How Do Online Health Communities Play a Role in Shaping the Patient Experience?

Inspire’s Kristen Hartman explains how patient communities can support decision-making, AI validation and engagement across the treatment lifecycle.

Today, patients are looking far beyond the exam room for health information, emotional support and practical advice. A 2026 Pew Research Center survey found that 66% of Americans get health information from people with similar health experiences, while 22% use AI chatbots.

The trend also raises questions about trust and privacy. KFF found that 32% of US adults used AI for health advice in the past year, while 77% remain concerned about the privacy of their medical data.

Furthermore, digital health tools are now a routine part of how many patients manage their care. In 2024, 65% of individuals in the US were offered and accessed their online medical records or patient portals, rising to 75% among those managing a recent cancer diagnosis.

In an exclusive Xtalks Spotlight interview, Kristen Hartman, SVP of Strategy & Account Management at Inspire, discusses how online communities are shaping patient behavior and emotional well-being.

Drawing on more than 15 years of experience in digital health and patient-centered education, she also explains how these conversations can help life sciences companies better understand patient experiences and information needs across the treatment lifecycle.

From Support to Treatment Navigation

Online health communities are often viewed as support spaces, but Kristen explained that their role extends into treatment decision-making, disease management and daily coping after diagnosis.

“Research shows that online health communities improve patient activation, medication adherence, self-efficacy, and just the emotional well-being because they’re able to provide patients with trusted peer support and disease-specific information,” she said.

Engagement is also sustained. “We know that nearly 80% of people who are members of an online community engage at least weekly,” noted Kristen.

Patients use these communities to discuss treatment experiences, side effects, adherence challenges and access barriers, often before and during conversations with their doctors.

Treatment discussions are among the most common activities in patient communities, especially as members look to others with lived experience to understand whether a therapy may be helping.

“Peer consensus and lived experience significantly influence the perceptions of treatment and its effectiveness,” she said.

Kristen explained that online communities can also help patients manage the emotional impact of a diagnosis, especially when they are adjusting to what she described as a “new normal.”

AI Offers Quick Answers, But Trust Is the Challenge

As AI becomes more common in healthcare, patients are using AI tools to look up symptoms, treatment options and medical information. Kristen noted that AI can help summarize complex material and prepare patients to have more informed conversations with healthcare professionals.

“AI provides immediate answers. It helps summarize challenging and complex medical information… But the challenge is trust,” she said.

Online communities can play a different role. AI could be used as a starting point, then look to communities, clinicians or other trusted sources before making healthcare decisions.

“AI cannot replace that trust, understanding and lived experience that patients find in the online health community,” Kristen said.

Online communities are also beginning to use AI to better understand patient behavior at scale. Kristen explained that AI can help analyze large volumes of community conversations, search activity and engagement patterns to identify emerging patient needs, concerns, disease-specific interests and treatment topics.

The future, as Kristen sees it, is a combination of AI-enabled insights and human connection. Communities can help patients verify information, learn from others and feel more confident as they make care decisions.

Patient Insights Can Help Pharma Understand Real-World Needs

Life sciences companies often rely on demographic, claims and market data to understand patient populations. Online communities can add another layer by showing what patients are asking, what barriers they face and what kind of support they need throughout their care journey.

“What concerns are preventing someone from seeking treatment? What information are they looking for once they’ve been diagnosed? What motivates them to stay on therapy or what causes them to discontinue treatment?” she said.

Those questions can inform clinical trial design, educational content, access programs, messaging and outreach at key moments in the patient journey.

Community insights are not static. Patient sentiment, treatment questions and information needs can change over time as new therapies enter the market or as people move through different stages of care.

“I think what’s probably the most powerful is that the insights and the data generated from Inspire are continuously evolving,” she said.

By listening to ongoing patient conversations, companies can better understand what patients need to know, when they need to know it and what concerns may affect treatment decisions.

Communities Can Support the Treatment Lifecycle

Online health communities can support patients and life sciences companies at multiple stages of a treatment’s lifecycle, from early research to commercial education.

“What I think makes all online health communities so valuable is that they can support both patients and partners throughout the entire lifecycle of a treatment or a therapy,” Kristen said.

In early development, communities can help companies understand the patient experience, including unmet needs, disease burden and real-world challenges. As therapies move into clinical studies, they can help patients learn about trial participation and build awareness among people who may be eligible.

Around launch, communities can help companies understand what patients need to know and whether educational materials are clear, relevant and useful. Once a therapy is available, communities can support ongoing education, peer support and dialogue around treatment decisions.

Kristen said Inspire’s community includes more than 13 million patient- and caregiver-generated posts and more than 1.5 billion patient- and caregiver-generated words. She explained that these organic conversations can help life sciences teams better understand unmet needs, disease burden and real-world challenges.

She also described online communities as a continuous feedback loop that can inform work from research and development through commercial education. That dialogue can be especially important for people in medical deserts or those who have never met someone else with the same disease.

Kristen closed the conversation by emphasizing the emotional value of belonging.

“I would say I think the greatest benefit of online health communities is that they can transform a patient’s experience from, ‘I’m facing this alone,’ to, ‘I’m a part of a community that understands me,’” she said.

This article was created in collaboration with the sponsoring company and the Xtalks Editorial team.