Latest CISCRP Patient Survey Reveals Diversity Gaps, Yields 5 Tips For Improvement

Despite the FDA introducing a draft guidance document two years ago that outlined strategies to improve minority representation in clinical trials,4 recent studies suggest that racial and ethnic minority populations continue to remain underrepresented across the board, from ophthalmology to oncology studies.5-7 More effort is needed to understand the views of underserved groups, such as ethnic and racial minorities, toward clinical research to improve their enrollment and participation.1

Because it is also important to periodically reassess the values, perceptions, and barriers that may preclude clinical trial participation among potential trial volunteers, the Center for Information and Study on Clinical Research Participation (CISCRP), an independent nonprofit organization in Boston, conducts a biennial global survey called the “Perceptions & Insights” study, assessing public and patient views and experiences in clinical research. The CISCRP 2023 study8 offered valuable information on participant recruitment, improvement of trust and diversity, and optimized technology use as well as adaptations to post-COVID changes in clinical research. By analyzing these findings, we help provide pharmaceutical companies, CROs, regulators, and other clinical leaders with insights and strategies to improve clinical research inclusivity, efficiency, and engagement.

Here, we outline five such opportunities to improve clinical trial recruitment and participation, especially among ethnic and racial minority groups:

1. Increase trial access through HCPS and other trusted information sources.

The foundation of successful clinical trial recruitment and retention lies in the trust, reliability, and accessibility of information sources. For pharmaceutical companies, this underscores the critical importance of prioritizing transparency and actively engaging with patients to make it easier to participate in clinical research studies. By openly sharing information on the risks and benefits of treatment in a language accessible and understandable to patients, study sponsors can significantly enhance public trust.

The outcomes of our 2023 survey further underscored the critical role of physicians and HCPs in this area. We found that HCPs continue to be the most trusted source of information regarding clinical trials. In 2023, an encouraging 23% of potential participants (20% among Hispanic respondents compared to 23% among non-Hispanic respondents; 16% among Black or African Americans compared to 24% among White respondents) reported being asked by their HCPs to consider trial participation, a significant increase from 14% in 2021. While this trend highlights the pivotal role of HCPs, it is merely a starting point toward a more personalized, trust-based approach to engaging with potential trial participants, as our study indicated that the majority (66%) still do not consider clinical research as an option when discussing treatments with their doctor.

Pharmaceutical companies and stakeholders should prioritize leveraging trusted sources of information to build trust and facilitate access to clinical trials. This might mean collaborating more closely with physicians and HCPs — particularly those practicing in minority community settings — to actively strengthen educational efforts, initiatives, and feedback loops between HCPs and trial sponsors. For example, this could include creating clear, accessible content that HCPs can easily review and share with potential participants, providing HCPs with e-learning modules on the latest trial protocols, or easy-to-access online portals that could feature regular updates on upcoming trial recruitment, progress, and outcomes on ongoing or completed trials.

Likewise, patient advocacy and support groups also play a pivotal role, especially among minority communities, with email invitations proving to be the most effective recruitment method. Patient advocacy groups proved to be especially successful in increasing clinical research engagement among Black respondents (12% reported being asked to participate by an advocacy group) compared to White respondents (6% reporting the same), highlighting the importance of leveraging these groups for broader, culturally sensitive trial outreach.

2. Increasing diversity and building trust with patients is mutually beneficial.

The diversity of trial participants is a critical factor that directly influences the trust and relevance of pharmaceutical companies among diverse populations, particularly in light of historical and current injustices in clinical research. The CISCRP study showed that trust in pharmaceutical companies among Black respondents (32%) was more likely to be increased if a company demonstrated workforce diversity. This proportion further increased to 52% when trials included a diverse set of participants.

These findings further reinforce the importance of sponsors to consider targeted and inclusive strategies, which may involve a combination of:

  • implementing policies and practices aimed at recruiting a diverse workforce,
  • ensuring clinical trial participant pools reflect the demographic diversity of the population affected by the condition, and
  • actively engaging with ethnic and racial minority groups and community leaders through direct outreach programs, employing culturally sensitive and language-appropriate materials and communication strategies to effectively engage potential participants.
3. Expand accessibility through alternative site models.

