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

Why Diversity in Clinical Trials Matters – May 2023 Patient Diversity Campaign

Article from our 2023 May Patient Diversity Campaign

Clinical trials are a critical part of the research process for new medicines and vaccines. The information gained is fundamental to the development of new ways to help treat and prevent disease. Evidence has shown that some drugs and vaccines show variations in the response to some individuals depending on their racial or genetic background. For this reason, it is important that volunteer participants of clinical trials appropriately reflect the people that the investigational medicine or vaccine is intending to treat.

Our company, Merck, and many others, are working to ensure that volunteer participants from diverse backgrounds are included in clinical trials. Why is this so important? Age, gender, weight, race, or ethnicity might change how individuals respond to a treatment. By including people with varied traits and characteristics, research can provide important information to understand how treatments work in a diverse population.

There are many reasons why people volunteer for clinical trials – and many reasons they choose not to. In the United States, past medical mistreatment made some people distrust science and medicine. Financial or travel issues can also make it hard for people to join research trials. Too often, all those worries combined prevent people from volunteering.

That’s why we’re trying to make it easier for all volunteer participants.

The importance of diversity in cancer research

Diversity in clinical research is especially important in cancer research because the impact of cancer can be very different among diverse groups of people. For example, the American Cancer Society says prostate cancer is increasing. It also is 70% more common among Black men than White men in the United States. It’s important then that Black men are also a big part of research into the disease and the evaluation of investigational treatments.

Improving diversity in trials by reaching people in underrepresented communities

We need to do a better job engaging people in underrepresented communities and help them understand what participation in a clinical trial involves. Then we need to help those with challenges, like being too far from a trial or having financial concerns.

Partnerships with local organizations – groups who know their people best — can help. We’re also running our trials in more areas. Last year, about half of our clinical trial locations were placed in areas where underrepresented groups live to meet them where they are.

We recognize that there are things we can do to improve the clinical trial experience for volunteer participants, such as providing travel to and from clinical sites for their study appointments.

We know people often feel more comfortable with doctors and medical professionals who look like them too. So, we’re working to improve the diversity of clinical researchers. Plus, we’re creating tools to help health care professionals engage their patients about participating in trials.

We’re training more people to help volunteer participants through the clinical trial process called Patient Navigators. Patient Navigators can work with patients and medical staff as a go-between. We’re also looking at how to run trials so that some aspects may be easier for volunteer participants, like using telemedicine.

Working together to improve clinical research

We have a lot more to do, but we’re seeing progress. In 2022, we enrolled about 50 percent more diverse volunteer participants in our trials. It’s positive momentum we are working hard to grow, to make sure clinical research is an option for everyone.

You can help. Be open to learning more about clinical trials. Every trial has risks and benefits, and participation is completely optional and voluntary. You can stop at any time. Volunteer participants get to be active in their health and help advance medical research for everyone.

Authored by: Adrelia Allen, Senior Director, Clinical Trial Patient Diversity, Merck Research

Learn about Diversity in Clinical Research

Learn why diversity matters, how the clinical research process works, and gain information for specific communities.

Press Release: CISCRP Receives Innovation Award from FDA’s Office of Minority Health and Health Equity for Research Project on Pilot Mobile Community Engagement Initiative

Initiative Aims to Bring Clinical Research Education and Resources to Medically Underserved Communities

BOSTON, MA — The Center for Information and Study on Clinical Research Participation (CISCRP), a nonprofit organization dedicated to educating and informing the public about the clinical research process, has received a new award from the Food and Drug Administration’s Office of Minority Health and Health Equity (FDA OMHHE).  The OMHHE innovation award will fund a grassroots pilot research project titled “Evaluating Impact of Mobile Community Education Engagement Initiative on Perceptions and Behaviors Related to Clinical Research Among Underserved Populations,”  designed to offer and integrate educational programming and resources about clinical research into the heart of select underserved communities nationwide.

“We are excited to collaborate with CISCRP on this important pilot research project that meets communities where they are, so that everyone has an opportunity to learn and become more informed about clinical research,” said RDML Richardae Araojo, FDA Associate Commissioner for Minority Health and OMHHE Director.

Empirical research in peer-reviewed literature indicates that there has been underrepresentation of racial and ethnic minority populations in clinical trials conducted during the past two decades. Research also shows that low levels of awareness, lack of trust, and poor access to clinical trials are among the top causes of these disparities.

