Building Patient Trust In Research Through Connection Driven-Transparency

By Michele Donovan, director of growth and strategic partnerships, Community Liver Alliance

As long as the need for clinical trials has existed, so, too, has distrust in the research ecosystem and the professionals who promote participation. Trust remains one of the most decisive factors influencing whether patients choose to enroll in — and remain enrolled in — clinical trials.¹ For many communities that have been historically excluded or underserved, trust has been shaped by generations of inequitable care, limited access to information, and persistent underrepresentation in medical research.^2,3

Participation in liver-related clinical trials remains low, particularly among communities of color, rural populations, and individuals facing socioeconomic barriers.^4,5 In liver disease — where early intervention and access to emerging therapies can be life-changing — closing this trust gap is a strategic priority and a moral and ethical imperative.^6,7

Research consistently demonstrates that trust directly impacts clinical trial enrollment, retention, participant diversity, and overall study outcomes.^1,8 The critical question, then, is not whether trust matters but how industry, sponsors, and investigators can effectively bridge the trust gap and dismantle longstanding barriers to participation.

Bridging The Trust Gap

Connection-driven transparency bridges the divide between patient uncertainty and patient empowerment. When individuals understand what a trial involves — its purpose, its potential benefits and risks, its time commitment, compensation structure, and what participation will realistically look and feel like — they are far more likely to view enrollment as a partnership rather than a gamble. Patients need to see themselves as part of the community, the decision, and the story of the clinical trial.

This is especially important for people living with liver diseases such as metabolic dysfunction-associated steatotic liver disease, metabolic dysfunction-associated steatohepatitis, primary biliary cholangitis, primary sclerosing cholangitis, and hepatocellular carcinoma, who often face long diagnostic journeys, fragmented care, and stigmatizing misconceptions about liver disease. Transparent communication helps counter misinformation, addresses fear, and demonstrates respect for the patient’s experience and autonomy.

Transparency In Practice

Transparency is not a single action. It is a system of behaviors woven throughout the full trial life cycle. At a minimum, sponsors, CROs, and investigators should adopt clear and culturally responsive practices that address:

• Purpose of the trial: Explain why this research matters and what questions it aims to answer.
• Risks and benefits: Communicate in plain language and appropriate cultural context.
• Eligibility and logistics: What is required from the patient, how often, and where?
• Compensation and reimbursement: Fully explain up front to reduce financial anxiety.
• Data privacy and use: How patient information will be protected and how results contribute to broader understanding of liver disease.
• Post-trial access: What happens after the study ends and what support continues.

When patients can anticipate their experience, they can make informed decisions without fear or hesitation. All of the detailed factual information about the study should be clear, concise, and communicated up front. But transparency alone isn’t enough to close the gap. In order for patients to feel empowered, the clinical trial needs to become a part of their story.

Connection-Driven Transparency In Practice

Connection-driven transparency goes beyond sharing information — it creates a relational experience where patients feel seen, heard, and valued. There is a need to create the opportunity for patients to not only understand the study but also see themselves as a part of it and the trial as part of their disease journey. This connection becomes the foundation for ethical engagement, improved retention, and meaningful participation.

To build connection-driven transparency, sponsors, CROs, and investigators should intentionally adopt a patient-centered communication approach.

Humanize the interaction from the onset: Create and introduce the study team as real people and the study as being for real people. Share why the team cares about liver disease, and include patients in how the trial is designed. Connection grows when patients feel they are engaging with people, not systems.

At a recent Community Liver Alliance (CLA) National Liver Forum, we hosted a Clinical Trials Panel with representation from study partners , including patients, industry innovators, research institutions, and provider study leaders.  The moderator opened with personal panel introductions and led an inclusive conversation between the experts and the audience. Patients in the room immediately commented that it “felt different”—as if people, not protocols, were welcoming them into the conversation. 

Create recruitment that tells a story: Use imagery and messaging that reflects the patient voice. Tell real stories and use real people to share information.

The CLA partners with sponsors to promote clinical trials across the broader liver community. Our outreach strategy prioritizes inclusivity and aims to increase awareness and participation among underrepresented communities.

When social media and website content reflects the lived experiences of patients and caregivers, engagement is consistently stronger. We encourage storytelling grounded in real journeys, helping others see themselves represented—and supported—at the clinical trial stage of care.

Build trusted outreach strategies. Meet patients where they already seek reliable information. By aligning outreach efforts with the community spaces, sources, and platforms patients already trust, you build on an existing foundation of credibility — creating a natural bridge between patients and the information you want to share.

Engage patients in places they already turn to for disease-related information, such as online forums, advocacy organizations, community events, and social media groups.

The CLA helps share important clinical trial information with the patients we engage, supporting their understanding of clinical research and introducing them to trials they may be eligible for. Hearing this information from a trusted source strengthens connection, confidence, and engagement.

Listen to patient concerns with empathy: Create feedback loops for patients to voice fears, hesitations, and lived experiences. Acknowledge their realities — whether related to stigma, transportation, caregiving responsibilities, or healthcare trauma — and respond with compassion, not defensiveness. Be prepared to offer solutions.

During a CLA-hosted listening session in collaboration with the Community Education Group, we posed questions to individuals living with a variety of liver illnesses.  Our goal was to identify barriers to participation in clinical trials affecting underrepresented populations.  Our questions were framed to encourage open, honest feedback while being sensitive to the participants’ experiences.