Venturing beyond the traditional clinical trial setting also can offer unique opportunities to enhance the convenience of participation and significantly improve the diversity of trial participants at the same time. According to our study, 46% of participants overall were very willing and 38% were somewhat willing to go to a local pharmacy for their study visits. This trend also was observed among various demographic groups (percent responses of “very willing”: Black: 53%, White: 48%, Hispanic: 44%, Asian 34%).

A separate CISCRP survey performed 10 years ago10 highlighted the benefits of pharmacists directly engaging with patients and providing education about clinical trials. The concept of using pharmacies as alternative sites for studies gained traction, especially when CVS and Walgreens launched their clinical trials initiatives in the early 2020s.11 Despite the noted participant openness, however, 15% of our study respondents were still not very, or not at all, willing to consider a pharmacy site, citing concerns with the facilities/lack of privacy, confidentiality of information, quality of care, and quality of answers to questions.

Outside of the traditional clinical site model, respondents were receptive to three different clinical study models (i.e., hybrid, mobile nurse, and remote) and provided high marks for “very willing to participate” — 43%, 44%, and 43% respectively for each model. Furthermore, having access to some trial site visits closer to home or having some visits conducted virtually were both highly chosen factors for long-term retention, at 66% and 58%, respectively.

CROs and pharmaceutical companies are encouraged to form partnerships with pharmacies and other local health facilities to develop innovative alternative trial sites and clinical study models. Sponsors, however, should carefully establish standardized protocols for alternative clinical sites that prioritize participant convenience and care, ensure appropriate staffing and staff training, and communicate where participant information is securely managed.

 

4. Leverage technology for optimized recruitment, retention, and enhanced participant experience.

The integration of technology in clinical trials is yet another important factor for improving recruitment and diversity. In our study, 34% noted it was very important to use mobile applications, while 32% expressed interest in using eConsent. Technology adoption was notably higher among Hispanic and Black respondent subgroups, and both groups were more likely to cite the importance of mobile app availability and the ability to review and sign documents in an electronic format compared to non-Hispanic and White subgroups. Additionally, 66% of respondents were comfortable using their personal computers for clinical trial data entry, 61% with wearable devices and clinical apps, and 58% with video conferencing with physicians. Text messaging emerged as another helpful tool, with 65% of respondents indicating its usefulness. The use of text messaging in patient communications also has increased since 2021 (22% compared to 29% in 2023). While technology offers significant benefits, some concerns were again noted, with 18% of respondents indicating that smartphone or tablet use during studies disrupted their daily routines.

Pharmaceutical companies might consider focusing on creating secure, intuitive, and user-friendly mobile applications that serve as one-stop portals for trial information, consent, and data collection. Seeking direct input from trial participants and pilot testing the initiative with ethnic and racially diverse user groups before launching these programs will help ensure that these technologies meet the needs of diverse communities. Using wearable devices, text messaging, smartphone apps, and video conferencing may also help to maintain continuous engagement with trial participants and help improve remote monitoring and communication.

5. Retain post-COVID-19 progress made in clinical trials.

Despite its challenges, the COVID-19 pandemic significantly accelerated the use of technology and innovative trial models between 2020 and 2022, and many industry professionals were hopeful about the lasting positive effects of these technological advancements. However, when we compared our 2023 study findings with the data from 2019 and 2021, we noticed a shift to pre-pandemic practices, including lesser use of eConsent forms and reduced participant communication during and after the trial. For example, from 2021 to 2023, there was a decrease of 12% for eConsent usage and 9% for video consent usage.

Pharmaceutical companies should continue to stay agile and adaptive in response to evolving trends and challenges while maintaining the momentum toward more flexible, technology-driven trial models. One such strategy may involve commitment to the #NoGoingBack initiative12, ensuring that innovations and efficiencies gained during the pandemic are not lost but, rather, built upon. Emphasizing clear communication during and post-trial, timely feedback, and quality of care in clinical trials may perhaps help. This includes continuing to leverage virtual visits, remote monitoring, and digital consent processes, and ensuring these practices solidify in the clinical trial landscape.

Putting It All Together

By enhancing trust and diversity, expanding access to alternative clinical sites, and leveraging technology use, the pharmaceutical industry and stakeholders may drive significant advancements in clinical research and move toward a more inclusive and participant-friendly future. We propose several strategies that, if adopted, would help improve access and deepen engagement in clinical trials, especially among ethnic and racially underrepresented communities.

