Overview
Every human being is entitled to universal rights of liberty and equality according to the Universal Declaration of Human Rights. However, prejudice and perceived disabilities amongst gender, ethnicity, and socioeconomic status have limited access to these rights, particularly in STEM opportunities (Judd & McKinnon, 2019). As a team made up of individuals with diverse backgrounds, we felt a responsibility to offer STEM-based opportunities to everyone regardless of their background or identity. This year, our team is working on tackling the disparity of scientific inclusivity within our community through a variety of project initiatives (see Fig. 1):
- Communication Board
- Chef Threeheart's Cookbook
- miRNA Database
Flowchart
Communication Board
Overview
Nonverbal patients, patients who use no or limited spoken communication (Gurny, 2022), use core word boards, in which they can decipher intuitive symbols and broad terms to communicate with others effectively in various environments. A fringe word board, a type of core word board, uses specific vocabulary that allows an individual to communicate in particular scenarios (Stanborough, 2020). Lambert iGEM’s CADlock Communication Board, an add-on to the Forsyth County, Georgia core word board (see Fig. 2c), is an inclusivity initiative to create efficient communication tools about coronary artery disease (CAD) for those unable to communicate verbally. Our tool consists of symbolic diagrams corresponding to their respective terms regarding CAD, patient diagnosis, and patient inquiries (see Fig. 2d). These visuals also include diagrams associated with synthetic biology and screening tests. Through the use of representative diagrams, patients will comprehend their diagnosis and convey their needs to promote the correct steps to take for treatment (Stanborough, 2020). Additionally, the communication board will help patients with limited language to express themselves in and out of the hospital. To demonstrate the use of our communication board, we have attached a short question and response mimicking a conversation using the aforementioned boards (see Fig. 2a and Fig. 2b).
Background
Communication encourages “the establishment of a doctor-patient trust relationship, a real therapeutic alliance, with the purpose of improving the health status of the patient,” (Kamimura et al., 2020). In all doctor-patient relationships, communication establishes the foundation of care and the spread of medical information. Kamimura (2020) outlines patient and provider relationships to be one of the leading factors in the outcomes of care, especially in underserved communities or vulnerable patients. People who have intellectual disabilities often experience a lag in healthcare treatment due to a large number of patient and provider difficulties such as “lack of formal training for healthcare providers, communication deficits between providers and patients, complex and unnecessarily complicated financing systems that limit access to appropriate care, and healthcare providers that lack awareness about steps they might take to ensure that patients with IDD have access to appropriate, culturally competent care,” (Ervin et. al, 2014). This observation drives the argument that people with disabilities should, therefore, have access to material that strengthens their relationship with their provider. In the same study, Kamimura et al. (2020) examined how health literacy and continuity of care impacted the relationship between patients and their providers. In our communication board, we decided to bridge the gap between non-verbal patients and health literacy to encourage patient-provider relationships and ensure equal quality of care.
School Offerings
Lambert High School offers a scientific research program dedicated to mentoring non-verbal students to learn everyday skills in core classes. Through the program, we began creating a list of vocabulary in order to aid non-verbal students at our school communicate more effectively with their primary providers. By covering common symptoms of CAD, treatment, pain scale, various body parts, and CAD-related vocabularies, we increased the accessibility of healthcare. Specifically, we used diagrams such as the anatomy of the body and heart as well as treatments and symptoms of CAD. Therefore, the students are more likely to understand the clinical situation, the need for treatments, and specific medical procedures, describe their symptoms and feelings, and answer clinical questions.
Creation
In order to implement our effort, we contacted Mrs. Jennifer Ro, Forsyth County Schools speech pathologist; Mrs. Ann Berry, Lambert High School’s speech-language therapist; and Karen Surio, Lambert High School’s nurse. Throughout the process, we received feedback from the professionals and revised the CADlock communication board. We took inspiration from the current core word board developed by our county (see Fig. 2c), and we made modifications by adding more feeling and body-part vocabularies. Following revisions, we once again reached out to the professionals for additional feedback. After continuous meetings discussing and revising our communication board and referencing our school district’s standards in the corresponding topics, we received approval to implement the communication board into the curriculum (see Fig. 2d).
Figure 2c. Forsyth county’s current core word board.
Figure 2d. The finalized communication board used by our school’s non-verbal students
Outreach
Lambert iGEM worked to implement these initiatives long-term by integrating our communication board into the lessons of Lambert’s nonverbal students and will continue this collaboration with these students. Our inclusivity initiative this year focused on decreasing fatalities by increasing open communication between doctors and patients and maximizing the amount of accurate information available to the public. To achieve these goals, we developed the communication board and the miRNA database and hope to expand inclusivity one step towards more inclusive research, science, and the wider community.
Future Goals
In the future, we plan to extend the vocabulary of the communication board to include more specific cardiovascular diseases and symptoms. We could also rearrange the icons and symbols that will allow our core communication board to become more universal and be shared around the nation. Potentially, the communication board will be more accessible in hospital settings so doctors and patients can communicate more effectively.
Cookbook
Background
Lambert iGEM’s aim is to prioritize patients’ health and experiences, as we identified patient health to be the most impacted by our project. As our target audience of patients goes through the process of making lifestyle changes due to the diagnosis of CAD, we sought to understand their perspective by communicating with researchers and medical professionals who treat them.
