June 12, 2025
Patients have long been viewed as a valuable resource for their peers managing similar health conditions. But as health literacy rises, driving more people to take control of their health, and as legacy media loses credibility and audiences to non-traditional sources, patient influencers are being thrust into an even brighter spotlight. Increasingly, patients are taking the lead as preferred sources for information and connection. As a result, these relatable, real-life individuals challenged with a disease or condition are reshaping the healthcare influence landscape.
While patient and HCP collaboration remains the gold standard for navigating a healthcare journey, limited time and access often leave patients searching for answers and support elsewhere. A recent survey reported that 51% of physicians spend 9-16 minutes with patients, which could have an impact on health outcomes. Patients, driven by a desire to empower others via personal storytelling, are actively closing the information gap, not just for themselves, but for entire disease communities.
Decoding Patient Influencers’ Role in the Healthcare Ecosystem
Unlike celebrity influencers, patients are typically micro- or nano-influencers who have cultivated smaller, more targeted communities that generate higher engagement through stronger stakeholder relationships. Their content isn’t flashy, stunt-driven or centered in a singular moment in time. It’s about everyday folks sharing honest, unvarnished first-hand insights and experiences, like Brooke Eby, a woman recently profiled in the New York Times who was diagnosed with ALS in 2022. Eby’s humorous insights on her personal struggles with this devastating disease have made her a vocal and visible voice for ALS on Tik Tok and Instagram.
The impact of patient influencers across digital platforms is undeniable. 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 they would most like to hear patient online community leader experiences or stories from pharmaceutical companies on social media.
Patients are increasingly turning to online communities and individuals they perceive as credible, particularly as trust in institutions wanes, and information overload is rampant. Patient influencer content is joining other new, non-traditional sources in the healthcare space, signaling the growing demand for curated, self-selected communication.
A recent Pew Research survey underscored how Reddit creates supportive patient communities, finding that 81% of users in specific health-related subreddits reported feeling less alone on their health journey. Amidst the sea of algorithmic social media feeds, health-focused newsletters on platforms like Substack and Beehiiv that bypass algorithms and allow for direct connection are experiencing a resurgence. Patient voices are becoming a primary resource, with some going to patient influencers first, before engaging a doctor.
For healthcare brands, patient partnerships create an invaluable pathway to connect to highly engaged communities. For those well-versed in navigating the traditional influencer space, working with patient influencers requires a fundamentally different approach. Since patient influencers are dealing with conditions that impact their daily lives, it’s critical to be understanding, respectful of their schedules and ensure their stories are told in a way that empowers. Sincerity, empathy and unwavering ethical considerations must be at the forefront, and fair compensation and ethical treatment are a must. Relationships should also be a two-way partnership where brands support their patient influencer’s advocacy efforts.
Discovery: A Strategic Approach
Finding the right patient influencers can be challenging, and ensuring they strike the right chord for communities is essential. GCI Health uses its unique Compass methodology, a healthcare-specific approach designed to deliver intelligence, insights, alignment and activation for all types of brands and organizations. Compass harnesses AI-powered technology to vet people who will have the greatest resonance among relevant audiences.
Once the right candidate has been identified, patience is vital for managing outreach and follow-up. Since these individuals are not professional influencers, they may not be consistently checking emails and are unlikely to have agents. They are also challenged with balancing their advocacy, chronic health issues and other life commitments.
Innovative technology tools now make it possible to measure the impact of patient influencer communications in real time. GCI Health leverages Decipher Health by Burson to give clients the ability to adjust, respond and react to maximize the impact of patient influencer messaging. Decipher Health was created in partnership with AI company Limbik and is offered through PR Studio in WPP Open, WPP’s intelligent marketing operating system powered by AI.
Co-Creation: A Supported Process
Typically, patient influencers are not in the business of content creation. While their focus is to post honest, candid content, they often need guidance, understandably, around the more complex aspects of content creation like long-form video, text overlay and production best practices (lighting, sound, etc.).
A personalized approach that’s supportive, providing whatever help is needed throughout the partnership process, helps build rapport and establishes trust right from the get-go. Sponsored healthcare influencer messaging and compliance needs can be complicated. Collaborative brainstorming, problem-solving and — above all else — respect for the patient’s unique skills and perspective are essential for building co-created, compliant content that resonates.
Looking Ahead: The Future of Healthcare Influence
Patient influencers help bridge gaps — between patients and healthcare providers and between patients and the glut of traditional and non-traditional media and information sources. They foster a stronger sense of community, empower individuals to take control of their health and offer reassurance to help lessen the burden of living with a disease or chronic condition. Leveraging their connections to their niche communities helps brands inspire trust and boost credibility.
Looking ahead, brands will increasingly seek to contract patient influencers who have delivered positive impact for longer-term programs, versus a “one and done” approach. Audiences are also looking to see sustained advocacy from their chosen influencers.
The heightened interest in patient influencers signals a fundamental shift towards a more collaborative and patient-centric healthcare ecosystem, where patient voices play a vital role in shaping health outcomes. As healthcare influencers continue to gain prominence, and as the spread of misinformation continues to undermine the search for credible information, this breed of influencers will become increasingly critical in driving healthcare decision making for their peers facing similar health challenges.