About the CISCRP 2023 Perceptions & Insights Study

The CISCRP 2023 Perceptions & Insights Study provides a global overview of current trends, challenges, and opportunities within the clinical trial industry from a patient and public perspective. The questionnaire was developed with input from a cross-functional workgroup — including representatives from pharmaceutical and biotechnology companies, patient advocacy groups, and CROs. It was distributed online from April – June 2023 with support from Clariness, James Lind Care, Benchmark Research, and Rare Patient Voice and resulted in responses from 12,017 participants. This article does not capture in totality the insights derived from the study; however, you may access additional resources here: https://www.ciscrp.org/results-from-ciscrps-2023-perception-insights-study/. Also of note, a peer-reviewed article that takes a deeper dive into the diversity insights captured by the survey respondents is forthcoming.

By Annick de Bruin, CISCRP

References:

  1. Raven-Gregg T, Shepherd V. Exploring the inclusion of under-served groups in trials methodology research: an example from ethnic minority populations’ views on deferred consent. Trials. 2021;22(1):589. doi:10.1186/s13063-021-05568-z
  2. MacLennan DL, Plahovinsak JL, MacLennan RJ, Jones CT. Clinical Trial Site Perspectives and Practices on Study Participant Diversity and Inclusion. Clin Pharmacol Ther. 2023;113(3):670-679. doi:10.1002/cpt.2817
  3. Corneli A, Hanlen-Rosado E, McKenna K, et al. Enhancing Diversity and Inclusion in Clinical Trials. Clin Pharmacol Ther. 2023;113(3):489-499. doi:10.1002/cpt.2819
  4. Russell ES, Aubrun E, Moga DC, et al. FDA draft guidance to improve clinical trial diversity: Opportunities for pharmacoepidemiology. J Clin Transl Sci. 7(1):e101. doi:10.1017/cts.2023.515
  5. Bains A, Osathanugrah P, Sanjiv N, et al. Diverse Research Teams and Underrepresented Groups in Clinical Studies. JAMA Ophthalmol. 2023;141(11):1037-1044. doi:10.1001/jamaophthalmol.2023.4638
  6. Aldrighetti CM, Niemierko A, Van Allen E, Willers H, Kamran SC. Racial and Ethnic Disparities Among Participants in Precision Oncology Clinical Studies. JAMA Netw Open. 2021;4(11):e2133205. doi:10.1001/jamanetworkopen.2021.33205
  7. O’Donoghue J, Luther J, Hoque S, et al. Strategies to improve the recruitment and retention of underserved children and families in clinical trials: A case example of a school-supervised asthma therapy pilot. Contemp Clin Trials. 2022;120:106884. doi:10.1016/j.cct.2022.106884
  8. CISCRP 2023 Perceptions and Insights Study. Accessed February 2024. https://www.ciscrp.org/services/research-services/perceptions-and-insights-study/.
  9. CISCRP. Journey to Better Health Mobile Exhibit. Bringing Clinical Research Information to Local Communities. Accessed February 2024. https://www.ciscrp.org/mobileexhibit2023/
  10. Getz, Kenneth; Leveraging Pharmacists as a Channel to Raise Clinical Research Literacy Among Patient Communities. Applied Clinical Trials, Vol. 22, Issue 10. October 2013. Accessed February 2024. https://www.appliedclinicaltrialsonline.com/view/leveraging-pharmacists-channel-raise-clinical-research-literacy-among-patient-communities
  11. Natalia Mesa. “Walgreens Launches Partnership with Prothena to Compete with CVS, Walmart” May 01, 2023. Biospace. Accessed February 2024. https://www.biospace.com/article/walgreens-launches-partnership-with-prothena-to-compete-with-cvs-walmart/
  12. #NoGoingBack. Accessed February 2024. https://www.nogoingback.health/.

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.

Learn more >

Improving Health Outcomes Through Equity and Access

Better access to healthcare equals better health outcomes. 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. Biogen’s approach toward health equity 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.

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 communities by partnering with organizations to educate, build awareness, establish trust, and drive health equity.

When recruiting for clinical trials, Biogen teams are building patient engagement strategies including setting race and ethnicity recruitment targets for their trials that reflect the patient populations they intend to treat.
These targets are supported by robust DE&I and patient-focused drug development strategies. The results are
clear with 2021 having 100% of 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.

Biogen has also 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 clinical trials and equitable access.

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.

