Learn eCORE is pleased to feature this blog on clinical research diversity and health equity written by Dr. Doris Browne, MD, MPH, an experienced clinician and recognized advocate for increasing minority participation in all levels of clinical research.
About the Author:
Doris Browne, MD, MPH is the President and CEO, Browne and Associates, LLC, a health consulting company that manages programs addressing disease prevention, improving the health status and inequities of national and international vulnerable populations. Dr. Browne is a medical oncologist; the 118th President of the National Medical Association (NMA); Principal Investigator of the NMA W. Montague Cobb Health Institute; Chair of the Project IMPACT 2.0 (Increase Minority Participation and Awareness in Clinical Trials) Steering Committee.
“Get it done and get it done NOW”, is a current call to action to address diversity, equity and inclusion (DEI) across all disciplines – from research, academia, and government, to industry and communities. The recent wave of DEI is really a resurgence of affirmative action that was previously quelled based on arguments that it was unfair to accept quotas in education and without recognition of the 400+ years of disparities that were thrusted upon people of color. Today, we have come nearly full circle: Unjust, unequal, racist and often inequitable conditions have been documented in many reports and studies including several by the Institute of Medicine. As it has been said many times before “A change is going to come”.
Given our common human vulnerability, good health is a human right and health is a matter of equal liberty and equal citizenship. If we are to achieve health equity and live as equal members of a diverse community, then it is imperative that we create processes and policies by which all citizens are protected from the suffering that make it impossible to live as equal members of society.
Diversity has to be viewed in various contexts, such as workforce diversity, geographic diversity, and clinical diversity. From a clinical viewpoint, it is critical to achieve diverse demographic representation among healthcare providers. However, progress towards achieving this ideal of racial and ethnicity diversity among healthcare professions has been happening at a snail’s pace. Lack of progress is the result of many factors including economics, structural racism, unconscious and conscious biases as well as wanning interest in medicine.
With rapidly changing technology and the acceptance by the younger generation of societal innovation, coupled with the onset of the COVID pandemic and its impact on life as it previously existed, a new paradigm has evolved to which society must adjust. This includes changes in our health systems and how people think about their health and health services. Citizens ask more questions and want more involvement in the decision-making process. The voices of people of color, rural, urban, NexGen, and LGBTQ, among others, are shouting loudly and demanding to be heard.
The quest for diversity in clinical research also continues. The recent movement by academia, government, industry, and communities to highlight DEI recognizes that representation of all members of society is necessary to conduct effective clinical research. Furthermore, this also reflects a true commitment to justice in medicine and health equity. It will require the development of long-term solutions as part of aggressive empowerment campaigns of education and training for healthcare providers and communities as well as investments in actions to dispel the myths and distrust that communities of color associate with clinical trials research. Establishing partnerships and collaborations as well as economic investing in workforce programs will also be needed. Leadership of such efforts should be directed by those recognize as trusted community voices. Because insufficient progress has been made to date, now is the time to seize this significant opportunity to increase diversity at all levels, especially in clinical trials, to improve the quality of data supporting marketing the use of medicines and devices in a truly diverse American marketplace.
One important task driven by the desire to increase interest and participation of diverse physicians in clinical research, is the development of improved methods to identify potential clinical investigators of color and enhance the pipeline of clinical research specialists. One notable strategy is focused on creating a tool to document and track physicians of color who have expressed interest and/or are experienced in conducting clinical trials. Such databases can serve as a clinical investigator recruitment tool for academic institutions, pharmaceutical companies, CROs and government entities in need of investigators for available research projects.
It is well known from prior research that heterogeneity in professional groups boosts the quality of decision-making and will improve outcomes, especially in healthcare. Likewise, diverse representation of society members is necessary to conduct effective clinical trials. Such diversity will also reflect the commitment of participating organizations to justice in medicine and health equity.
Scientific and medical communities should explore alteration of the usual approaches to increasing diversity in clinical research, for example, by improving responses to patient experiences and increasing diverse provider participation at all levels of clinical trials development and implementation. It will require moving beyond the usual silos of academia, professional, clinical and community groups to establish a collaborative force to address all components of the social and political determinants of health.
It is important that individuals, singularly and collectively, work together with providers to increase in diversity in clinical research if we are to drive change and attain true health equity, recognizing that this is only one part of the process to bring about equity in healthcare.
I am reminded of a poem by Seamus Heaney, Nobel Prize winner in Literature, “The Cure at Troy” paraphrased below that leads me to reflect on aspirations of change and hope for a more equitable future in clinical research:
“History says, don’t hope
On this side of the grave.
But then, once in a lifetime
The longed-for tidal wave
Of justice can rise up,
And hope and history rhyme.
So hope for a great sea-change
On the far side of revenge.
Believe that further shore
Is reachable from here.
Believe in miracle
And cures and healing wells.
If there’s fire on the mountain
Or lightning and storm
And a god speaks from the sky
That means someone is hearing
The outcry and the birth-cry
Of new life at its term.”
Health equity in clinical research and clinical trials will occur when we can hear the outcry for change. Patients and research participants are asking questions and demanding answers while healthcare providers are eager to enroll diverse participants (their constituents, clients, consumers, patients) in research studies, not to just meet enrollment targets, but to answer the question of what is the best product, drug, or device to fit the needs of specific individuals, groups, or communities. The current wave of change will improve the outcome of healthcare for diverse people and recognizes that each facet of genetic sameness and differences makes us unique.
Doris Browne, MD, MPH
President and CEO
Browne and Associates LLC
118th President, National Medical Association