The research project hopes to identify practices that address these issues of underrepresentation through a coordinated, grassroots mobile community education and engagement campaign. CISCRP – in partnership with patient communities and health literacy experts – will develop an educational exhibit within a mobile RV, train local community liaisons and educators, and visit health and cultural activities in select urban centers in the U.S. Throughout the initiative, CISCRP will assess and report on the program’s impact and lessons learned.

“Our mission is to educate and engage with the public and patient communities where they live and learn, and to do so in collaboration with key individuals who reflect the communities,” said Ken Getz, CISCRP Founder and Board Chair. “We are very excited about this pilot project and, at its conclusion, hope to expand its scope nationwide.”

CISCRP has 20 years of experience developing and bringing award-winning grassroots clinical research education through the Journey to Better Health | AWARE for All program, and provides accessible, high-quality education and advocacy to the public and to patient communities.


The Center for Information and Study on Clinical Research Participation (CISCRP) is a 501(c)(3) nonprofit organization dedicated to educating and engaging the public and patients as partners in the clinical research process. CISCRP provides free education, resources, and advocacy services to patients and the public. Visit for more information. For additional questions about the mobile community engagement initiative, please contact Joan Chambers,, or Lindsey Elliott,

To search for medical conditions in a specific location, visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

Volunteer opportunities with CISCRP, visit our Volunteer page

Improving Health Outcomes through Equity and Access

Article from our 2022 October Patient Diversity Campaign

Better access to healthcare equals better health outcomes. Biogen strives to increase access and address the barriers that patient populations face. Oftentimes, health outcomes depend on factors beyond the control of patients and their doctors. Disparities across age, gender, race, ethnicity and socioeconomic level are some examples. One of the key parts to Biogen’s approach involves researching and understanding these issues as well as their compounding factors, such as, inadequate representation in clinical trials and limitations to accessing care. Overall, the goal is clear: improve health outcomes for Black, African American, Hispanic, Latino and other underserved communities in Biogen’s main disease areas.

Research and Collaboration

Issues of culture awareness and mistrust remain prevalent alongside a host of other considerations prior to enrollment in a clinical trial. To address these issues, Biogen uses a multi-channeled health equity strategy which includes incorporating diverse community perspectives and insights into our drug development and engaging with the community by partnering with organizations to educate, build awareness, establish trust, and drive health equity.

In partnership with the Center for Information and Study on Clinical Research Participation (CISCRP), Biogen formed a Community Advisory Board (CAB) of patient advocates from underserved and underrepresented communities who co-develop honest and transparent educational assets for patients, HCPs and clinical trial sites to discuss the importance of diversity in clinical trials. The CAB has also advised on various program and study designs as well as the development of Biogen Trial Link, a publicly facing website to learn more about and find clinical trials.

In collaboration with the National Minority Quality Forum (NMQF), Biogen launched the Clinical Trial Index and Clinical Trial Learning Community (CTLC) which uses U.S. heat maps of Medicare/Medicaid beneficiary data by patient demographics and maps them against clinical trial site locations. This information seeks to identify the right sites in the right locations to meet patient needs. The CTLC launched as a virtual space for local stakeholders and subject matter experts to integrate routines in local care networks to increase underrepresented and underserved population participation in clinical trials.

Clinical Recruitment and Specific Disease Areas

As the clinical study recruitment begins, Biogen teams track and report their progress toward the study targets that represent the epidemiology of their respective disease. Given this commitment, 2021 had 100% of Phase 1–4 studies in the U.S. including a plan to recruit participants from underrepresented communities to ensure the study population is representative of the intended treatment population. They also launched an Internal Participant Demographic Distribution Dashboard to track and measure the demographic distribution of participants across programs and studies, and to compare directly to epidemiology targets. Within certain disease areas, Biogen has built community and faith-based outreach and education programs for disease awareness and general clinical trial education with trusted organizations such as HEAL Collaborative and Proximity Health Solutions.

In Alzheimer’s specifically, they have sponsored the Bright Focus Foundation’s Virtual Community Outreach Series, bringing sustained Alzheimer’s disease and clinical trial education and access to communities with an underrepresented focus. Additionally, Biogen co-developed a paper with the NMQF titled “A Roadmap for Real-World Evidence Generation in Alzheimer’s Disease.” It highlights how real-world evidence can include larger patient populations that are historically underrepresented in randomized controlled trials.