To learn more, visit, biogentriallink.com

Written by Biogen

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

DEI Series — Educating Clinical Research Practitioners Through Video

Recently, CISCRP partnered with WCG to create a video for researchers and study staff that emphasizes the importance of diversity in clinical trials. In addition to educating the public, raising awareness among research professionals about the importance of Diversity, Equity, and Inclusivity (DEI) is critical to increasing cultural competence and understanding of participants’ needs.

You may have read our post about how videos are becoming a key tool of health literacy, and how clinical research could benefit from more videos communicating information in an accessible way. In this post, we dive into our creative process for producing a video with that objective in mind.

We were delighted to collaborate with WCG on this video. WCG partnered with CISCRP to produce this video because of our expertise in educating the public and clinical research professionals about the importance of diversity in clinical research. Like CISCRP, WCG is committed to helping ensure that the public gets the most effective and safe treatment possible. 

Because of that urgent need, WCG were very excited to work with CISCRP on addressing this topic. We know this engaging video collaboration will help energize researchers, and especially site staff, to bring more diversity into their trials.

To see the video, click here.

Research and Creative Planning

As with any complex project, whether you’re writing a novel or baking a cake, it’s important to plan every step in advance. However, for this project, assessing our audience’s needs, perceptions, and general level of cultural competency would determine how we structured the tasks ahead – so we started there.

The purpose of this video was simple: to encourage clinical research professionals to take tangible actions to ensure their trials had diverse populations. Given our experience developing educational materials on diversity in clinical research by collaborating with patients, their communities, and the public to understand their concerns and needs, we knew the key messages researchers needed to see and hear. Delivering that message in a way that will have an impact was the challenge.

Clinical research professionals may already know about the importance of diversity in clinical research and may even know about the available tools and practices to improve their trial’s diversity. So, how could we convince them to make more of an effort to invest in and implement these tools and practices?

We certainly didn’t want to bore them with information they already knew. Instead, we decided to focus on an impactful narrative to give them that extra push and reinvigorated perspective. And we had to do it in under 3 minutes.

Script

We decided on an animated video that portrayed a realistic scenario: patients from a diverse background whose prescribed treatments were not as effective or tolerable as demonstrated in the less diverse study populations during clinical trials. The storyline focuses on one patient to begin with, then shifts to a larger patient population who all realize that the clinical trials for the treatment they needed did not include patients from their respective communities.

As each patient asks their doctor some tough questions, treatments disappear from the shelves of the pharmacy shown in the animation:

“Could my race affect how this drug works?”

“Was the drug tested on women like me?”

“Could my weight be why this drug didn’t work?”

Then in the final scene of this part of the video, the problem is summed up by a disappointed patient:

“I think I understand. They didn’t test this for people like us.”

After the scenario, the narrator addresses this problem directly to the audience. It was important that the messages were not received as a critique of researchers—as we say in the video, there’s already so much good work they’re doing. Rather, we wanted to bring this subject to the top of their minds and say that by taking steps to ensure diversity in their trials, we can avoid situations like the one they just watched.

The script went through several drafts which included reviews from CISCRP’s team, our WCG collaborators, and subject matter experts on DEI in clinical research.  Each round of feedback included more voices and perspectives from folks in the clinical research world. As a result, each draft became more engaging, appropriate, and relatable to our intended audience.

For example, the original plan was to follow one patient. In the final script, we decided to combine the stories of five diverse participants. Then we realized that our characters’ names were not diverse. At first, they were named common names, which likely wouldn’t represent the diverse groups that are underrepresented in clinical research. We also ensured we represented the doctor, a “Dr. Smith,” from a white man to a black woman.

Key Learnings

In early drafts of the video animations, while the characters had different skin tones, they didn’t have other aspects that represented diversity. Something important we all have to keep in mind is that diversity comes in many different forms—from some of the more obvious things, like race, ethnicity, sex, and gender, to more specific details like health conditions, weight, and even lifestyle. So, we made a few subtle tweaks to represent diverse bodies, appearances, and cultural appearances.

Also, in choosing the voice-over actor, we settled on someone who represented a diverse population to add credibility to the messaging.

Some of the considerations went beyond diversity. We wanted our video to feel real, because the scenario we crafted is something that unfortunately happens too often. Given the prevalence of this issue, we also wanted the video to demonstrate sensitivity towards the difficult situations participants often face.

For example, in early drafts of the video, the doctor was smiling throughout, even as she learned that her patients were suffering. Not only is this not realistic, it appeared insensitive and even offensive. Still, we had to find the balance between making character emotion powerful while making sure they didn’t act like children’s cartoon characters.

