For much of modern drug development, patients were treated as passive participants, and clinical trials focused largely on clinician-reported measures that did not always capture burden, daily function, or meaningful improvement from the patient’s point of view. As the industry increasingly recognizes the importance of lived experience, there is a growing need for digital platforms that illuminate what patients actually feel, value, and struggle with during treatment. The PPD™ clinical research business of Thermo Fisher Scientific meets this need through HealthUnlocked™, the world’s largest health-focused social network, and PPD CorEvitas™ Clinical Registries, a suite of independent longitudinal registries. Together, these platforms help translate the realities of patient experience into insights that strengthen clinical decision-making and support the design of more relevant, more inclusive clinical trials.
Connecting Lived Experience with Clinical Evidence
A fundamental tension has long existed at the heart of medicine. Physicians evaluate diseases through clinical, laboratory, and imaging-based measures, yet patients live those diseases through pain, fatigue, limitations in daily activities, emotional strain, and the difficult tradeoffs of long-term therapy. Clinical scores, biomarkers, and physician-reported assessments are essential to guiding care, but they rarely capture the true reality of what it means to live with a chronic condition. This disconnect has consequences, both for the effectiveness of individual treatments and for the broader drug development ecosystem.
At the same time, clinical research faces mounting pressures. Trial protocols are becoming more complex, competition for participants is intensifying globally, and sponsors are under increasing scrutiny to recruit diverse and representative study populations. Meanwhile, patients are more digitally savvy than ever and increasingly expect access to high-quality information, meaningful engagement with peers, and personalized support that extends well beyond the clinic visit. Many turn online not only for education but for reassurance, community, and guidance on how to navigate their disease in daily life.
The PPD clinical research business of Thermo Fisher Scientific has developed a dual-platform strategy that speaks directly to these challenges. HealthUnlocked provides patients with a safe, moderated community in which they can connect with others who share their condition, exchange experiences free of judgment, and contribute their voices to research. CorEvitas Clinical Registries capture detailed, longitudinal real-world data (RWD) from clinicians and patients across a growing range of disease areas. Together, these platforms offer a powerful combination of lived experience and structured clinical evidence — two sources of insight that have traditionally existed in isolation but which when connected can significantly improve patient outcomes and strengthen the quality of clinical research.
How Digital Patient Communities Filled a Critical Gap
The genesis of HealthUnlocked reflects a broader shift in the healthcare landscape. Before the early 2010s, patients were largely reliant on physicians for information, supplemented by whatever unfiltered material they could find online. What they lacked was a reliable way to hear directly from others living with the same conditions: people who understood symptoms not just as clinical descriptors but as disruptions to mobility, work, sleep, relationships, and everyday life. Patients were hungry for experience-based insight that could help them interpret their diagnoses and anticipate the reality of treatment.
HealthUnlocked was created to meet that unmet need. Founded by a physician and an entrepreneur, the platform was designed from the outset to give patients a safe place to learn from one another, moderated not by anonymous users but by recognized patient advocacy organizations with deep expertise in their disease areas. This model gave patients access to the lived experience that had previously been missing from the care journey while helping ensure that discussions remained safe, accurate, and grounded in the realities of the condition. Over time, HealthUnlocked has expanded into more than 400 communities representing over 250 conditions, supported by more than 300 partner organizations and frequented by nearly two million members worldwide.
Its growth reflects patients’ desire not only to receive information but to share it. For many, joining the platform occurs at one of the most vulnerable moments in their lives: the days or weeks following a new diagnosis. These individuals want to understand what comes next, not in abstract medical terms but in the practical language of lived experience. That desire for clarity and connection creates a natural entry point into HealthUnlocked, even for people who are not digitally sophisticated or familiar with clinical research. In fact, many of the platform’s members join specifically because they are overwhelmed, uncertain, or isolated, making HealthUnlocked an important source of stability and empowerment.