In Lupus, Biogen collaborated with Saira Z. Sheikh, M.D., Director of University of North Carolina (UNC) Rheumatology Lupus Clinic and Director of the Clinical Trials Program at UNC’s Thurston Arthritis Research Center, to gather insights on barriers to clinical trial enrollment among underrepresented groups. These insights are being used to inform Biogen’s clinical development programs in lupus and address equity in study participation. For the Phase 3 studies in systemic lupus erythematosus (SLE), Biogen set enrollment targets that reflect the prevalence of SLE in Black or African American and Hispanic and/or Latino communities to achieve appropriate representation. Through partnerships with community-based Proximity Health Solutions and faith-based HEAL Collaborative, along with expert panels of community leaders, HCPs and patient advocates, they participated in seven events across the U.S. in 2021 to educate communities about lupus and clinical trial research.

A Holistic Approach to Inclusion and Equity

Beyond this commitment to the patients and their specific needs, Biogen also focuses on the workers involved in clinical trials. In 2021, they joined the Association of Clinical Research Professionals (ACRP) as part of ACRP Partners in Workforce Advancement™, which works to expand the diversity of the clinical research workforce and to set and support standards for workforce competence.

Additionally, Biogen has fostered employee collaboration to increase awareness of health equity needs cross-functionally. In 2021, they introduced a Health Equity Ideas Cafe Series to deepen organization-wide understanding of Biogen’s commitment, including representation in our clinical trials and equitable access. The three-part series engaged internal and external guest speakers on themes of lupus awareness, patient voices and community partnerships, and equitable access to healthcare. In addition, Biogen hosted an event with John Sawyer, Ph.D., ABPP-CN and a board-certified clinical neuropsychologist of the Ochsner Neuroscience Institute; and Donnie Batie, M.D., on successful approaches to caring for underrepresented patients.

From their research into healthcare disparities and patients’ needs, Biogen’s approach to health equity is guided by the motivation to help those who have historically been underserved. Concretely, this commitment to health equity looks like: clinical trial diversity, empowering underrepresented groups, engaging employees, and launching new tools to improve accessibility.

Visit Biogen Trial Link to learn more about clinical trials and how you can support equity and access efforts such as these.

To search for medical conditions in a specific location, visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

Volunteer opportunities with CISCRP, visit our Volunteer page

Learn more about our Patient Diversity Campaign Here

Wondering How to Take Charge of Your Health? Clinical Research Can Play a Key Role

For most of us, medication is a staple in our daily lives. Whether you’re taking Ibuprofen for a headache, Zyrtec for allergies, or picking up a prescription at the pharmacy to treat a more chronic condition, you are ultimately benefiting from the clinical research that made these treatments possible.

Clinical research plays an important role in the development of new treatments and the advancement of medicine, yet its role is not widely understood. That’s why CISCRP, a nonprofit organization dedicated to informing and sharing resources with the public, created our free health and wellness program, Journey to Better Health | AWARE for All.

Traveling to communities across the country, the Journey to Better Health Program’s next stop is in San Diego, where CISCRP will be hosting a free community health event on Oct. 6. This event will be held from 5-8 p.m. at the Scottish Rite Event Center.

Here’s why San Diegans should attend this upcoming health event:

  • Meet with 20+ local exhibiting organizations.

If you’re looking for specific resources for yourself or a loved one relating to a medical condition, our exhibit hall presents the perfect opportunity to make local connections and access free resources. Our exhibitors include a variety of organizations, including Alzheimer’s Association, The Scleroderma Foundation of California, American Liver Foundation, VA San Diego Medical Center, Pacific Research Network, and many more.

  • Receive free health screenings – no health insurance needed.

In addition to the resources offered by our exhibiting organizations, this event offers opportunities to receive free health screenings. Stop by the Sharp Research Institute’s table to learn more about their services and take a memory screening, or receive blood pressure and glucose screenings from Velocity Clinical Research. Rapid Hb1AC tests will also be available.

  • Hear what to expect when joining a clinical trial and how they are conducted.

