From Myspace to Instagram, since the dawn of social media in the late 1990s patients have been using a variety of online platforms to search for medical information, connect with other patients and feel supported and included within a community.
There are a plethora of social media applications and websites available for patients to use. These can be broadly grouped into general purpose online social media networks, such as Twitter and Facebook which patients can easily access and connect with other patients, and specific patient virtual support groups, designed to create a community of like-mind patients, such as ‘Patients Like Me’ and ‘DiabetesSisters’.
Regardless of the platform, patients are initially using these networks to access healthcare information from “trusted” peers, which often progresses to being an active member of a virtual patient community. These virtual communities represent authentic patient conversations, so it is vital for healthcare companies to have a complete understanding of these spaces. The topic and nature of conversations around diseases and drugs provides in-depth patient understanding and importantly exposes any negative (and sometimes dangerous) misinformation.
We recently published an article about physician social media influencers (key online influencers) and the opportunities for pharma. Social media analysis is an extremely broad and multifaceted topic, so in this next article we are going to focus on another key phenomenon; the patient social media influencer, and why the healthcare industry needs to understand, identify and profile them.
What are patient social media influencers and why are they important?
Some patient social media influencers are patients, caregivers and non-healthcare professional individuals who have created a significant social media audience due to their focus on a disease, condition or general health and well-being. Others are patient celebrities with a large social media presence who want to raise the profile of the condition. Both types are trusted and respected and can authoritatively share information within a community and generate conversation.
A recent WEGO Health survey in the US (which does allow direct-to-consumer advertising), showed that 14% of patients trust a lifestyle influencer, however 51% trust healthcare patient influencers. Furthermore, 85% of patients trust a pharmaceutical brand or advert if promoted by a patient influencer.
Personal motivations of patient influencers are varied and multifaceted, for example, some see themselves as a disease and patient advocate, altruistically benefiting patients. For others, motivated by the social capital gained from being in the public eye, there may also be a degree of commercial advantage from their activities. There are varying types of patient influencers that can be categorised based on the size of their social media audience:
Micro healthcare influencers
These influencers have a small number of followers but cultivate targeted communities, generating higher engagement rates and build stronger relationships with stakeholders. Some may be unpaid or independent from pharma commercial activities. They can be a patient advocate or have informal partnerships around disease awareness.
Celebrity patient influencers
A healthcare influencer can have millions of followers, and their influence can snowball by appearances in mainstream broadcast media and newspapers. Dame Deborah James (who sadly passed away from bowel cancer in June 2022) shared her journey since her diagnosis in 2016. She was praised for her openness, fight and drive to not only battle the disease, but also to share vital information such as warning signs people need to look out for with regards to bowel cancer.
Many celebrities have opened up over recent years about mental health struggles and battling depression. Stephen Fry is President for the charity ‘Mind’. In 2006 he created the documentary ‘The Secret Life of a Manic Depressive’ in which he shared his experience of suffering with bipolar disorder. He campaigns tirelessly to help raise awareness and challenge the stigma surrounding mental health difficulties. Another example is Janet Jackson, who revealed in an edition of ‘Essence’ magazine “The struggle was intense. I could analyze the source of my depression forever. Put it all together and depression is a tenacious and scary condition.” By speaking out, these people, who have such a large following and therefore mass influence, are raising awareness about these conditions and campaigning to make a difference.
Benefits for the patient
Patient influencers can provide ongoing disease information from physicians who don’t have the necessary time or resource to provide it. They can promote positive disease management information encouraging and normalizing positive healthcare behaviour. Patients can feel empowered by learning and engaging with these authoritative but empathetic patient leaders.
The online health community allows patients to be up-skilled by influencers or expert patients, deepen knowledge about treatment options and gain new perspectives. These spaces also play an important role in the emotional journey of patients and their mental well-being, gaining reassurance from hearing that what they are experiencing is normal and what to expect along their disease journey in the future.
A major concern for healthcare companies and providers is disease and drug misinformation being spread by social media influencers. During the recent COVID-19 pandemic, information was spread online from thousands of anti-vaxxers, which clearly influenced perceptions of vaccinations offered by pharma companies and impacted take-up.
It is important to remember that patients are not physicians. HCP influencers are qualified medical professionals and have the expertise and judgment to communicate beneficial disease information. However, patient social media influencers can have a misunderstanding of a disease and (often unintentionally) communicate incorrect information. Social media and the online space by its very nature promotes free sharing of information, therefore it can be difficult to ensure evidence-led, accurate and safe information is communicated.
Opportunities for pharma and healthcare companies
Although there are challenges, there are numerous opportunities and benefits for healthcare companies in the online influencer space. Firstly, it offers the ability to tap into the influencer-led conversations that are generating the greatest impact. These insights can help pharma and healthcare companies adapt their messaging and information sources to cater to true patient needs.
As mentioned, one concern is misinformation or dangerous conversations being spread, therefore, these insights can be used to develop strategies to combat these incorrect messages. If healthcare companies and providers aren’t up-to-speed and monitoring online conversations, they are missing an opportunity to steer the discussion in a positive direction.
Furthermore, there can be opportunities to engage and build relationships with influencers and patient leaders. Patient and healthcare influencers could be included on advisory boards, to support the development of treatment solutions and patient support programmes by providing a highly patient-centric perspective.
Bringing patient influencers into an engagement strategy
Having explored the benefits and challenges with regards to engaging and working with patient influencers, if a healthcare company decides to maximise the opportunity whilst carefully navigating the challenges, the question becomes, how we do identify, profile and map these influencers?
Introducing influencer ID
We have developed an effective approach for investigating, analysing and profiling online influencers in the healthcare space to determine how influential their digital footprint is across social media, websites, blogs, forums, journals, online seminars and other digital channels. Our tried-and-tested approach identifies influencers to reveal important metrics, such as: Their audience, Influence, Frequency, Line of focus, Interaction and Engagement.
We listen to community conversations, what topics are generating interest and who people are listening to most in these conversations. Once the patient influencers have been identified, pharma companies can start to build a strategy for engagement. Partnerships can be developed with regards to patient support and brand ambassador programmes, patient support materials, testimonials, disease education information or even onboarding them into various marketing campaigns. To build a trusting, mutually beneficial relationship, it is imperative to listen to the patient, compensate them for their time and be transparent with regards to messaging but also if there is a regulatory obstacle, communicate this to them.
The patient influencer relationship is just as vital as engaging with physician key online influencers, so take time to understand them, then assess the opportunity for engagement to benefit the patient and pharma company simultaneously.
Experience of patient influencer research at Research Partnership
As a business, we have started to see significant interest in online influencer mapping research across a range of therapy areas. Our tried-and-tested approach means we have been able to provide pharma companies with essential recommendations on how best to involve influencers in their development plans. To find out more about our offering please contact us now.
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