Teaching Type 1 Diabetes: Creating Stakeholder Engagement in Biomedical Careers Through Undergraduate Research Curriculum

Abstract

Undergraduate students living with chronic diseases attending universities where major biomedical research takes place are critical stakeholders in these programs, yet they often remain sequestered from them. A directed research curriculum about Type 1 Diabetes (T1D) was developed to better engage undergraduate students with personal connections to the disease in a large medical university setting world renowned for its research in this area. The course had the following student learning outcomes: (1) gain knowledge of major T1D research programs; (2) exposure to careers in T1D research and clinical care; and (3) recognize bioethical issues in T1D research.

Introduction

“No matter how complicated the research or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible, and often more cost efficient as well.”

Professor Dame Sally Davis, Chief Medical Officer, Foreword in the 2009 Stanley Report

Background

The value of patient-centered approaches in clinical care as well as in health outcomes research is widely acknowledged [1–3]. The ethos of stakeholder engagement is foundational to such approaches, and there is growing evidence to suggest that this type of engagement leads to more efficient and meaningful models of care delivery and implementation science [4, 5]. Advocacy for stakeholder engagement in chronic disease management or translational science efforts is rooted in the notion that people who live with a disease hold invaluable expertise and possess unparalleled investment in the outcome of advances in the field [1–3]. However, developing a meaningful model for patient-centered approaches to laboratory or bench science is challenging as these settings are usually sequestered from locations where stakeholders frequent and are characterized by highly specialized fields of knowledge often perceived as impenetrable to outsiders.

The field of type 1 diabetes (T1D) research and clinical care represents an important frontier for increased stakeholder engagement given the number of paramount immunologic and genetic studies seeking a cure currently underway. These studies are crucial at a time when rates of diagnosis continue to rise within the USA and globally [6, 7]. A predicted workforce scarcity exists in careers associated with T1D research in natural sciences as well as clinical care [8, 9]. The rise of T1D and type 2 diabetes (T2D), coupled with the retirement of baby boomers, is producing a critical demand for endocrinologists that is expected to accelerate in the years to come. Also, despite the push for Science, Technology, Engineering, and Mathematics (STEM) programs in high schools within the USA, the number of college students opting for degrees in STEM-related fields remains low overall (< 10%), showing limited trajectories of growth in subsequent participation in graduate programs and careers in laboratory science [10, 11]. Thus, efforts to attract a new generation of T1D researchers and endocrinologists are essential to meet workforce demands.

Providing opportunities for social network support and engagement is particularly important for students with T1D. In the window of time when young adults with T1D transition to independent college living, they face many disease-specific difficulties related to maintaining optimal health and feeling integrated into the lifeworld of college, generally [12–17]. College students with T1D commonly experience diminished glycemic control as they transition away from their parents’ care and are at increased risk for struggling with depression and feelings of social isolation [16, 17]. Given the vital role of social network connections and peer support in maintaining optimal health in T1D, creating opportunities for college students with T1D to build community with other college students who also have T1D is essential.

Activity

A specific curriculum for undergraduate students with T1D was developed to address the need for increased stakeholder engagement in laboratory medicine and clinical care trajectories. The university setting where the course was developed represented the ideal location to pilot this approach since it hosts many of the preeminent research efforts in T1D today as well as the PIs leading these programs. These include the Network for Pancreatic Organ Donors with Diabetes (nPOD), The Environmental Determinants of Diabetes in the Youth (TEDDY), and the T1D-TrialNet. The setting was also ideal given its major endocrinology clinical care centers and medical school programs.

A “Directed Research Experience in Type 1 Diabetes” course was developed using a designated section of a generic delineation for supervised research hours for undergraduates in the College of Medicine (COM). The course was one component of a T1D peer-mentoring program and, as such, was part of a larger IRB-01-approved protocol following subject informed consent. Enrollment for the course was by permission of the instructor (only available to undergraduates with T1D) and offered in the Spring 2017 semester. Recruitment for the course took place by word-of-mouth and through approved flyers placed in various locations including the student disability office, the student health center, endocrinology clinic waiting areas, and at the College Diabetes Network (CDN) meeting locations. During a 5-week enrollment effort, 22 students were consented to participate in the program. Demographic characteristics of the students are presented in Table 1.

Table 1.