This dynamic also highlights the importance of moderation and community stewardship. Traditional social media platforms have struggled with harmful misinformation and commercially motivated content that undermines trust. HealthUnlocked, by contrast, is ad-free and anchored in strong patient advocacy partnerships, creating an environment where authenticity and safety coexist. Its emphasis on trust is essential, particularly since members routinely share deeply personal information about their symptoms, struggles, and fears. The result is a digital ecosystem that not only supports patients but fosters the self-efficacy that is increasingly recognized as essential to managing chronic disease.
A study conducted with the University of Manchester demonstrated just how meaningful this can be. By using the patient activation measure (PAM) — an indicator of a person’s confidence in managing their health — the study found that HealthUnlocked users became more informed, engaged, and capable of navigating their conditions after only 12 weeks of participation. This finding underscores a simple truth: when structured, moderated peer support is made accessible, patients become better stewards of their own health.
Why Real-World Evidence Became Essential to Clinical Decision-Making
While HealthUnlocked emerged from the patient side of the equation, the origins of CorEvitas Clinical Registries reflect a longstanding challenge on the clinician and sponsor side. In the late 1990s and early 2000s, the field of rheumatoid arthritis underwent a therapeutic revolution. A wave of biologic and targeted synthetic agents entered the market, dramatically expanding the number of viable treatment options, but no company was required to generate head-to-head comparative data of advanced therapies. As a result, physicians were left without clear guidance on which therapy would work best for which patient.
CorEvitas Clinical Registries were established to fill that evidence gap. By creating large, disease-specific registries that captured longitudinal clinical outcomes, including randomized controlled trial (RCT) measures of disease activity and adverse events, and patient-reported experiences, the organization gave researchers and clinicians the comparative real-world evidence (RWE) they needed to make more confident therapeutic decisions. Over the following two decades, CorEvitas Clinical Registries have expanded into dermatology, gastroenterology, neurology, and numerous autoimmune and inflammatory conditions, among others, becoming one of the most widely recognized sources of registry data in the industry.
The importance of this work cannot be overstated. Despite their rigor, clinical trials are conducted in highly controlled environments that exclude many of the very patients that clinicians are most likely to treat: people with multiple comorbidities, functional limitations, logistical barriers, or socioeconomic challenges. For example, in rheumatoid arthritis, regulators base approval decisions on well-defined endpoints, such as the ACR20, which requires only a 20% improvement in specific clinical measures. However, while a reduction from 20 to 16 swollen joints may meet the technical definition of improvement, that does not necessarily translate into meaningful relief for patients. For many, their sense of progress is shaped by how much their symptoms interfere with everyday activities rather than by incremental changes in clinical scoring.
By bringing together clinician-reported outcomes and patient-centered measures of pain, function, fatigue, mobility, and quality of life, CorEvitas Clinical Registries highlight the important distinction between clinical response and meaningful improvement from the patient’s perspective. The RWE generated across the registries offers a deeper understanding of how therapies perform outside controlled trial settings, including how patients use them, tolerate them, and incorporate them into daily life. Although this information does not directly shape clinical guidelines, payer policies, or regulatory approvals, it provides essential context about disease burden and real-world treatment patterns. In particular, providers can use the evidence generated to inform conversations with patients on how potential treatments are likely to improve their experience (e.g., pain, functioning) based on data from similar patients. As a result, the registries contribute a richer, more patient-aware view of therapeutic performance that complements traditional clinical endpoints and supports more informed decision-making across the health care ecosystem.
Understanding and Integrating the Full Patient Experience
One of the most valuable insights emerging from both HealthUnlocked and CorEvitas Clinical Registries is the enduring difference between physician and patient perspectives. Clinicians are trained to track biomarkers, disease activity scores, imaging results, and organ-specific measures. Patients, however, evaluate their health based on how they feel and function. This distinction is not merely philosophical; it shapes every aspect of care, from shared decision-making to adherence, treatment persistence, and overall outcomes.
