Count Me In: Why the Metastatic Breast Cancer Project Matters

Count Me In (CMI) is a nonprofit organization committed to making it possible for cancer patients anywhere in the US and Canada to be partners in cancer research.

To date, CMI has launched projects in metastatic breast cancer (MBCproject.org), metastatic prostate cancer (MPCproject.org), angiosarcoma (ASCproject.org), esophageal and stomach cancer (ESCproject.org), and brain cancer (BrainCancerProject.org). Each project enables patients to click “Count Me In” to sign up and share their medical history, experiences, and samples and to learn with us along the way.

I joined the CMI team a little over a year ago with the aim of bringing more communities of color to the cancer research table. As a woman of color, I know that it’s a table that our communities have been traditionally omitted from. But with the overall goal to advance our understanding of cancer across the board, it is imperative that everyone is both included in the conversation, and also empowered to own a piece of this process. 

It is critical for our projects to represent all people diagnosed with this disease. We have been partnering with and learning from African American, Hispanic, and Latinx patients and advocates in order to start addressing disparities in research participation. I’m excited about our pilot community projects so far and look forward to rolling out new and scaling up some of the initiatives that we’ve developed in collaboration with communities across the United States over the last year.

In fall 2018, we launched a pilot initiative exploring the potential partnership between CMI and faith-based organizations, starting with a faith-based community outreach pilot collaborating with the Health Ministries Network (HMN) and the Minority Coalition for Precision Medicine (MCPM). Alongside our partners, we helped host a gathering of over 40 pastors and representatives of churches in the Baltimore and Washington DC area, with approximately 100 individuals in attendance, focusing on breast cancer, participation in research, and the power of unity and increased awareness. As we move forward, we hope to expand our reach into other faith spaces and to build off of the lessons that we’ve learned through our existing faith-based engagement pilots.

Currently, we are working to translate the Metastatic Breast Cancer Project and related materials into Spanish in order to better reach Hispanic and Latinx communities impacted by metastatic breast cancer. Much of what has been developed has been built alongside members of the community through Spanish speaking focus groups from across the United States and Puerto Rico.

We hope to launch this new initiative in the near future and expand language accessibility within cancer research, not only to provide for new opportunities for interested individuals to participate, but to address the larger underlying issue - health disparities.

We are also exploring other avenues to engage and empower entire communities across the country, beyond patients alone. Other approaches under consideration include the exploration of key community spaces and stakeholders such as barbershops and hair salons, senior centers, and community health workers.

I’ve included more information about these pilots at the end of this post, for anyone who is interested.


Why my job matters

To really understand why my job matters and why pilots like these are so vital, I think it’s also important to know something about the history between these communities and the research community.  For example, the most underserved populations are the most adversely affected by metastatic breast cancer and also experience the greatest number of entrenched barriers to research participation.

Compared to non-hispanic whites, there exist significant racial disparities when it comes to cancer -- African Americans, Hispanics/Latinas, and other minorities often suffer lower cancer survival rates and worse prognosis [5]. 

African American women are more likely than white women to die of breast cancer [1]. 

For Hispanic/Latina women, breast cancer is the most commonly diagnosed cancer and is the leading cause of cancer death [4]. 

Both groups are more often diagnosed with triple-negative breast cancer - an aggressive subtype of breast cancer with limited treatments and poorer prognosis [1,2,3].

Compounding this issue is the lower rate of participation by minorities within research and clinical trials. 

According to a recent research article published in JAMA Oncology, approximately one-third of clinical trials that led to the approval of new cancer drugs between 2008-2018 did not even report on the race of clinical trial participants [6].

For trials that did report on race, there was drastic underrepresentation of African American and Hispanic patients - particularly concerning when compared to the proportion of the African Americans and Hispanic populations that are diagnosed with cancer [6]. 

Participation in research and clinical trials can be linked to the overwhelming history of abuse committed against these communities, resulting in deep mistrust. 

Communities of color have long been subjected to inequitable health care practices and medical atrocities such as black bodies being often used for medical experiments during slavery, the illegal practice of utilizing cadavers for teaching purposes, and even inhumane experimentation on black women without anesthesia or their consent [7].

Perhaps most infamous of them all was “The Tuskegee Study of Untreated Syphilis in the Negro Male” (read more here) [8]. It has been long suggested that the experiment’s lasting effects extended beyond the 600 men in the study and into their communities, including their families and the greater whole of Black culture. 

