Journey to Better Health Mobile Exhibit 2023

Journey to Better Health is a mobile exhibit that showcases clinical research information to local communities in a fun, interactive way. In Fall 2023, the exhibit traveled to Philadelphia, PA and Baltimore, MD advocating for the importance of participation in clinical research and the critical need for more diverse representation.

Meeting UK IRB/EC Expectations for Patient review of Research Participant Information

From December 1st 2023, applications to conduct clinical research in the United Kingdom must meet the Health Research Authority’s (HRA) Quality Standards and Design and Review Principles to receive a favorable opinion. Research Ethics Committees (RECs) will check whether the standards have been achieved, including implementation of a sufficient patient review process to ensure that participant information is relevant and understandable for the intended audience.

This webinar reviews key elements of these expectations and provides logistical and practical considerations for meeting them. Speakers include experts in patient engagement and involvement of patient communities in the development of clinical trial related documentation and participant communications, as well as perspectives from stakeholders who have experience in the roles that must fulfil the new requirement.

Featured Speakers

Behtash Bahador

Behtash Bahador

Director, Health Literacy, CISCR

Thomas Rhode Jørgensen

Chief Operating Officer (COO), James Lind Care


Results from CISCRP’s 2023 Perception & Insights Study

CISCRP’s Perceptions & Insights Study routinely assesses global trends in attitudes, perceptions, and experiences associated with clinical research among patients and the public. The results from our latest 2023 study are in, with over 12,000 responses from around the world! We discuss the latest findings from this study during the webinar.

Featured Speakers

Annick de Bruin

Chief Research and Insights Officer, Research Services, CISCRP

Rebecca Nordland

Senior Project Manager, Research Services, CISCRP

headshot_Emily Clifford

Emily Clifford

Senior Project Manager, Research Services, CISCRP

Jackie Zimmermann MS Advocate

Jackie Zimmerman

MS & IBD Patient Leader


Twyla Bode RN BSN MN

Clinical Research Nurse Coordinator

Highlights From the 2023 Study Include:

  • Public understanding of clinical research and perceptions of safety increased post-pandemic
  • Top mentions for increasing trust in pharma companies conducting trials:
    • By the company sharing information about the health risks and benefits of their medicines
    • Knowing that the company actively works with patients, caregivers, and patient communities to make clinical research studies easier to participate in
    • By the company sharing information in patient-friendly language that they can easily understand
  • About half were ‘very willing’ to go to a pharmacy for study visits, however those who were not willing were most concerned:
    • About the facilities (i.e., too public, lack of a private room/area)
    • That their privacy/confidentiality would not be protected, and
    • About the quality of care they would receive

Fall 2023

October 2023

Patient Diversity Campaign

Our Patient Diversity Campaign aims to highlight the importance of diversity in clinical studies by building trust and awareness across all populations. We publish a full-page educational advertisement and article in 5 different newspaper publications, print and digital, reaching over 3 million diverse individuals across Black, African American, Hispanic, and Latino communities.


Read Merck’s article about how underrepresented communities is recognized as a systemic problem, how important community collaboration has been to improve patient diversity, and efforts on building trust.

Thank You to the Supporting Organizations

Learn More About Clinical Research


Why Diversity in Clinical Research Matters

Community Trust: The Foundation for Fostering Diversity in Clinical Trials

Featured Article in our October 2023 Patient Diversity Campaign

As an industry, we must recognize and address a complex problem: racial and ethnic minority populations have historically been underrepresented in clinical trials. Over time, it has become widely recognized that this issue is a systemic problem, not a participant one.

What does that mean? It means there have been limitations in clinical research that aren’t isolated, but deeply embedded in our processes and systems. These limitations can include anything from protocol complexity to a lack of diversity in the clinical research field, which can create barriers to ensuring participation. This can have long-term implications for equitable access to medicines.

We’re making progress. In the past few years, Merck has increased participant diversity in our trials. Much of our progress is thanks to our community collaborators, whose engagement is vital in helping us understand and solve the complex issues at play.

Written by: LaShanda Gordon

Defining community collaborations

For me, community is synonymous with home. I grew up in Selma, Alabama. Many consider it the seat of the Civil Rights movement, but it is also the small southern town that taught me the power and importance of community.

At Merck, I’m a Diversity Program Lead for Clinical Trials, and part of my job is working directly with community-based organizations and leaders to provide valuable resources about clinical research. I also help our company and communities make connections to try to improve trial access. An important step for increasing clinical trial participant diversity is helping to ensure everyone can make informed decisions about their health, no matter who they are or where they live. That starts with education.