Registries help illuminate these differences by synthesizing structured patient-reported outcomes alongside clinical measures. Meanwhile, the spontaneous peer-driven conversations occurring daily on HealthUnlocked reveal the nuances of lived experience that clinicians cannot easily observe. When viewed together, these data sources give sponsors and researchers an unprecedented window into the motivations, fears, practical challenges, and daily realities that shape patients’ health journeys.
This level of insight is increasingly valuable for trial planning. Sponsors who understand the concerns and expectations of potential participants can design protocols that reduce burden, select endpoints that matter to patients, and craft recruitment messaging that resonates. HealthUnlocked plays an important role here as well. Through its patient advocacy partnerships and its disease-specific communities, the platform allows us to identify patient subpopulations, listen to their discussions, and learn what matters most to them before approaching them with research opportunities. Importantly, participation is always voluntary and opt-in, maintaining the trust that is central to the platform’s mission.
Expanding Diversity and Reaching Underrepresented Patients
Reaching diverse and underrepresented patient groups remains one of the most persistent challenges in clinical research. Many chronic diseases disproportionately affect older adults, people of color, and individuals with limited digital literacy or access. HealthUnlocked helps address these disparities by supporting communities that are culturally and contextually aligned with the populations they serve. Some groups are specifically designed for Black or Hispanic individuals managing obesity or other chronic conditions, providing spaces where members feel represented, understood, and safe sharing their experiences. These environments reduce stigma, encourage participation, and make it easier for people who may not engage with traditional online health forums to find support. Because the platform is accessible from anywhere, it also helps overcome geographic barriers, connecting individuals in rural or medically underserved areas who may otherwise have limited access to condition-specific peer communities.
CorEvitas Clinical Registries approach representativeness from a different vantage point. The registries enroll patients through the clinicians who treat them, allowing geographic variability, including rural, suburban, and urban communities, to be intentionally incorporated into the network. This is particularly valuable in the United States, where rural populations often have fewer specialty centers, limited access to clinical trials, and distinct patterns of disease burden and care delivery. By partnering with investigators who serve these communities and qualifying sites according to consistent standard operating procedures (SOPs) and data quality standards, CorEvitas Clinical Registries capture real-world data that reflect the full range of clinical contexts in which patients receive care. The result is an evidence base that examines not only how diseases manifest across demographic groups but also how treatments perform in diverse geographic settings, including those that are often underrepresented in traditional research.
Ensuring Trust and Data Integrity in an Age of Misinformation
As misinformation proliferates across digital platforms, concerns about the credibility of peer-to-peer health information are understandable. HealthUnlocked addresses this challenge through its patient advocacy moderation model. Every community is anchored by a trusted organization that brings its reputation, resources, and disease expertise into the space. These groups review and curate discussions, intervene when content is inaccurate or harmful, and ensure that sensitive conversations occur responsibly. By eliminating banner advertisements and commercial messaging, the platform avoids conflicts of interest and maintains a focus on authentic patient dialogue.
CorEvitas Clinical Registries, by design, address a different but related concern: data quality. RWE is only as valuable as the rigor with which the data behind it are collected. Each registry is built on standardized data elements, structured forms, consistent follow-up intervals, and strict analytical methods. Sites are carefully qualified and onboarded, and their data are monitored to ensure consistency and completeness. This rigor is essential not just for internal analyses but for the regulatory submissions that rely on these data. Many CorEvitas Clinical Registries support long-term safety commitments required by agencies such as the FDA and the European Medicines Agency (EMA), demonstrating the level of trust placed in the platform’s methodology.
Together, these two systems — one focused on lived experience, the other on structured clinical evidence — create a unique and highly credible ecosystem that addresses both the human and technical dimensions of data integrity.
Advancing Real-World Evidence through Multimodal Data Integration
One of the most exciting frontiers in RWE is the integration of multiple data modalities. While protocol-driven registries remain highly structured, patient communities generate vast amounts of unstructured content that can provide additional insight into symptoms, triggers, emotional experiences, and unmet needs. Historically, analyzing millions of such posts was prohibitively time-consuming. Recent advances in artificial intelligence and natural-language processing have changed this, creating new opportunities for large-scale social listening that can identify emerging patient concerns, evaluate sentiment toward therapies, and highlight gaps in existing care pathways.
