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Lately, I’ve been spending more of my time at Sago, or on Forsta or Civicom, interviewing patients and caregivers in support of our clients' march towards a more consumer-centric business model. And the more conversations I have, the more I’ve come to realize that this shift demands a far deeper change than most commercial and insights teams may recognize. The patient journey is no longer just clinical or emotional; it is increasingly informational, and the rules governing trust and truth have fundamentally changed.
We operate in a world where information is infinite, credibility is fragile, and patients are becoming their own adjudicators of truth. As one interviewee recently told me: “I rely on layers of information.” That phrase has stayed with me, and I believe it signals an emerging truth paradigm that will reshape how we communicate, educate, and support patients moving forward.
In high-engagement disease categories, especially rare conditions, patients and caregivers are not passive recipients of information. They are detectives. They search relentlessly, they cross-reference, and they test what they are told against their lived experience and the experiences of others.
Importantly, this applies not only to patient communities and advocacy sites, but increasingly to AI tools. We are hearing more and more that patients utilize platforms like ChatGPT to:
This behavior is accelerating, and it represents a profound moment in the evolution of healthcare information flow. Whereas web search once democratized access to information, AI is democratizing synthesis, interpretation, and comparison of that information.
Historically, patients looked to physicians as the definitive source of truth. Over time, they expanded that circle to fellow patients, patient communities, and advocacy organizations. Certain websites tend to be seen as more trustworthy, e.g., Cleveland Clinic or Mayo Clinic. Today, truth is validated through triangulation across multiple voices -- clinical, lived, and increasingly, digital intelligence.
Patients aren’t rejecting expertise; they are contextualizing it. They recognize bias -- commercial, experiential, even emotional. They know the internet contains misinformation and that patient forums can amplify fear or fringe perspectives. A few even see a ".com" suffix on a website as automatically biased. In response, they’ve become more discerning. They don’t want a single authority. They want alignment across sources.
As one rare-disease patient explained, he appreciates industry-sponsored education much, much more when physician experts and other patients are present. Hearing from both allows him to calibrate. He isn’t looking for perfection; he’s looking for coherence. And he’s comfortable rejecting information that doesn’t survive multi-source scrutiny.
In this new environment, truth is not delivered -- it is constructed.
This evolving behavior carries meaningful implications for those building direct-to-patient communication strategies:
Patients don't trust singular voices -- so don’t be one. Partner more intentionally with clinicians, advocacy groups, and patient leaders. Forums, advisory boards, and content platforms should incorporate diverse voices by design.
Patients increasingly behave like analysts -- comparing, validating, weighing signals. Meet them there. Provide clear sources, transparent citations, and encourage cross-validation. It builds trust, not risk.
More and more patients and their care partners are bringing generative AI into their care journey. Consider how your content is structured and whether your educational materials are AI-friendly. The question is no longer whether patients will consult AI; it’s how well your information will be interpreted when they do.
Commercial teams must think less about messages delivered and more about consistency demonstrated. When patients see alignment among physicians, peers, and industry, belief forms naturally.
We are entering a world where credibility is earned through transparency, collaboration, and proof of coherence -- not assertion of authority.
The patients we serve are not challenging expertise; they are modernizing how it is verified. And for those of us shaping communication and engagement strategies, the opportunity is profound: to meet patients in this new truth paradigm and build trust not by controlling the narrative, but by participating in an ecosystem of voices that together illuminate the path forward.
If we embrace this shift, we will not only communicate more effectively -- we will support patients more meaningfully.