Finally, once we were done tweaking the thematic elements of the video, we polished the presentation to a fine, professional gloss. Over the course of three drafts, spread out over weeks of review, we gave feedback on the timing of edits, the tone and speed of the voice actors through specific sections, and the subtle connotations of the animated characters’ movements. All of this was to ensure that this video was produced to the highest standards.

Never call it a day

As we’ve mentioned in other posts, the health literacy process does not stop here. We want to learn how effective this video is, and what we can do to improve our communication and education in future projects. Whether we’re making content for a professional audience or for the general public, the insights we gain on any given project accumulate and inform the production of future projects.

Written by Scott Finger, Senior Editor – Health Literacy, CISCRP

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

Broadening the Lens of Diversity for More Inclusion in Clinical Research

Although there is still a “guinea pig” stigma associated with clinical research participation, for many, clinical trials offer free or low-cost access to testing, care, and cutting-edge treatments that are simply not accessible or available. Years ago, my own mother’s participation in an Alzheimer’s Disease study uncovered a life-threatening condition that she wouldn’t have known about, had she not been a participant. Thankfully, after a required surgery, she is still alive and well. Many other friends, family, and colleagues have shared stories with me about their chronically and terminally ill loved ones who extended their lives and improved their quality of life thanks to clinical trial participation. However inspiring, the commonality across these success stories is that the patients belong to an essentially homogenous population of white, insured patients living in or near urban areas.

As I have been attending industry events and watching the topic of diversity trend in our sector of the world, I see the emerging initiatives to impact racial and ethnic diversity in clinical research and ask myself whether the pharmaceutical and biotechnology sector can and should do more to leapfrog historic approaches to diversity. That is, instead of simply forcing statistical study populations to reflect traditional demographic categories, can we make trials truly inclusive and inviting to all people so that the resulting participant population is reflective of all facets of culture? If we do this one group at a time – race, ethnicity, religion, biological sex, socio-economic class, etc. – we risk leaving people without access to a valuable health care resource and our industry without access to important information.

Beyond the Binary

An important group for our industry to consider are those who identify as being part of the LGBTQ+ community. How one identifies is an integral part of traditional inclusion/exclusion from clinical research trials and limits access for people who do not self-identify in traditional categories.

A recent survey conducted on Ipsos’ Global Advisor online platform among more than 19,000 individuals aged 16 (or 18, depending on the country), illustrated that on average, 80% of people identify as heterosexual, 3% as gay, lesbian or homosexual, 4% as bisexual, 1% as pansexual or omnisexual, 1% as asexual, 1% as “other,” and 11% don’t know or won’t say. On average, 1% of adults identify as transgender, nonbinary/nonconforming/gender in another way – rather than as male or female.

As the population of earth approaches 8 billion people, we must consider how to engage this important community in healthcare generally and clinical research specifically. Diversity is inherent, inclusion is a choice. This data underscores the need to put aside binary categories and move to criteria that include all eligible patients regardless of how they identify against the traditional paradigm of gender and sexuality.

Recently, our team partnered with the non-profit organization CISCRP to convene a group of patients who identified as being part of the LGBTQ+ community and explore their experience with the healthcare system generally and clinical research specifically. I had the privilege of participating in the conversation and was stunned by the feedback from the group.

Key Takeaways

Over the course of two, two-hour virtual sessions, there was a lot of really interesting discussion. For me, some of the key takeaways were:

  • The LGBTQ+ community is a broad category of communities so there is no one-size-fits-all approach
  • Trust is a key barrier to care for the LGBTQ+ community
  • Patients actively seek LGBTQ+ providers and those trained on LGBTQ+ issues
  • Representing the LGBTQ+ community in research as a driver for participation but diversity quotas are not enough to drive engagement

There are also considerations of what inclusivity of the full range of LGBTQ+ identities in all aspects of care mean, including:

  • Removing unnecessarily gendered language, imagery, and décor from forms, patient materials, and clinical areas
  • Creating inclusive options on multiple-choice forms to account for all LGBTQ+ identities
  • Refining approaches to clinical lines of questioning to ensure sensitivity to LGBTQ+ identities and focus on questions required for care and research
  • Including trusted LGBTQ+ advocacy organizations and local, community centers in health and research initiatives

Diversity is Inherent, Inclusion is a Choice

Including the LGBTQ+ community in diversity, equity, and inclusion initiatives is not only good for patients, but also valuable, important, and essential for the pharmaceutical and biotechnology industry. When discussing the value of clinical trial participation to the industry, the ratio we all talk about is 1 in 200 – meaning that one in 200 people, regardless of health status, need to participate in clinical research to enroll all the studies in clinical trials.gov at any given time. Allowing barriers to access for any population is not just unethical and bad for science, it’s also bad for business. Ensuring diversity, equity and inclusion means more study participants, thorough science, and predictable outcomes for all potential patients.