Over my years in the industry, I’ve learned something valuable from every person, project, and community. Some of my takeaways include:

  • Learning never ends. Every engagement helps improve our understanding of how an organization operates, the unique needs of a particular community, or what approach would be most impactful. We need to listen.
  • Start with the community-based organizations. They are the most knowledgeable about what their community needs. In addition, they are connectors and can be a bridge to valuable resources, insights, and additional partners.
  • Each community is unique, with its own set of challenges and strengths. For example, the needs of an African American community in the Bronx are different from one in rural Alabama – we cannot retrofit strategies from one to the next. It is important to listen and learn about the particular needs of the community.

Building trust

Being a good collaborator starts with trust. Without that, we can’t build a path forward. It’s the foundation to everything else, but it can be the hardest part to get right.

I’ve found the best way to earn trust is by listening. We want to ensure our partners feel heard – especially because we use insights from them to build our approach. It’s also important to ensure we’re not guided by preconceived ideas about what they need. If you ask what needs to be done, the community will tell you.

At Merck, we recently established a U.S. Community Advisory Panel, with patients, caregivers, health care providers, and community members from diverse backgrounds who – along with our existing Patient Advisory Panel – share insights that help us incorporate the patient perspective in our site and patient engagement methods. We listen to them, and we learn a lot.

The best part is that we are seeking their guidance early, when it can have the greatest impact. For example, they are helping us design our protocols to be patient-friendly by reviewing the number of in-person site visits and inclusion/exclusion criteria for trials. That way, we’re able to address potential barriers as early as possible in the process.

Putting people back into collaborations

Too often, we forget that collaborations are about relationships, and those are built between people who trust each other. People are also the focus of our trials.

When we make our efforts more about people, we must also think bigger than trials and focus on wraparound care like disease education and screenings. There are still many who are not aware that they may be eligible for a clinical trial. It’s important that we prioritize education and awareness, long before there is a study to enroll in.
We can only earn trust as a collaborator in the continuum of a community’s health care. Our support can’t be exclusive to one-off projects. We must be present and active in what we help build.
Most importantly, we must remember the thread that runs through it all, the real definition of the word community: people.

Authored by: LaShanda Gordon

Insights on Developing an Impactful DEI Video

Hear from our panelists who share insights gained while developing CISCRP’s video, The Importance of Diversity in Clinical Trials. The discussion will focus on how to embed key DEI principles and concepts, not only in the product but also in the process, ensuring a balance is struck between nonpromotional education and advocating for participation, logistical tips for planning and executing a successful live-action video project.

Featured Speakers

Lucas Goren

Senior Project Manager, CISCRP

Behtash Bahador

Director, Health Literacy, CISCRP

Tammy Wilkins

Tammy Wilkins

Senior Manager, Applied Innovation and Process Improvement, Otsuka


Matt Low

Chief Creative Officer, Praxis Communications

Mel Hardman

Dr. Melissa Hardman, MPH, MS

Faces of Research


Ashley Nealy

COVID-19 Clinical Trial Participant


Melvin Mann

Video Participant

CISCRP’s Finding Treatments Together Brochure for LGBTQ+ Communities

Our Approach to Codeveloping an Educational Resource for the LGBTQ+ Community

When creating a brochure for diverse populations of people it’s important to consider an expansive definition of diversity that includes, but is not limited to, ethnic and racial identity. In this case, our intended audience included Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, and Asexual people (LGBTQ+), in addition to all other sexual orientations, gender identities, and gender expressions. Given that sexual identity intersects with every other form of identity, we had to take particular care to ensure that the diverse perspectives of this community were represented in the brochure. In practice, that meant acknowledging and giving space for people to speak about the many identities they inhabit and how those other identities inform their LGBTQ+ experiences.

Our discussions with subject matter experts and members of the public from the LGBTQ+ community also showed us that it was most important to give members of this community the tools they needed to navigate clinical trials in a such way that gave them agency and outlined the initial steps for making change by participating in advocacy groups and as members of the public on ethics committees.

Once we incorporated feedback from the aforementioned SMEs and community members, we tested the brochure with a survey sent to 500 members of the LGBTQ+ community to ensure that the brochure was culturally competent, neutral, and informative. This process helped make sure the topics, language, images, and design are appropriate and engaging. We also received feedback on how effective our brochure was for raising awareness about the importance of LGBTQ+ participation in clinical research.

Key Insights We Learned About Including LGBTQ+ People in Clinical Research

Respondents emphasized that the onus for navigating clinical trials as a member of the LGBTQ+ should be shared: researchers must acknowledge that the determinants of health and the ability to participate in clinical research are multidimensional. For example, one’s lived experience, geographic location, ability to access health services and procedures are also important variables when considering how to make treatments safe and effective for everyone.