If you’ve never been in a clinical trial, you may not know how the process works, what to expect, or even how to find a study you’d like to be a part of. Listen to an overview presentation that shares the basics of the clinical trial process, how they have been made safe for patients, the importance of diverse representation in clinical research, and how to decide if participating is right for you.

  • Listen to San Diegans share their experiences participating in clinical trials.

Without study volunteers and the healthcare professionals who oversee these studies, clinical research would not be possible. Hear from local community members who share their experiences participating in a trial in a panel discussion. Our panelists will share why participation is important to them, ways clinical research can be made more inclusive, and will take time to answer any questions attendees have.

  • Education is power.

When it comes to our health, the more knowledge we have about our options, the better choices we can make for ourselves or loved ones. Attending Journey to Better Health | AWARE for All – San Diego will provide attendees with vital informational knowledge about the health and wellness resources available to them, including clinical research participation.

Written by Lindsey Elliott | Marketing and Communications Manager, CISCRP

View this article published by Times of San Diego, here.

Learn more about CISCRP’s AWARE for All program and upcoming events here.

To search for medical conditions in a specific location, visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

Volunteer opportunities with CISCRP, visit our Volunteer page

The Extraordinary Gift of Clinical Trial Participation

Medical heroes can be found everywhere. They are mothers and fathers, siblings, children, friends, colleagues, and everyday people who have chosen to give the extraordinary gift of participation in clinical research.

Their decision to participate is an altruistic gift that always carries risk, usually offers no direct personal benefit, yet contributes profoundly to collective knowledge about the nature of disease, its progression, and how to better treat it. Ultimately, future generations are the direct recipients of this gift.

Most people know very little about clinical trials until they face the sudden and often unexpected prospect of a serious and debilitating illness for which no medication is available or adequate. Typically, patients, their families, their friends, and their healthcare providers must gather information quickly to make decisions about whether to participate. This rush to navigate the unfamiliar terrain of clinical trials invariably feels overwhelming and confusing.

Appreciating medical heroes
In 2004, the Center for Information and Study on Clinical Research Participation (CISCRP) was founded to provide outreach and education to those individuals and their support network considering participation in clinical trials. Based in the Boston area, this nonprofit organization focuses its energy and resources on raising general awareness, on educating patients and the public, and on enhancing study volunteer experiences during and after clinical trial participation.

Our many events and services are designed to improve public and patient literacy, to engender feelings of empowerment and control, to ensure more informed decision-making, and to recognize and appreciate medical heroes.

This special supplement also plays an important part in raising awareness and literacy. It is a reference resource
offering an introduction to clinical trials and thanking the millions of people and the clinical research professional community who, together, help advance medical knowledge.

At the present time, nearly 4,000 experimental drugs and therapies are in active clinical trials, and that number continues to grow as improvements are made in detecting disease, in discovering new medical innovations, and in understanding and addressing the root cause of acute and chronic illnesses.

At the very heart of all this promising clinical trial activity are medical heroes to whom we owe our deepest appreciation for their profound
gift of participation.

Written by: Ken Getz | Founder and Chairman, CISCRP

Article from 2022 Clinical Trials Supplement, USA Today. View Supplement Here >

To search for medical conditions in a specific location, visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

Clinical Trial Care and Compensation

From "The Gift of Participation" by Ken Getz, Founder & Board Chair, CISCRP

Payment for participation is considered compensation for your time and commitment to comply with the protocol. Healthy volunteers in phase I studies of a new treatment or device are usually paid for their participation. Study volunteers in phase IV studies of drugs already on the market often receive compensation. And payments in clinical trials are often given to study volunteers when the health benefits of an experimental treatment or new device are not known or are remote.

The compensation amount varies widely and depends on many factors including the length of the clinical trial, the number of visits that you’ll need to make during the study and the number and types of procedures that will be performed. Compensation can range from a hundred dollars to several thousand dollars. Partial payments are made over the course of participation. The amount and schedule of payments is proposed by the sponsor of the clinical trial to the IRB overseeing the study. The IRB will review, and in some cases revise, the proposal to ensure that it does not coerce or influence someone to agree to participate. Patient recruitment advertisements usually list compensation amounts. The informed consent document lists compensation amounts and payment schedules. You can also ask whether a trial is offering compensation and the amount when calling a research center to inquire about participation.