Related barriers of research participation have been documented at length, including: “low trust in academic research and researchers, perceived difficulty study logistics, and economic and time constraints faced by potential participants”. Consequently, building trust between researchers and local communities is imperative in engaging diverse communities and ultimately equalizing medical and scientific research to be reflective of and effective for all [9,10]. 

Thus, developing new approaches - including through partnerships and collaborations with communities - stands critical in truly reaching communities that have long been under-served and underrepresented within cancer research.

Beyond racial and systemic dynamics that hinder participation, the truth is that approximately 85% of cancer patients are treated within the community setting, meaning that participation in cancer research – often conducted at larger cancer research and university affiliated institutions – remains geographically accessible to only a limited portion of the cancer patient population across the United States [11]. 

The development of Count Me In’s patient-partnered cancer projects aims to address this challenge and need by offering an easy and simplified means of patient participation online. This opportunity allows for participants to enroll in cancer research studies regardless of where they may live across the United States and Canada. 

At Count Me In, we aim to reach everyone across all of our patient-partnered cancer projects; together, we can accelerate cancer discoveries.

More about our initial pilot projects:

Faith-Based Engagement Pilots

In Fall 2018, we launched a pilot initiative exploring the potential partnership between CMI and faith-based organizations, starting with a faith-based community outreach pilot collaborating with the Health Ministries Network (HMN) and the Minority Coalition for Precision Medicine (MCPM) encompassing the Metastatic Breast Cancer Project (MBCproject.org).

On October 20th, 2018, the organizations hosted over 40 pastors and representatives of churches in the Baltimore and Washington DC area, with approximately 100 individuals in attendance. This collaboration represented a multifaceted interdisciplinary team effort which brought together racially and ethnically diverse faith leaders, community leaders, scientific researchers, and industry partners to engage, educate, and empower minority populations regarding participation in research. 

Rev. Dr. Tamara E. Wilson, HMN’s President, presided as moderator of the gathering, where science and faith connected to provide compassion and support to community members touched by breast cancer. The importance of diversity and minority participation in studies relating to research and precision medicine was an important theme shared with the audience. The MBCproject served as an example where patients are treated as equal partners and together with scientists, work to advance our understanding and accelerate discoveries for metastatic breast cancer. As we move forward, we hope to expand our reach into other faith spaces and to build off of the lessons that we’ve learned through our existing faith-based engagement pilots.

Increasing Access Through Language - Translating the MBCproject.org into Spanish

It is estimated that approximately 60 million people across the United States speak a primary language other than English at home and studies have continually demonstrated that language accessibility - particularly in the context of health and healthcare - improves quality of care and health outcomes, including patient satisfaction, communication, and access [12, 13, 14, 15]. Beyond direct translation of health-related materials and knowledge, cultural and community contexts must also be factored in. Cultural competency in relation to language materials helps make what is translated relevant and community appropriate. These aspects are all being considered, as we work to translate our research project and related materials into Spanish, to reach Hispanic and Latinx communities who are impacted by metastatic breast cancer.

Our approach to the development of these new initiatives and approaches is intertwined with our approach to our patient-partnered cancer projects - much of what has been developed has been built alongside members of the community through Spanish speaking focus groups from across the United States and Puerto Rico. We hope to roll out this new initiative in the near future to expand language accessibility within cancer research, not only to provide for new opportunities for interested individuals to participate, but to address the larger underlying issue - health disparities.

Sources:

[11] Mehmet Sitki Copur, et al. “ReCAP: Impact of the National Cancer Institute Community Cancer Centers Program on Clinical Trial and Related Activities at a Community Cancer Center in Rural Nebraska”. 10.1200/JOP.2015.005736 Journal of Oncology Practice 12, no. 1 (January 1 2016) 67-68. Published online August 11, 2015. PMID: 26265173

[13] Regenstein M . Measuring and improving the quality of hospital language services: insights from the Speaking Together collaborative . J Gen Intern Med .2007 ; 22 ( Suppl 2 ): 356 – 9 . Crossref, Medline, Google Scholar

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Meet the Breast Cancer Baddie Champion

Colleen Nguyen leads community engagement for Count Me In, a nonprofit research organization that empowers patients to accelerate cancer research by sharing their samples, their clinical information, and their voices. She is passionate about cancer research and social justice. She graduated with an MPH from Boston University School of Public Health and a BA from the University of California, Davis.