To that end, this brochure was created to raise awareness about clinical trials and to identify the barriers to inclusion, and the potential concerns members of the LGBTQ+ community may have with participation in clinical trials. To do this well, we had to consider how history, culture, and even current events may structure a group’s perception of clinical trials. Our initial research with SMEs and community advocates brought up historical wrongs, such as the US federal government’s hostility towards HIV/AIDS research, that have left enduring legacies of mistrust and suspicion towards clinical trials. However, the source of this mistrust isn’t confined to the past: many of our conversations with SMEs centered on current legislation at the state level that targets trans and non-binary people by denying them necessary medical care has likely had a chilling effect on their seeking medical care or clinical trials.

When we spoke about these issues to members of the LGBTQ+ community we received critical feedback that raising awareness was important but insufficient. In order to develop the most helpful version of this brochure, we were asked to highlight the ways in which the lack of action from researchers to be more inclusive negatively impacted access to care, willingness to participate, and the overall experience of participation for those who did partake. They advocated for switching the narrative from one that asked LGBTQ+ people to navigate the pitfalls of clinical trials, to one that also put the onus on researchers to accommodate their needs. Reviewers emphasized that this approach moved the onus of accommodation from participants to researchers.

Next Steps Towards LGBTQ+ Inclusion in Clinical Research

However, there is so much more work to be done. Collaborating with LGBTQ+ communities to raise awareness about representation and inclusion of LGBTQ+ people in clinical research must be an ongoing efforts in all spheres of the clinical research industry, as conditions are continuously changing. In practice, these efforts would include  outreach, awareness, and empowerment of the communities with education and resources to help them participate in their own advocacy.  In addition to empowering participants, researchers must initiate their own educations to ensure they are adopting more inclusive practices.


It gives me great pleasure to share my testimony on working with the Center for Information & Study on Clinical Research Participation (CISCRP) for a number of years; most recently on their LGBTQ+ brochure project, the development of which I had the incredible privilege of being a small part of. From its very inception, it was clear that this was not just ‘another brochure,’ but a meaningful step towards addressing the long-standing gaps in clinical trial participation and research among the LGBTQ+ community. The journey towards crafting CISCRP’s comprehensive and inclusive resource once again demonstrates not only their ongoing, deep commitment to highlighting the urgent need for further work to ensure genuine inclusion but also to further explore the unique challenges faced by some of the most under-resourced populations in the realm of clinical trials.

The development process, as is always the hallmark of the CISCRP team, was again marked by unwavering dedication, collaborative effort, and an unyielding commitment to authenticity. We had the pleasure and privilege of engaging with community members, medical professionals, and LGBTQ+ advocacy organizations to ensure that every aspect of the brochure resonated with the lived experiences of those for whom it was designed to serve.

This brochure is a tool – a catalyst for change – that has the potential to spark meaningful conversations, challenge preconceptions, and drive research policy reforms. I heartily commend the CISCRP team for recognizing the importance of inclusivity and continuing their critical work to dismantle stigmas, advocate for change, and ensure representation among all individuals at the table – and to empower communities to actively shape the future of clinical research. My journey in helping to develop the LGBTQ+ brochure for CISCRP has been an experience of profound learning, empathy, and hope, and one that reinforces the fact that progress is made through collaboration, compassion, and a relentless pursuit of equality.

This is an endeavor to celebrate, though we must remember that the path ahead is still quite long. I have every confidence that the CISCRP team’s dedication in ensuring every voice is heard, every story is valued, and every individual is embraced within the scientific arena will be resolute. I commend them on, and deeply appreciate, their quest for engaged representation and inclusivity in clinical trials for all. It is a true honor to work with this team and contribute to their meaningful efforts as THE leader in patient engagement, clinical research education, and clinical trial research and participation.

Heather C. Guidone, BCPA, Surgical Program Director  
The Center for Endometriosis Care

Clinical Research for American Indian and Alaskan Native Communities

CISCRP is committed to providing clear, unbiased, and culturally appropriate educational materials to engage and inform communities that have not been well represented in clinical trials.

Purchase Single/Quantity Brochures at our Store

We developed this brochure together with members of American Indian and Alaskan Native communities, as well as subject matter experts who have experience working with these communities. This included receiving feedback from 500 members of the American Indian and Alaskan Native community through an anonymous survey.

They all helped make sure the topics, language, images, and design are appropriate and engaging. We also received feedback on how effective our brochure was for raising awareness about the importance of American Indian and Alaskan Native participation in clinical research.

This process allowed us to confirm that we are addressing the key concerns and barriers that prevent better diversity, equity, and inclusion in clinical research. This brochure was also reviewed by an Institutional Review Board (IRB), which is also known as an independent ethics committee. The IRB review ensures the brochure follows ethical guidelines for providing information about clinical research to patients and the public.

Topics include:

  • Why are Clinical Trials Important?
  • The Need for Diverse Participants in Clinical Trials
  • Why Have American Indian and Alaskan Natives Not Been Represented in Clinical Trials?
  • How American Indian and Alaskan Native Participants are Protected
  • Things to Consider Before Volunteering
  • Different Ways to Get Involved