Blue and White Eggs
By: 
Sumera Subzwari

I chose to focus on a project that facilitated the awareness and advocacy for more inclusive biomedical research at the community level, although this project’s impact could potentially influence the state and national levels as well. I believe this is a vital theme to focus on as I’d like to explain how biomedical research, particularly for precision medicine, has to be changed in order to broaden its relevance and benefits for a variety of different people and communities. By choosing the form of a graphic novel, this allows me to portray my message in an easily understandable manner and gives laypeople the ability to empathize by hearing what the characters’ experiences are. Additionally, I strongly believe that visual imagery is able to make a bigger impact and is more memorable than simple text.

The reader will notice the fact that the characters that are in the waiting room are from a variety of different racial, ethnic, and religious backgrounds. This was done intentionally to show how this study’s recruitment process was conducted differently in a way that allowed these underrepresented populations to have a seat in the clinical trial. As each character describes their circumstances that would traditionally hinder such groups to participate in clinical trials - whether it be poor transportation access, childcare and/or working hour concerns, lack of translation services, cultural values, or knowledge of past discrimination through clinical trials - they then describe what the researchers in this particular study did differently that enabled them to be able to participate. It’s important to note that there certainly are still things that the researchers in the story can improve on. For one, although the papers were provided in Spanish for Julio, he still needed a live-translator (in this case, Cecilio, who was not a certified translator) to understand medical terminology that he was not familiar with. The purpose of this is to show researchers who read the novel an easy step to first implement, and then understand what they can further do to overcome the language barrier. I would also like to acknowledge that there are many other populations and obstacles that hinder said people from being able to participate in clinical trials that were not included, although the sole intention behind this was to keep the novel brief. Such obstacles include insurance, the stigma around sexual orientation, housing situations, among others.

This project is directed toward biomedical researchers in the hopes of providing them with ideas to successfully include underrepresented minorities in their research. It is understandable that they may not able to employ these immediately, but the goal is to encourage them to think about these and slowly begin to implement them. In this way, we can motivate researchers to include these communities so their research is more inclusive and that their results are actually applicable to large swaths of populations in the United States.

Citations:

Transportation for all: Good for families, communities and the economy. Issue Brief Series, Policy Link. Marguerite Casey Foundation [cited 2018 Dec 2]. Available from https://issuu.com/policylink/docs/transportationfor-all-final-05-10-
Eibelman, J. Language Barrier Means Millions Of Elderly — Like My Grandmother — Lack Access To Alzheimer's Trials. WBUR [Internet]. 2018 Oct 12 - [cited 2018 Dec 2]. Available from http://www.wbur.org/commonhealth/2018/10/12/language-barrier-alzheimers-disease-trials
Dharma EC, Mari-Lynn D, Lorie HE, Passche-Orlow MK. How to Achieve Informed Consent for Research from Spanish-Speaking Individuals with Low Literacy: A Qualitative Report. Journal of Health Communication [Internet]. 2010 [cited 2018 Dec 2]; 15:sup2, 172-182. doi: 10.1080/10810730.2010.499990. Available from: https://www.tandfonline.com/doi/full/10.1080/10810730.2010.499990
Hoffman A. Millions of Americans Are Getting Lost in Translation During Hospital Visits. Smithsonian.com [Online]. 2015 Sep 28 [cited 2018 Dec 2]. Available from: https://www.smithsonianmag.com/innovation/millions-americans-are-getting-lost-translation-during-hospital-visits-180956760/
Explore Health Inequity: Food Security [Internet]. California Newsreel: Unnatural Causes; 2008 [cited 2018 Dec 2]. National Association of County & City Health Officials; [about 2 screens]. Available from: https://unnaturalcauses.org/resources.php?topic_id=4
About Rural Health Care [Internet]. About NRHA; 2018 [cited 2018 Dec 2]. National Rural Health Association; [about 3 screens]. Available from: https://www.ruralhealthweb.org/about-nrha/about-rural-health-care
Meropol NJ. Overcoming cost barriers to clinical trial participation. Nature Reviews Clinical Oncology 2016 May 20;13(6): p. 333-334.
Galsky MD et al. Geographic accessibility to clinical trials for advanced cancer in the United States. JAMA Internal Medicine 2015 February;175(2):293-295.
Jones JH. The Tuskegee Syphilis Experiment. In Wolfgang Uwe Eckart (ed.), Man, Medicine, and the State: The Human Body As an Object of Government Sponsored Medical Research in the 20th Century. Steiner. pp. 86--96 (2006).
Wilkins CH, Adams S, Boyer AP, Joosten YA, Hull P, Walston KA. Developing a measure of trust that includes dimensions more common among racial and ethnic minorities. Taking an Implementation Science Approach to Genomic Medicine; 2015 Nov 19. Washington DC, USA.
Goering S et al. Transforming genetic research practices with marginalized communities: A case for responsive justice. Hastings Center Report 2008 Mar-Apr;38(2):43-53.
Williams D, Mullan F. Why we need more black doctors. STAT News. 2017 Jan 16. Available from: https://www.statnews.com/2017/01/16/black-doctors-shortage-education/
Quinn SC et al., Building trust for engagement of minorities in human subject research: Is the glass half full, half empty, or the wrong size? Am J Public Health 2013 Dec;103(12):2119-2121.