This ability to rapidly generate insights into patient burden for a specific indication or treatment is now being used to enrich proposals and deepen sponsors’ understanding of the populations they aim to serve. In parallel, there is growing potential to integrate registry data with real-time information from wearables. Sleep patterns, physical activity, nocturnal itch, and other functional metrics could meaningfully enhance clinical understanding of disease burden and treatment response. When combined with clinician- and patient-reported outcomes captured through registries, these digital biomarkers contribute to a more holistic, multidimensional view of patient health that complements molecular precision medicine by capturing the experiential dimensions of living with a disease.
This convergence of structured and unstructured data holds enormous promise for the industry’s evolution toward more personalized and predictive care models while underscoring the importance of trust, data stewardship, and patient engagement.
Global Expansion and the Next Phase of Growth
The integration of HealthUnlocked and CorEvitas Clinical Registries within Thermo Fisher Scientific has accelerated the global reach of both platforms. HealthUnlocked, originally centered in the United Kingdom, now includes a growing U.S. membership and is set to expand into additional international markets. Global expansion requires more than simply translating content. Communities must be culturally aligned, moderated by individuals who understand local healthcare systems, and structured to build trust among users who may feel vulnerable sharing personal information. Thermo Fisher’s global footprint positions the platform to meet these challenges.
CorEvitas Clinical Registries have similarly broadened their geographic scope. While many of the registries began as U.S.-focused programs, new registries increasingly include international sites, creating a more globally representative evidence base. This expansion reflects both the growing demand for regulatory-grade RWE and the unique strengths that Thermo Fisher brings in terms of infrastructure, client relationships, and international reach.
Towards a More Human and More Precise Evidence Ecosystem
The future of clinical research lies in integrating the full spectrum of patient experience with the full rigor of clinical evidence. Biomarkers, imaging studies, and pharmacokinetic models remain essential to precision medicine, but they represent only one dimension of therapeutic response. Equally important are functional outcomes, quality of life, emotional well-being, day-to-day symptom patterns, and the practical barriers patients face in adhering to treatment. These experiential dimensions cannot be captured by molecular assays alone.
Together, HealthUnlocked and CorEvitas Clinical Registries offer a blueprint for how the industry can evolve beyond the limitations of traditional evidence generation. By creating a feedback loop between peer support, clinical insight, and real-world outcomes, we are helping patients become more active participants in their care while giving clinicians and sponsors a more complete picture of how therapies perform outside the controlled environment of clinical trials. This integrated perspective is essential for improving trial design, refining therapeutic positioning, enhancing safety monitoring, and ultimately matching the right therapies to the right patients at the right time.
The work of these platforms also speaks to a broader philosophical shift. Precision medicine has long been understood through the lens of genomics, but the quest is fundamentally the same whether the data come from molecular assays or patient-reported outcomes. The goal is to tailor therapies to the needs of individuals, not just populations. When clinician-reported outcomes, patient narratives and reported outcomes, wearable-derived digital biomarkers, and molecular signatures are brought together, the result is a far more powerful and targeted form of medicine.
Conclusion
Digital transformation in health care is not just about deploying new technologies; it is about creating systems that honor the full complexity of the patient experience. HealthUnlocked and CorEvitas Clinical Registries represent complementary pillars of this transformation. One amplifies the voice of the patient, offering connection, empowerment, and shared understanding. The other provides the rigor, structure, and longitudinal data needed to understand treatment performance in real-world clinical practice. Together, they expand what has traditionally been a largely one-dimensional clinical evaluation into a multi-dimensional view of disease that supports deeper assessment of patient subgroups and helps guide efforts to reduce the full impact of disease on patients. This more holistic perspective enables more inclusive research, more informed decision-making, and, ultimately, more meaningful outcomes for people living with complex conditions.