Once participation begins, the research center typically writes each volunteer a check as the study progresses—usually on a per-visit basis. A small bonus may also be paid to volunteers who complete the entire study. In some cases, study doctors may dispense approved medication samples and provide additional care free of charge after the trial to show their appreciation to study volunteers.
Any financial compensation paid to study participants is considered taxable income by the Internal Revenue Service (IRS). However, research centers are obliged to report to the IRS only payments to individuals that total $600 or more for the year. These Form 1099s for “Miscellaneous Income” are generally sent out to participants in January, the same month employers are shipping out W-2 forms to their employees.

If a volunteer decides to withdraw from the study before completing the trial, the research center will usually provide partial compensation.

For more information on clinical trials and making informed decisions about volunteering for clinical research, read “The Gift of Participation” by Ken Getz, Founder and Board Chair, CISCRP.

You can find the book here.

To search for medical conditions in a specific location, visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

Improving Representation in Breast Cancer Clinical Trials & Developing Better Medicines for All

Article from CISCRP's Patient Diversity Campaign

Article from our 2021 May Patient Diversity Campaign

The devastating impact of the COVID-19 pandemic, particularly on communities of color, has been a painful reminder of the racial and ethnic disparities that have long existed in our country. In the United States, Black people tend to have higher rates of chronic and progressive conditions, such as high blood pressure, diabetes, and cancer and face greater obstacles when it comes to prevention, detection, and treatment. This is especially true in the breast cancer space. 

  • Black women are often diagnosed at later stages and can often have a worse prognosis [1];
  • Black women face a 20% to 40% higher mortality rate despite overall rates of breast cancer in Black and white women being about the same [2];
  • Black women have a 39% recurrence rate and a 52% higher relative risk of death compared to white women [3]; and
  • Historically, Black women have been under-represented as participants in breast cancer clinical research [4].
Through allyship with community partners and leaders in communities of color, Pfizer is focused on continuing to improve diverse representation in breast cancer clinical trials.

Most recently, Pfizer partnered with the Tigerlily Foundation to launch Health Equity, Advocacy and Leadership (HEAL) sessions to advance education around clinical trials for Black women with cancer. The program focused on:

  • Shedding light on the breast cancer journey for women of color.
  • Improving access to breast cancer clinical trials for women of color.
  • Building trust and enhancing the relationship between breast cancer patients and their care partners.
  • Educating women of color on clinical trials and strengthening their capacity to increase awareness and participation in breast cancer clinical trials. 
  • Identifying barriers and determining solutions that can improve access to breast cancer clinical trials, with the hope of sharing these learnings in other treatment areas.

“Race, literacy, financial barriers, access, social, systemic and hereditary backgrounds should not be determinants of life and health equity,” said Maimah Karmo, President, Tigerlily Foundation.

“There are significant opportunities to strengthen engagement among the Black community, healthcare providers, and medical organizations, toward improving health and health outcomes. In order to bring about change, we have banded together with colleagues and friends to advocate for increased access and awareness of breast cancer research for women of color.”

“We are excited to transform systems globally – with one vision – to champion Black breast cancer as a social justice issue and eradicate as many barriers as possible that lead to loss of life for Black women.” 

Race, ethnicity, age, and sex can all impact how different people respond to the same medicine or vaccine. This is why diversity among clinical trial participants is so important. The more diverse a group of clinical trial participants, the more we can learn about safety and efficacy of a potential medicine or vaccine for people who have characteristics like those of the participants. Participation is entirely voluntary and for those in a position to give it, it is a gift.

As a leading global pharmaceutical company, Pfizer is committed to working with Tigerlily Foundation and communities of color to help reduce health disparities. The HEAL sessions provided an inspiring forum that reinforced old and uncovered new commonalities, obstacles, unique experiences of Black patients, and the gaps in access to clinical trials as an option to consider. Each session allowed Pfizer and patient advocates from the Tigerlily Foundation to have open and honest dialogues on the disparities for Black women living with breast cancer, and un-cover potential solutions and tools for patients, caregivers, healthcare professionals, and clinical site staff. 

Carmen White, Pfizer Director, Multicultural Participant Experience said, “I’m so thrilled that the Tigerlily patient advocates, also known as ANGEL Advocates, are among our partners to improve the overall trial experience for future patients. I left each HEAL session moved and motivated.”