While validating the benefits of the applications of CADlock in various healthcare facilities, we found compelling evidence in pre-existing studies covering the disproportionate influence of CAD on some ethnic minorities. For example, a survey by Mochari-Greenberger and Mosca concluded that Hispanics and other minority groups are often disproportionately affected by CAD (2015). Additionally, Cleveland Clinic emphasizes the same aforementioned groups, along with African Americans and Asian Americans, as of higher risk in cardiovascular disease and precursors for coronary artery disease [i.e of all minority groups, African Americans are cited to have the highest prevalence of hypertension, a precursor to CAD at 59% (2022)]. To address this issue, we created an inclusive cookbook dedicated to disseminating recipes that are heart-healthy and maintain cultural integrity.
Development
To ensure that a variety of cultures are sufficiently represented in our cookbook, we relied on a two-pronged strategy to gather recipes:
- Localized recipes from our families' cultural/ethnic backgrounds and our school’s nutrition department
- Collaborations with iGEM Teams around the world
Local Sources
Our school consists of students from various cultural backgrounds, with a 57.6% minority enrollment rate (see Fig. 3a). In collaboration with our nutrition department, we collected homemade recipes and collaborated with our school’s nutrition teacher, Mrs. Shirley Azbell, who provided heart-healthy recipes from underrepresented areas and verified the nutritional information of cookbook recipes (see Fig. 3b).
Figure 3a. Graph of Lambert High School’s Demographics displaying a 57.6% minority enrollment rate
(Georgia Department of Education, 2022).
Figure 3b. Selection of recipes from our nutrition department (Piper Allsup, a student from Mrs. Azbell’s
nutrition class)
Collaboration
Our team collaborated with several iGEM teams around the world including USP.eel, REC-Chennai, and Waterloo-iGEM to expand our collection of recipes, and aid in our goal to find localized recipes (see Fig. 4).
Chef Threeheart's Cookbook
After compiling a collection of heart-healthy inclusive foods, we created a global heart-healthy cookbook with our mascot Chef Threeheart (see Fig. 5).
Chapter Layout
To better organize our recipes, our cookbook is divided into 9 chapters, each representing a global region used to organize our recipes. The global regions are listed below:
- East Asia
- Southeast Asia
- Middle East
- South Asia
- Sub-Saharan Africa
- Europe
- Latin America
- North America (US/Canada)
- Oceania/Pacific Islands
Recipe Pages
Each recipe page includes the following (see Fig. 6):
- Background: Description of the Cultural Origin of the recipe and its characteristics
- Nutrition: Includes Calories, Sodium, Sat. Fat, Protein, Cholesterol and Carbohydrates
- Ingredients: Includes a list of ingredients and any extra materials apart from standard cooking equipment
- Country of Origin: Provides the country which the recipe originated from
- Instructions: Provides a set of concise instructions, with any preparation steps included beforehand.
- Diet Restrictions: Color key mentioning any dietary restrictions this recipe may have
View our Cookbook!
CADmiR
While we were researching miRNA Biomarkers for CAD, we found a lack of organization in miRNA research. Continued quality control is expected by labs to provide accurate testing is inaccessible to many under-resourced research centers, particularly due to a lack of equipment and expensive nature maintenance of the lab’s equipment (Fitzgibbon and Wallis, 2014). Even when access to equipment is available, there are high costs to publishing scientific research online costing on average $3500 - $4000 (Enago Academy, 2022).
Our project CADlock intends to tackle this disparity through the development of a testing kit (see Implementation) utilizing frugal hardware components such as Micro-Q (fluorometer), OpenCellX (centrifuge), and a database to provide an open-access centralized platform for sharing miRNA research specifically correlated to CAD and available to all researchers.
Development
Existing Databases
Initially, we looked at previous database designs including miRBase, which allows scientists to search for certain keywords to find the specific articles they need. Since many researchers lack the equipment and funds necessary to collect reliable miRNA data, they often utilize this database. However, miRBase is not always accurate or pertinent to the researcher’s area of interest. Kozomara, Birgaoanu, and Griffiths-Jones classify miRBase as an author submission database with “low confidence” miRNA research the low precision on a significant amount of papers brought up through the search tool, reemphasizing the need for a more organized, precise database (2019).
Although the database is available to the public, the unreliability in research relevant to specific areas of study, such as CAD, illustrates the need for a more specialized database to research correlated miRNAs. We sought to compile information regarding the correlation between certain causative miRNAs and their prevalence in relation to CAD to develop a design for CADmiR.
Creation
After communicating with Dr. Charles Searles at Emory Healthcare Hospital, we discussed the usefulness of this database as well as its feasibility. With the confirmation of the need for CADmiR we began to build this website. We designed every aspect of each webpage while including currently available information and data that we collected for CAD. To specifically combat the low precision results issues, we incorporated a manual submission system (see Fig. 7) and will be annually monitoring the search pages to test accuracy of results. Additionally, we are in the process of filing an institute-mandated internal review board (IRB) to gain access to patient data. We built the database using a preliminary website to promote user engagement and easier access to the compiled research (see Fig. 7).
Future Developments
At this point only the design of our database is available. We intend to add adjustments after continued correspondence with Dr. Charles Searles and his colleagues at Emory Hospital and additional researchers (Dr. Christian Delles at the University of Glasgow) to strengthen CADmiR and prepare for public-use in the upcoming year. Currently, we are analyzing feedback that other databases received regarding content and ease of use, and we plan to improve those specific elements in our own database. Looking back at our process of completing these three initiatives, we understood the difficulties experienced by many members of the scientific community, and through continued perseverance, we hope to diminish the gaps in accessibility to ensure an inclusive community in STEM.