Changing Landscape: The Role of Patient Influencers in the Healthcare Ecosystem
Trishna Bharadia
Patient Leader
Richelle Horn
WEGO Health

he discussion around patient influencers is becoming increasingly prominent within the healthcare ecosystem. Who are they? What role do they play in developing better patient outcomes and healthcare improvements? How do they positively impact health decisions? This article aims to explore these questions and provide key insights into how the biopharmaceutical industry can and should be collaborating with this important stakeholder group to create positive change in healthcare.

Patient advocates, leaders, and influencers have existed for decades, serving as respected voices and experts within patient communities and more recently on social media. Despite their pervasive presence and readiness to work with the healthcare industry, organizations have been slow to take notice of these powerhouse patients and the value they bring to the healthcare conversation. Across oceans and organizations, the definition of a patient influencer and their role within healthcare varies greatly, and the rules of engagement for the biopharmaceutical industry differ as well.

A shared definition and explanation of the role that patient influencers can play in the industry at large is needed for the healthcare ecosystem to move forward towards a common goal: better outcomes for those affected by health conditions. This is particularly important now, as industry has seen a more rapid adoption of patient influencer marketing during the COVID-19 pandemic.

Who is a Patient Influencer?

Patient influencers are the most visible and trusted health consumers. They are super users of the healthcare system, living with or caring for those living with chronic conditions. Their goal is simple: to raise awareness of and help others within their condition communities. Patient influencers do this across a variety of platforms, including social media, blogs, podcasts, political activism, and other forms of media by sharing stories, providing educational information, and offering emotional support.

Many patient influencers do not see themselves as influencers, but rather as advocates helping others through their healthcare journeys. However, their loyal audiences and massive footprint within their conditions mean they indeed qualify as influencers.

Who is NOT a Patient influencer?

There is a big difference between celebrity/lifestyle influencers and patient influencers. While celebrity/lifestyle influencers tend to focus on a broad range of topics, patient influencers are dedicated primarily to topics of healthcare, often focusing on a single disease area.

According to Influencer Marketing Hub, influencers fall into four categories:

  • Nano influencers (<1,000 followers)
  • Micro influencers (1,000 – 40,000 followers)
  • Macro influencers (40,000 – 1M followers)
  • Mega influencers (>1M followers)

In our experience, patient influencer follower counts are generally much lower than those we mostly associate with celebrity or lifestyle influencers, who will often fall into the “mega,” “macro,” and top end of the “micro” categories. However, the niche audiences of patient influencers are much more deeply engaged.

Research from SocialPubli suggests that as influencer size decreases, average engagement rate increases, with micro influencers having a seven times higher engagement rate than macro and mega influencers, and nano influencers having a ten times higher engagement rate.

Celebrities and mega influencers can be patients, too. However, patient influencers possess a deep level of trust from their audience that celebrities and lifestyle influencers can’t compare to.

What Role Do They Play?

Patients look to patient influencers for information, guidance, and support. They also look to them as a source of inspiration for navigating their own way through a health condition.

In a WEGO Health survey, 89% of patients said that watching what patient community leaders or experts are sharing and discussing is most important to them on social media. Additionally, 74% of these patients said that they would like to hear patient online community leader experiences or stories most from pharmaceutical companies on social media.

WEGO Health research also reveals that when information about a medical condition is shared by a trusted patient influencer, 92% of their followers are likely to ask their physician about the information. When medication information is shared, 89% are likely to ask their physician about it. This speaks volumes of the influence they have on their communities.

The privilege of this influence comes with great responsibility, which patient influencers take seriously. Healthcare is a deeply personal journey and influencers understand that each individual’s experience is unique. In a recent webinar discussion around sharing of information, the topic of representation was top of mind in patient influencers’ likelihood to share information with their followers.

“Is this information something that represents me or others that are in the community that look like me or look like someone that I care for, a friend, a loved one?
– Dawn Morgan, Multiple Sclerosis Patient Leader

While influencers set a high bar to serve as a safeguard of information, the ultimate safeguard, of course, is the doctor. Unlike virtually every other consumer product, the patient is not at liberty to simply purchase a new drug or device that they have learned about through a peer. Therefore, the influencer model is quite different in healthcare, with the doctor being the final check and balance in diagnosis and treatment decisions.