Equity is one of Pfizer’s four core values. From medical grants aimed at actively reducing the disparities in care, to resources for patients, caregivers, and healthcare professionals to navigate their unique cancer journeys and treatment decisions, Pfizer has made it a priority to be inclusive, act with integrity, and ensure every person is seen, heard, and cared for. 

Representation matters in clinical research because it ensures that medicines and vaccines in development benefit all.

The HEAL project demonstrates one way Pfizer is doing its part in ensuring women of color are represented in clinical trials. To learn more about joining a clinical trial, please visit With your help, breakthroughs for all are possible.

1. ACS, American Cancer Society (2016) Breast can-
Society, Atlanta
2. Breast Cancer Screening in Women at High-er-Than-Average Risk: Recommendations From the ACR. Monticciolo, Debra L. et al. Journal of the Ameri-can College of Radiology, Volume 15, Issue 3, 408 – 414
3. Black Women Have Higher Risk of Recurrence Than Other Ethnicities, Oncology Times: January 5, 2019 – Volume 41 – Issue 1 – p 24 doi: 10.1097/01. COT.0000552839.22529.72
4. Bonner D, Cragun D, Reynolds M, Vadaparampil ST, Pal T. Recruitment of a Population-Based Sample of Young Black Women with Breast Cancer through a State Cancer Registry. Breast J. 2016 Mar-Apr;22(2):166-72. doi: 10.1111/tbj.12545. Epub 2015 Dec 14. PMID: 26661631; PMCID: PMC4775403. Accessed April 15, 2022

Community Advisory Board Helps Biogen Promote Diversity in Clinical Research

Article from our 2021 May Patient Diversity Campaign

Fifteen years ago, at the age of 42, Israel Robledo was diagnosed with Parkinson’s disease. Shocked, he spent the next nine months coming to terms with his diagnosis. “I was married. I had three girls at home. I was working as a schoolteacher. And I was thinking, ‘Oh my gosh, my life is over,’” he says. “I only knew about older people having Parkinson’s.”

But, after that first nine months, Robledo realized that being a victim didn’t suit him. So, he decided to be proactive and became a patient advocate for those with Parkinson’s disease, working to ensure transparency and diversity in clinical research. Robledo, who is Hispanic, is one of 18 members from underrepresented communities offering their experience to biotechnology company Biogen.

Community Feedback

The Community Advisory Board (CAB) was established to serve as a bridge between Biogen team members and communities that have encountered a lack of education, awareness and access to clinical trials. This includes those who identify as Black or African American and Hispanic and/or Latino, and it has recently expanded to include Native Americans, Indigenous People, Asian Americans and Pacific Islanders. Further compounding these issues is the distrust of clinical trials due to historical events and injustices.

“Let’s face it, pharmaceutical companies don’t have the best reputation,” Robledo observes. “But Biogen is building trust. They realize people of different races and ethnicities react differently to medical issues and to clinical trials.”

The Board was set up in partnership with the Center for Information and Study on Clinical Research Participation (CISCRP), a nonprofit dedicated to educating patients and the public on clinical research participation.

The CAB’s role is two-fold: Help inform Biogen team members on issues regarding race, ethnicity, associated health disparities and awareness initiatives, as well as help Biogen to better communicate with underrepresented communities on points of concern and barriers to accessing clinical trials.
“In forming a Community Advisory Board that is really diverse in membership – representing not just different races and communities, but also individuals who identify with living with conditions and disease areas that Biogen researches – we have the opportunity to listen and learn,” explains Kate Wilson, Biogen’s Head of Health Equity in the Patient Engagement, Equity and Transparency team.

Clear Messaging
Through ongoing conversations on messaging, tone and images, Biogen and CAB members have worked together to create honest and transparent communications geared toward underrepresented communities, their healthcare practitioners and their caregivers. “CAB members were co developers of these materials,” notes
Wilson. “They had seats at the table, and had direct input and feedback. That is how we built our messaging.”

CAB members have provided hundreds of points of feedback on sharing information to patients, ranging from trial descriptions to logistics (such as whether a patient is reimbursed for their travel expenses or paid for their time) to whether a person needs to reveal their immigration status – a real concern for many people and something that Biogen now addresses in its assets. “In all of our materials, we make sure that patients know that information about immigration status will not be collected in any Biogen clinical trial,” says Wilson.

