When we talk about a model of representation, research is a key component. If we're ignoring entire categories of people when we decide how to care for people, that doesn't make scientific sense.
Which is why More in Common Alliance leaders are working to ensure that the diverse community sees themselves in the research. We want to grow awareness toward education, engagement, and representation opportunities. From there, we want to grow advocacy, and input to development of trials. Once a formerly isolated group becomes engaged and understands what the issues are, they become advocates and partners in increasing diversity in those studies.
For prostate cancer, there is an almost three-fold higher incidence in mortality between Black and white men. The US Preventative Task Force, which makes recommendations for screenings and trials, decided in 2010 that we were over-screening for prostate cancer. They gave the prostate specific antigen (PSA) test a “D” rating, which changed the prostate screening landscape. But the data used to support that rating came mainly from white men — not the Black men with much higher incidence of mortality. Clinical recommendations, made based on incomplete data, impacted everybody. Nearly 15 years later, there is a major increase in the number of Black men who have late-stage prostate cancer, because they were not screened.
The way to turn that around is to ramp up the outreach, increase screenings, and change the recommendations based on more complete facts. Our challenge is to collect data on African American men to support more representative recommendations, which is supported through a more diverse provider population, by more diversity at the decision-making table, and an understanding that having diverse communities engaged in the research yields more valid data.
Another situation in which greater diversity shows enormous potential benefit is precision medicine. For an increasing range of diseases, clinicians can make better, more efficient treatment decisions based on patient genetic information. But all communities are not benefiting from precision medicine products because the knowledge base on which these drugs are created was biased and did not include representative African American and Hispanic participation.
So we see that health equity in research isn’t just about screening and incidence rates. It also impacts treatment when we don't have all the people reflected in the data. The opportunity to make an impact with precision medicine, which will continue to change the landscape for healthcare, is going to have limited benefit across different populations.
These gaps in research are a critical area in which partnerships such as the More in Common Alliance can change the longitudinal course of public health. We have a unique opportunity to convene diverse investigators from both academic and acute care realms to delve scientifically into causes and treatments for these health disparities. We will have grassroots efforts in play to get those communities excited about participation, with clinicians and researchers who look like them and who have the same sensitivities as they do. This partnership will allow for the removal of some of these historical barriers in certain communities.
Can you provide connections to resources that support making the More in Common Alliance a national model of addressing health equity? Join our mailing list to stay informed and help spread the word.
Our team is also available to make specialized presentations to community stakeholders, foundations, and other thought leaders who might contribute their ideas to the model.
And of course, financial and in-kind resources are a key need in making such as widespread system change. Contact our community outreach department to find out about needs in a subject or geographic area that’s meaningful to you.