Allison Kalloo, MPH
One of the most significant and persistent challenges to improving health is low participation in medical research. This crisis is more pronounced in the African-American and Latino communities and has major consequences in our efforts to advance our grasp of disease, address disparities in health and develop new therapies.
Research in the controlled environment of a lab can only advance science so far. At some point, novel medical concepts need to be translated to human beings and tested in the real world. This requires that volunteers (either healthy people, or individuals with the disease or condition being studied) step up to the plate and agree to participate in medical research.
These medical studies, commonly referred to as clinical research. can take many forms, such as evaluating the safety of a new drug, comparing which of two existing treatments is more effective, or examining the connection between health behaviors (e.g. diet and exercise) and certain diseases. These studies are now more carefully designed, regulated, monitored, and reported than ever before to prevent abuse and unnecessary risk, and to preserve patient rights and safety--to ensure that 'Tuskegee' never happens again.
What hampers our ability to develop new therapies to treat diseases more broadly and specifically is the underrepresentation of population groups. We know that disease prevalence varies by population group. For example, African Americans have higher rates of heart disease, diabetes, hypertension and asthma than Caucasians, and Blacks race has the highest mortality rate for all cancers combined.
There is an urgent need to develop new therapeutic approaches for diseases that disproportionately impact African Americans, Latinos and other population groups, and there is a growing body of evidence that suggests that individuals with different racial and ethnic backgrounds may respond differently to certain treatments. But the critical answers will remain elusive if these minorities dont participate in the process of scientific discovery.
Over the long run, Clinical Ambassador will be engaged in a dialogue with the community about increasing the participation of minorities in clinical research. Dynamic focus groups, surveys and interviews and special events are planned to better understand community perceptions regarding medical research, their health and life concerns, and the issues that may prevent individuals from participating.
Studies have found that race, education, socio-economic circumstances, and distrust each play a role in people's interest and ability to volunteer as a participant. But perceptions can be changed when people are presented with better informationculturally competent, transparent and abundant. Other logistical barriers to participation, such as transportation and childcare, can also be surmounted with the right communication. Using this catalyst, Clinical Ambassador has developed dynamic interface with minority communities that helps potential volunteers understand the importance and basics of clinical trials, learn how to participate in research, weigh-in on the development of marketing campaigns. We also offer access to a database of studies that are currently enrolling volunteers, in addition to finding answers to questions about safety, time commitment and compensation.
Our community outreach and public awareness initiatives are two elements of a multi-faceted approach to improve health research participation that includes efforts to build partnerships with community organizations and a network of community physicians. Improving health is a collaborative responsibility, and with this effort, we hope to stimulate a community dialogue about the value of research in improving the health of our community.
Kalloo is the founder of Clinical Ambassador and a graduate of both Yale School of Public Health and North Carolina Central University in Durham. She is a minority, and has personally participated in close to a dozen clinical trials.