Robledo credits the company for its approach of making direct, immediate changes to communication
materials based on CAB members’ input. “I’ve been a patient advocate with many pharmaceutical
companies, but none have been like Biogen,” he says.


“When other companies ask for patient input, they say, ‘This is what we’ve done. Tell us if you like it or not.’ But Biogen says, ‘Tell us what we need to change so that it
impacts the patient community the way it needs to.’”


The final products are, as Robledo says, “pretty darn good. I take pride in saying these materials are something that we came up with. Providing a voice is why I became a patient advocate.”

Looking to the Future
The CAB and Biogen’s work towards building diversity, equity and inclusion into its clinical research is garnering industry attention, winning the 2021 Global Pharma Patient Champion Award. And Biogen’s recent addition of voices from other underrepresented communities points toward its continued efforts to better understand the
needs and challenges among various populations. The end goal: to better develop potential medicines that are safe and effective for all.

“It’s our way of ensuring that a diverse voice is heard and built into our clinical development and the way we approach drug development,” Wilson says.


“When we look at the work ahead of us to really improve representation in our clinical trials, it’s so critical that we’re involving the diverse communities and voices in that process.”

Press Release: Center for Information and Study on Clinical Research Participation Receives National Award from Health Industry Leaders

Healthcare Leadership Council Honors CISCRP for Promoting Engagement and Partnership Between Clinical Research Professionals, Patients, and the Public

CAMBRIDGE, MA – The Healthcare Leadership Council (HLC) honored the Center for Information and Study on Clinical Research Participation (CISCRP) with its Redefining American Healthcare Award at a ceremony in Cambridge on Monday, June 6. The event was hosted by BMS, a collaborator of CISCRP’s.


The Center for Information and Study on Clinical Research Participation is a non-profit organization dedicated to educating and informing the public, patients, medical/research communities, the media, and policy makers about clinical research and the role each party plays in the process. Its vision is to educate and empower patients and the public to be viewed and engaged as partners in clinical research.


Healthcare Leadership Council executive vice president, Michael Freeman, praised CISCRP for its impact on clinical trial diversity. “Having a deep understanding of what information influences the decision to participate in a clinical trial has enabled CISCRP to address concerns and make the public feel heard. The multi-pronged approach this group has taken to strategically improve health literacy in targeted communities while working to build trust in the process, has resulted in greater diversity in participation of clinical research trials.”


“CISCRP is truly a pioneer and a leader, bringing together stakeholders across the clinical trial universe to help us improve the accessibility and experience for patients. You have been at the forefront of promoting the importance of diversity. When the pandemic hit, it was CISCRP who was the very first organization to reach out about what this means from the diversity perspective,” stated Richard Campbell, Vice President of Global Clinical Trial Planning & Alliance Management at BMS,


“We are thrilled to be receiving this award,” said Ken Getz, CISCRP Founder and Board Chair. “It is an honor to join such a notable community of past awardees, each of them passionate and committed to educating patients and the public, improving access to care, and engaging with patients and their families as valued partners in clinical research and clinical care.”


Assistant Speaker of the House Katherine Clark, provided a recording to congratulate CISCRP for receiving the award. “CISCRP is improving outcomes for individual patients as well as research and participation for years to come….Your dedication to patient outreach and education has improved countless lives, and on behalf of my colleagues in Congress, I thank you for your contribution to our nation’s health.”


Another collaborator of CISCRP, Jonathan Jackson, Executive Director of the CARE Research Center at Massachusetts General Hospital and Harvard Medical School, shared with the audience, “The best group in town for healthcare education and patient engagement is also the best group in the nation when it comes to this work….The secret to this approach is ensuring that every patient and participant irrespective of their background or history with clinical research has an opportunity to be fully empowered in navigating clinical trials….To Ken and to CISCRP, congratulations on recognition of your decades of engagement work.”


The Healthcare Leadership Council created the Redefining American Healthcare Award to recognize best practices and programs in communities and organizations across the nation that optimize care for vulnerable patients. Award recipients are organizations developing and activating cost-effective, measurable community programs promoting a patient-centered approach to care that considers outside social factors to achieve the best outcomes.

A link to the recording of the ceremony can be found here: