of living with cancer that we hadn’t even considered. She told us how social media gave her a platform to start conversations about the more taboo experiences that go under the radar, such as the infertility that resulted from her treatment, and the political intersection between race and cancer.

When setting out to conduct market research, we’re often biased by our expectations and shape research materials according to what we think we’re going to find. On social media, we can explore what is most critical to patients, opening us up to surprises that could provide a crucial opportunity for shaping brand strategy.

“I have been targeted. I have had people say race has no place in the cancer space, and of course it makes me upset. But you know what? It’s not gonna shut me up.”

ABUNDANCE: Megsie’s social media platform has allowed her to connect with thousands of people. She has been able to watch the direct impact of her shared experiences on others in her community, inspiring more people to share their story. She has even been able to connect with doctors, fostering learnings between patients and physicians. In the future, she predicts this will only continue to increase, with more focus on rare disease types.

With the growth predicted, healthcare social media is only going to become a more valuable source of real-world data, spawning more nuanced patient communities, and therefore becoming more useful to a wider range of research objectives.

“Honestly I never thought I would find such an amazing Cancer community on Twitter, because it seems so vast and so large, so how do you really connect with people. You know because I started out with 1 follower and now I’m over 5600.”

Concluding Remarks

Social media can complement traditional primary market research by providing insights that are closer to the patients’ honest truth. The patient voice, as it appears on social media, can provide us with unfiltered opinions on a large scale, without being biased by our hypotheses. This can help us gain a more comprehensive understanding of the patient experience and optimise research insights.

If you’d like to speak to the team to find out more, please reach out at hrw-eavesdrop@hrwhealthcare.com

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