The path to inclusivity for the LGBTQ+ community is no different from those proposed for the inclusion of other populations underrepresented in clinical research. As Van Johnson suggested in a recent episode of the Totally Clinical podcast and echoed by our LGBTQ+ patient panel, the key to diversity, equity and inclusion is a holistic approach. The way to create a clinical trial environment that is inclusive is to ensure that community members have a seat at the table – LGBTQ+ patients, physicians, advocates, and others. In addition to promoting the diversity in today’s research community, this work will likely involve an expansion to include new investigators, sites and site networks that serve the LGBTQ+ community and enablement of those sites with tools, training, and technologies that can bring them onboard quickly and guide them with consistent, responsive and proactive content and communication.

As the global head of strategy at Teckro and daughter of a clinical trial participant, it is my intention to play an active role in supporting diversity, equity, and inclusion efforts so that clinical research is a care option available to all patients. If you are a sponsor, investigator, patient, or other stakeholder in clinical research and are advancing a DEI or CRAACO initiative, I invite you to join the conversation on our Totally Clinical industry podcast.

Written by Malia Lewin, Global Head of Strategy at Teckro | www.teckro.com

To read the original article and learn more, visit Teckro’s website here: https://teckro.com/resources/blog/lgbtq-inclusion-clinical-trials  

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 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 pfizerclinicaltrials.com/learnmore. With your help, breakthroughs for all are possible.

References
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.”
Read article written by Pfizer here

Why Clinical Trial Diversity Is Key To Increasing Access To Routine Care And Innovative Treatment Options

By: Luther T. Clark, MD, Deputy Chief Patient Officer, Merck

The COVID-19 pandemic has shone a light on longstanding health care disparities and amplified the importance of clinical trial diversity, especially participation of those patients and communities disproportionately impacted by the disease being studied. Since clinical trials function as the gatekeeper to bringing new medicines safely to patients and communities, it has become increasingly important that diverse communities be represented in our research efforts.

Clinical trial participation provides access to possible new and innovative treatment options for patients, an especially important benefit for those who have conditions with limited treatment options – such as some forms of advanced cancer.  It is important to note that, while not all clinical trial participants will receive the investigational treatment being evaluated in the clinical trial, all patients receive high quality standard-of-care, which is the standard treatment that is used for the health condition.

During the COVID-19 pandemic many patients have delayed or avoided routine medical care for underlying conditions – a hidden harm that has further amplified its already enormous health toll. While pandemic associated medical care delays and avoidance may be understandable, safely returning to essential care is imperative for improving patient outcomes and reducing disparities as well as increasing patient access and ability to participate in clinical research. 

Pandemic Associated Medical Care Delays and Avoidance
During the COVID-19 pandemic, delays and/or avoidance of medical care for both routine and serious conditions have been widely reported. According to one recent analysis (1) an estimated 41% of adults in the U.S. delayed or avoided medical care because of concerns about COVID-19 – including both routine care (31.5%) and urgent or emergency care (12.0%).  Avoidance of urgent or emergency care was more prevalent among individuals with underlying medical conditions, Black adults, Hispanic adults, young adults, persons with disabilities and unpaid adult caregivers. When patients delay or avoid medical care, they increase both their morbidity and mortality risks. For example, 

  • Vaccines play an important role in helping to protect people from preventable diseases, but data show concerning decreases in vaccination rates since the onset of the COVID-19 pandemic. A recent international poll revealed that 73% experienced disruptions in vaccine demand.
  • Similarly, while routine cancer screenings have contributed to important cancer survival gains, screening rates have dropped during the pandemic. In the U.S. alone, approximately 285,000 breast cancer screenings, 95,000 colon cancer screenings and 40,000 cervical exams were missed between March 15 and June 16, 2020.