Where Do You Find Them?

The world of patient advocacy spans across all spectrums of the patient experience, making patient partnerships easier than you think. Try searching a disease hashtag, like #MSWarrior or #LupusFighter on any social media platform and you will quickly find a buzzing community of engaged patient influencers. A more general search can include #patientleader, #patientinfluencer, #patientadvocate, or #healthadvocate.

And while social media may be the most accessible platform to explore, it’s important to also consider patient groups, industry conferences, and even word-of-mouth from colleagues and patients you are already working with. There are also online patient advocacy networks emerging, such as WEGO Health and the EUPATI fellows, which bring together lots of patient influencers in one place.

Legitimacy is Important

Verifying a patient influencer’s legitimacy is an important but relatively easy thing to do. While one may think follower count confirms an influencer’s credibility, it is important to remember that patient influencers typically have niche audiences, so follower count is not the best metric for legitimacy in the health space.

Instead, it is vital to do due diligence. While this may take more time, it is worth the effort to build long-term relationships.

As a best practice, it is important to review a potential candidate’s social channels, profiles, blogs, and websites within the last three months to ensure neutral, non-competing, and non-conflicting content.

This research allows companies like WEGO Health to define influencer by the reach, relevance, and resonance of the individual:

  • Reach: How broad of an audience do they reach on social media?
  • Relevance: How deeply do they focus on a specific condition topic?
  • Resonance: How scalable is their content through organic shares?

Of course, once you have identified potential partners, it is crucial to have a discussion to learn more about their experience, skillset, and availability. One can ask for their CV and referrals or check LinkedIn to see recommendations or endorsements from people who have worked with them. You can think of the process as any typical interview. Just remember: they are interviewing you, too!

How Can Industry Collaborate?

The best way to collaborate is to offer patient influencers a seat at the table. That seat should not be that of an observer; it should be as an equal partner with other stakeholders, recognizing the value, expertise, experience, and skills that patients can contribute to the advancement of healthcare.

Areas in which potential partnerships can be developed include:

  • clinical trial design and recruitment;
  • patient support program design and validation;
  • patient journey mapping or condition landscape insights;
  • HCP or consumer marketing insights;
  • HCP or consumer marketing campaigns;
  • co-created content such as patient support materials, patient stories or testimonials, and disease education materials;
  • brand ambassador programs or mentorship programs; and
  • access, support, and reimbursement program insights.

A great place to start is by contracting patient influencers in an advisory board capacity to ensure there is an esteemed set of patients at the table for critical conversations throughout the lifecycle of a brand.

“If we’re not getting the reactions from our patient influencers and leaders in our space that are ultimately speaking to our patients from the beginning, then we’ve missed the mark”
– Brittany Mathes, Associate Director, Multiple Sclerosis Patient Marketing, Bristol Myers Squibb

Five Key Considerations for Patient Influencer Collaboration

  1. Compensate fairly. Like any expert, patient influencers should be compensated for their time. Refer to national fair market value guidelines to understand what is appropriate. In the US, the National Health Council Patient Engagement Fair-Market Value Calculator is a reputable source.
  2. Not for sale. There is no price tag for the trust that patient influencers have built within their communities. Be mindful of projects offered to patient influencers and be sure that they align with their mission and brand and that requests are ethical.
  3. Implement advice or provide rationale as to why not. Listen to and heed advice patient influencers provide as you are able. If regulations pose a barrier, communicate the guardrails. Transparency will help build rapport and trust and allow the partnership to be more fruitful over time.
  4. Relationships matter. Just as you build relationships with physician key opinion leaders, use the same approach with patient key opinion leaders. Patients are eager to form partnerships with pharmaceutical companies that are lasting and transformational.
  5. Representation is key. Look for diversity in representation – not just in race and ethnicity, but also in age, gender, disability, sexuality, rural/urban location, socioeconomic status, and health literacy levels. Consider your patient population to build strong and lasting partnerships.