Co-create communication: Use language shaped by people with lived experience. Check for understanding, invite questions, and adapt explanations to individuals’ cultural backgrounds, literacy needs, and communication preferences.

PWLE advisors helped redesign trial materials, replacing complex jargon with visuals and everyday language. Patients said the simplified materials “finally made sense.” 

We offer educational resources in multiple languages to ensure accessibility for non-English speaking populations. 

Offer partnership, not persuasion: Invite patients to take an active role in their participation. This may include help with scheduling, reviewing materials, or suggesting accommodations. When patients feel like partners rather than subjects, their confidence in the process grows.

Close the loop with gratitude and updates: Share study milestones, outcomes when possible, and expressions of appreciation. Even small updates show patients that their contributions mattered and that their partnership had purpose beyond data collection.

When patients experience transparency through connection — not just information — they gain a clearer sense of safety, partnership, and respect. This strengthens trust, improves engagement, and helps ensure that research is both scientifically rigorous and patient-centered.

How The Community Liver Alliance Supports Connection-Driven Transparency

Through its cross-sector convenings, clinical advisory networks, patient forums, and national advocacy partnerships, the CLA has developed a practical and replicable model for trust-centered engagement between the research ecosystem and the liver patient community.

CLA’s work demonstrates that transparency thrives when relationships — not just recruitment targets — are prioritized. We foster open dialogue about patient expectations, fears, motivations, and lived realities by bringing together:

• people with lived experience (PWLE)
• academic and community clinicians
• industry sponsors and CROs
• advocates and caregivers.

We work as a trusted resource for and about patients. These insights guide sponsors and investigators in designing protocols, outreach, and communications that are more human-centered and less transactional.

This approach doesn’t just improve trial participation, it strengthens shared ownership of research progress, which ultimately accelerates innovation in liver care.

A Call To Action

The future of liver disease research depends on the meaningful inclusion of communities that have too often been left out of clinical conversations. To achieve this, trust must be treated as a measurable, intentional component of trial design — not an afterthought.

By adopting transparent, patient-centered practices and engaging early and often with organizations like the CLA, sponsors, CROs, and investigators can build research environments where every participant feels respected, informed, and valued.

Connection-driven transparency is not just about sharing information; it’s about telling a shared story. And when done well, it transforms clinical trials into collaborations that uplift patients, strengthen science, and advance health equity across the liver community.

References:

1. Shea, J. A., Micco, E., Dean, L. T., McMurphy, S., & Schwartz, J. S. (2008). Does trust in physicians affect health outcomes? Medical Care, 46(4), 357–366. https://doi.org/10.1097/MLR.0b013e318160ca36
2. Scharff, D. P., Mathews, K. J., Jackson, P., Hoffsuemmer, J., Martin, E., & Edwards, D. (2010). More than Tuskegee: Understanding mistrust about research participation. Journal of Health Care for the Poor and Underserved, 21(3), 879–897. https://doi.org/10.1353/hpu.0.0323
3. George, S., Duran, N., & Norris, K. (2014). A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. American Journal of Public Health, 104(2), e16–e31. https://doi.org/10.2105/AJPH.2013.301706
4. Murthy, V. H., Krumholz, H. M., & Gross, C. P. (2004). Participation in cancer clinical trials: Race-, sex-, and age-based disparities. JAMA, 291(22), 2720–2726. https://doi.org/10.1001/jama.291.22.2720
5. Loree, J. M., Anand, S., Dasari, A., Unger, J. M., Gothwal, A., Ellis, L. M., Varadhachary, G., Kopetz, S., & Lopez-Olivo, M. A. (2019). Disparities in clinical trial accrual of racial and ethnic minorities in oncology trials. Journal of the National Cancer Institute, 111(4), 355–362. https://doi.org/10.1093/jnci/djy076
6. Emanuel, E. J., Wendler, D., & Grady, C. (2000). What makes clinical research ethical? JAMA, 283(20), 2701–2711. https://doi.org/10.1001/jama.283.20.2701
7. National Academies of Sciences, Engineering, and Medicine. (2020). Improving representation in clinical trials and research: Building research equity for women and underrepresented groups. The National Academies Press. https://doi.org/10.17226/26479
8. Ford, J. G., Howerton, M. W., Lai, G. Y., Gary, T. L., Bolen, S., Gibbons, M. C., Tilburt, J., Baffi, C., Tanpitukpongse, T. P., & Wilson, R. F. (2008). Barriers to recruiting underrepresented populations to clinical trials: A systematic review. The Oncologist, 13(12), 121–130. https://doi.org/10.1634/theoncologist.2007-0278

About the Author:

Michele Donovan is the director of growth and strategic partnerships at the Community Liver Alliance (CLA), a national nonprofit organization dedicated to improving the lives of individuals and families affected by liver disease through education, advocacy, and trust-centered engagement. There, she works as part of a multidisciplinary team dedicated to advancing patient-centered liver care and research. In collaboration with patients, clinicians, advocates, and industry partners, she helps build trusted relationships that support equitable access to education, clinical research, and emerging therapies. Her work focuses on strengthening community engagement, amplifying lived experience, and fostering transparent, inclusive approaches across the liver disease continuum.