8 March 2023

Advice from a patient influencer

Ngozi Okoli

During the BHBIA Winter Conference 2022, we hosted a seminar with patient influencer Mesha Moinirad, who posts as ‘MrColitisCrohns’. We wanted to explore his life as a patient influencer and uncover his motivations, his challenges, and his forecasts for the future landscape. From our conversation, here are four key recommendations for pharmaceutical companies and research organisations to adopt when engaging with patient influencers

Put yourself in their shoes

We typically see patient influencers through our computer or phone screens. We flick through images and videos of them online as they share their private lives with us and their large following. Because we can access their lives on demand, it can be easy to lose sight that they are real people, with real emotions and real feelings.

Mesha highlighted the importance of approaching patient influencers with full transparency, so that you’re completely clear about your intentions regarding any possible collaboration. What’s more, think about the language you use, and whether it’s easily understood outside your own sphere because what may be your everyday vocabulary will probably not be theirs. To ensure that your communications connect with them, and to increase your likelihood of a positive response, avoid industry jargon and abbreviations, and use a friendly and accessible tone.

Go small, stay close, be consistent

There are many ways to engage and leverage the power that patient influencers hold. We believe that the best way to foster trusted, meaningful partnerships is to collaborate with just two to three influencers, and engage with them closely and consistently.

Mesha’s success illustrates this very clearly. He started his journey on Facebook, sharing snippets of his early diagnosis journey as a way to vent and make sense of his experiences. Although he had built a following on Facebook, he transitioned to Instagram and, later, onto TikTok. Here, he began posting pictures and short videos of his reality living with a stoma; this included content about his stoma, bag changes, and his bag and product preferences.

By posting content regularly and partnering with a single brand, Mesha has built a strong community of followers who value and trust his opinion and his reviews of stoma bags and products.

Instead of engaging sporadically with multiple patient influencers, collaborate closely and consistently with two or three carefully-chosen influencers who produce regular content for your brand. This consistency will let their followers know that they trust and value your brand, which should gradually shift their followers’ perception of your brand in a positive way and build greater brand loyalty.

Choose your platform carefully

Every week we open our phones and find a new social media app competing for our attention. Knowing which platform/s to use to engage with patient influencers is key – so which one/s should we prioritise?

Facebook is worth considering when exploring parent and caregiver opinions, especially when investigating rare diseases. It facilitates multiple support groups, some of which are open to silent observation from members of research agencies and pharma companies.

However, Instagram and TikTok are increasingly becoming the go-to platforms for HCP and patient influencers. Having open access to their content lets you observe their feelings about their condition and the devices/products they use. This allows you to explore each influencer’s impact on patients and users, and assess their suitability to your brand.

Reduce the risk of misinformation

Misinformation is the spread of false or inaccurate information and, unfortunately, is pervasive throughout social media and online platforms. In the past, high-profile cases have demonstrated the central role that influencers have played in spreading misinformation; the inaccuracies that were spread about the COVID vaccines show how damaging misinformation can be.

It’s important to be aware of this risk when collaborating with patient influencers. However, it can be mitigated by providing patient influencers with clear product briefings which can share some ideas on what can be said or written about the product. Ideally, the briefings should also contain contractual agreements and outline the influencers’ responsibilities; for example, to cover instances where the product is misrepresented. Although companies have no desire to impinge on the influencers’ creativity, they need to be sure that the content they post accurately reflects the company and its brand.

Patient influencers are quickly becoming a significant part of brand campaigns, marketing plans and, most importantly, market research insights. In a landscape where most end-users are likely using social media platforms and getting information and recommendations about their conditions from patient influencers, it’s imperative that companies understand how best to engage with them.

Get in touch with Vox.Bio to learn more about how you can unlock the power of Patient Influencers.