Inspiring Innovation to Increase Clinical Trial Participation: #ideas4patients from a Patient

Jameisha “Meisha” Brown
Managing Chief Equipping Officer (CEO) of T3 Health & Wellness, PhD Student
August 31, 2016

Being diagnosed with Stage 3b Burkitt Lymphoma, one of the fastest growing tumors, I was torn between an early threat of a death sentence at only 8 years old and the will to live. My faith helped me to be brave and courageous. An opportunity to participate in a trial provided a beam of hope and gave me a fighting chance, when the state of affairs seemed quite hopeless. In addition to numerous surgeries, one of the most beneficial regimens I received during treatment included rituximab, cyclophosphamide, hydroxyldaunorubicin, oncovin and prednisone (R-CHOP protocol). With the help of my parents and phenomenal healthcare team, I learned to live in harmony with discomfort. The side-effects of treatment were often brutal including hair loss, abdominal pain and chronic constipation, drenching night sweats, excessive vomiting, lack of appetite and tiredness. These side-effects were modified with the help of blood transfusions, gastrostomy tube feedings, and steroids among other maintenance strategies. Many of these symptoms remain long-term side-effects of such intense treatment. Roughly 6 years after I endured the clinical protocol and achieved remission, R-CHOP was approved by the Federal Drug Administration in 2006 as the first line of treatment for many lymphomas. I am fortunate to have contributed to this medical milestone.

Clinical trials have produced monumental advances in prevention, treatment and improved health outcomes for many diseases, including cancer. Recognizing the ever-increasing need of participation in clinical research gave birth to INC Research and non-profit Center for Information and Study on Clinical Research Participation’s (CISCRP) novel venture the “Inspiring Hope Ideathon”, an exclusive crowd-solving opportunity in the research industry. As a cancer “thriver”-- long-time beneficiary of clinical research and an emerging scientist, I am elated to deliver the keynote that will hopefully inspire researchers, advocates and improved science policy and altruism in potential patients. I am confident that my message will contribute to the disintegration of the walls that lie and bound the research community and potential patients for generations to come. The future of medical and biobehavioral research demands a multilevel approach to combatting barriers to participation that will ultimately lead to the prompt realization of more medical and public health achievements that are beneficial to all.

As an emerging scientist, one of my key research interests is racial/ethnic minority participation in clinical research. Racial/ethnic minorities, the uninsured, poor and individuals living in rural communities, experience an excess burden of preventable diseases and widespread health disparities (Baquet, Mishra, Commiskey, & Khanna, 2006). Additionally, these populations have lower participation rates in clinical research including therapeutic clinical trials (National Cancer Institute, 2016). Low participation rates from medically underserved communities may contribute to increasingly wider disparities for many illnesses, including cancer and markedly lower survival rates when compared to their white counterparts (Baquet, Henderson, Commiskey, & Morrow, 2008; Chen, Lara, Dang, Paterniti & Kelly, 2014). Without adequate diversity in participation, it may be difficult to generalize trial outcomes because you will not know whether new therapies or preventive interventions have comparable effects among patients from diverse racial/ethnic groups (Zullig, Fortune-Britt, Rao, Tyree, Godley & Carpenter, 2016).

The insufficient representation of racial/ethnic minorities and many other traditionally underrepresented populations in clinical research has provoked recent national efforts to address participation. Understanding that the impact of barriers to participation differ for each population is central to reducing diversity issues and its implications of disparities in clinical research. High impact opportunities lie in adequately addressing the barriers to participation in clinical research. You will hear hopeful and helpful #ideas4patients to increase clinical trial participation from a diverse audience of stakeholders at the “Inspiring Hope Ideathon” on September 27-28, 2016 at the District Hall in Boston.

References
Baquet, C.R., Mishra, S.I., Commiskey, P., & Khanna, N. (2006). A strategy for improving health and reducing health disparities. The Maryland Family Doctor, Winter, 9-13.
Baquet, C.R., Henderson, K., Commiskey, P., & Morrow, J.N. (2008). Clinical trials-The art of enrollment. Seminars in Oncology Nursing, 24(4), 262-269. doi:10.1016/j.soncn.2008.08.006
Chen, Jr., M.S., Lara, P.N., Dang, J., H.T., Paterniti, D.A., & Kelly, K. (2014). Twenty years post-NIH Revitalization Act: Enhancing minority participation in clinical trials (EMPaCT): Laying the groundwork for improving minority clinical trial accrual. Cancer, 120(S7), 1091-1096. doi:10.1002/cncr.28575
National Cancer Institute. (2016). Cancer Health Disparities. Retrieved from http://www.cancer.gov/research/areas/disparities#challenges
Zullig, L.L., Fortune-Britt, A.G., Rao, S., Tyree, S.D., Godley, P.A., & Carpenter, W.R. (2016). Enrollment and racial disparities in cancer treatment clinical trials in North Carolina. North Carolina Medical Journal, 77(1), 52-58. doi:10.18043/ncm.77.1.52

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