Cancer is a particularly powerful example of how longstanding inequities in care coupled with the pandemic’s impact on reduced access/utilization of routine health care can converge and create an even more devastating impact on patients, families and communities. Cancer incidence is known to be disproportionately higher in under-represented minorities compared to other groups, and access — to timely diagnosis, quality care and to clinical trials of promising therapies — is suboptimal among people of color. Furthermore, cancer and its treatment predispose to many other health outcome disparities, as demonstrated by the disproportionate impact of COVID-19 on morbidity and mortality rates among people with cancer.   

Social Determinants of Health (SDOH)
Social and economic factors, referred to as social determinants of health (i.e., education, economic stability, neighborhood, health and health care access, social and community context) not only contribute to healthcare disparities but may also negatively impact the decision and the ability of patients to participate in clinical research (2-4).  By recognizing and understanding the SDOH, we can help accelerate return to medical care, overcome barriers to minority participation in research, and ultimately improve patient outcomes. Effective and meaningful community engagement, collaborations, and partnerships are critically important for addressing all of the SDOH, and especially helpful for increasing awareness, education and building trust.

Bridging the Digital Divide
Digital technologies have many potential benefits for improving healthcare, including the potential to improve healthcare quality, patient safety and reduce disparities (5).  However, inequities in access to virtual technologies do exist and may lead to or exacerbate disparities. Often referred to as the “digital divide”, there is a considerable difference between those patients/communities that have access to digital technologies and the ability to understand and use them effectively (digital literacy) and those who do not.  For example, access and utilization of digital health care technologies are known to be significantly lower among older Black and Hispanic patients than their white or Asian counterparts.  In addition to differences in access and digital literacy, structural inequities (i.e., lack of broadband internet availability) impact disproportionately some groups and communities – racial and ethnic minorities, rural communities and individuals of lower socioeconomic status (6). Without recognition and action, the digital divide will only widen.

Summary and Conclusions
It is important for the medical and public health community, policymakers, employers and health advocates around the world to come together to encourage people within our communities to get the care they need.

  • As we join the multi-sector effort to combat COVID-19, we must also focus on helping people in our communities get the routine care they need to protect their long-term health.
  • It’s vital to support individuals and patients in returning to care because delays or cancellations are associated with significant health risks.
  • While the COVID-19 pandemic has caused unprecedented disruption to the healthcare system, it has also led us to identify opportunities to strengthen it for the future. We are committed to working with stakeholders to enact solutions that will improve patient care and help protect public health over the long term.

 

This article was also featured in our Patient Diversity Campaign. See Campaign Here.

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References:

  1. Czeisler MÉ, Marynak K, Clarke KE, et al. Delay or Avoidance of Medical Care Because of COVID-19–Related Concerns — United States, June 2020. MMWR Morb Mortal Wkly Rep 2020;69:1250–1257. DOI: http://dx. doi.org/10.15585/mmwr.mm6936a4
  2. Clark LT, Watkins L, Pina IL, Elmer M, Akinboboye O, Gorham M, Jamerson B, McCullough C, Pierre C, Polis AB, Puckrein G, Regnante JM. Increasing Diversity in Clinical Trials: Overcoming Critical Barriers. Curr Probl Cardiol 2019; 44:148-172
  3. Asare M, Flannery M, Kamen C. Social Determinants of Health: A Framework for Studying Cancer Health Disparities and Minority Participation in Research. Oncol Nurs Forum. 2017 January 02; 44(1): 20–23.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5583708/pdf/nihms893015.pdf
  4. Weinstein JN, Geller A, Negussie Y, Baciu A. Communities in Action: Pathways to Health Equity. Report of the National Academies of Sciences Engineering Medicine (2017). https://www.ncbi.nlm.nih.gov/books/NBK425848/pdf/Book-shelf_NBK425848.pdf
  5. Lopez L, Green AR, Tan-McGrory A, King R, Betancourt JR. Bridging the digital divide in health care: the role of health information technology in addressing racial and ethnic disparities. Jt Comm J Qual Patient Saf 2011 Oct;37(10):437-45. doi: 10.1016/s1553-7250(11)37055-9.
  6. Campos-Castillo C, Anthony D. Racial and ethnic differences in self-reported telehealth use during the COVID-19 pandemic: a secondary analysis of a US survey of internet users from late March. Journal of the American Medical Informatics Association, 28(1), 2021, 119–125. doi: 10.1093/jamia/ocaa221