Demographic characteristics of students (n = 22)

Characteristic	n (%)
Mean (± SD) age	20 years ± 1.64
Gender
Male	5 (23%)
Female	17 (77%)
Diabetes control
Pump users	16 (73%)
CGM users	9 (41%)
Mean (± SD) HbA1c	8.35% ± 1.48
Race/ethnicity
Black	0 (0%)
Hispanic	2 (9%)
White	18 (82%)
Others	2 (9%)
Household income level	(5 undisclosed)
<$75,000	4 (18%)
≥75,000	13 (60%)
Parental education level	(1 undisclosed)
Less than Bachelor’s	6 (27%)
Bachelor’s or higher	15 (68%)
Year in university
Freshman	5 (23%)
Sophomore	5 (23%)
Junior	8 (36%)
Senior	4 (18%)

List of academic majors:

Animal Sciences; Anthropology; Applied Physiology and Kinesiology; Astronomy; Biochemistry; Biomedical Engineering; Dietetics; Digital Arts and Sciences; Economics; History; Health Education and Behavior; Interior Design; Microbiology; Music; Nursing; Psychology; Sociology; Tourism, Events and Recreation Management

The student learning outcomes (SLOs) for the course included (1) knowledge of major T1D research programs; (2) exposure to career trajectories in T1D research; and (3) recognition of potential bioethical issues in T1D research. The class met weekly in a location within the COM near the T1D research labs and clinical/translational research buildings. The overall structure of the course involved weekly course readings, completion of online NIH research training certificates, lectures, class discussion, visits from guest speakers, and reaction memos. The course included elements of a general undergraduate research methods course with everything framed through the lens of T1D. The main course text was The Discovery of Insulin by Michael Bliss. Additional readings were available on the course site and included PDFs of research from the major T1D research labs at the university. Readings on the recent or seminal findings reported by specific research labs were assigned prior to the class where the PI from that lab was scheduled to speak with the students. See Appendix A for the course syllabus.

The guest speakers were a centerpiece of the course and allowed students to meet the leading experts in T1D research and clinical care, hear about each PI’s specific career trajectory in research and medicine, and engage in a rich question and answer session in an intimate setting. Reaction memos gave the students a chance to write a response to the readings and speakers and actively encouraged them to take a phenomenological pedagogical approach to learning wherein their own lived experience served as a crucial starting point for the acquisition of information. Thus, students were also encouraged to talk about their experiences reading the research as someone living with T1D. What did Banting’s discovery of insulin mean to them? What was their stance on genetic screening for T1D? Above all, students were equipped to recognize both the strengths/potential and weaknesses/limits of research in T1D and to develop their own “burning questions” in T1D scientific inquiry.

Results and Discussion

Students provided course evaluations through standard (required) evaluation rubrics. Additionally, baseline and exit surveys for students were developed and administered (via REDCap®) to capture the overall experiences of students in the course specific to the details for the SLOs, providing students an in-depth venue to give feedback regarding the strengths of the course and what could be improved.

Importantly, evaluations of the course provided unanimous and resounding affirmation regarding the value of the directed research experience. Indeed, their evaluations scored in the top 5% of overall teaching evaluations on the campus for undergraduates with 100% of the students saying they would take the course again if given the chance, 100% saying they would recommend the course to another student, and 100% “strongly agreeing” that the course was valuable to their educational experience.

Seven out of the 22 students became interested in participating in the research projects they heard about during the course. All seven students were successfully placed in a range of labs in the natural and social sciences in T1D research. Moreover, while in the baseline survey students completed prior to the start of the course, only 5 students indicated they were interested in entering careers related to T1D; by the end of the course, 20 out of 22 said they were interested in entering careers related to T1D. Overall, the pilot demonstrated the feasibility of successfully recruiting students for a T1D directed research curriculum and successfully implementing it in a university setting.

The T1D directed research course was offered again; however, the subsequent course was open to any student regardless of whether or not they had T1D. The course was advertised in flyers posted throughout campus (Fig. 1) and in the undergraduate course catalog. Of the 18 additional students who took the course, 15 had T1D, 1 had a first-degree family member with T1D, and 2 had friends with T1D. Thus, even when the course was open to any student, there was a self-selection based on those with knowledge of the disease. The intentional development of undergraduate research experiences for college students with T1D represents a feasible way to increase stakeholder engagement in laboratory medicine and endocrinology medical career trajectories. The approach applied herein fits seamlessly into the lifeworld of college curriculum and provides meaningful research exposure for students. Moreover, this approach increases social networks for students with T1D during transition into early adulthood where they are at risk for negative health outcomes. We posit that in research labs and medical colleges, faculty and students reciprocally benefit from this type of stakeholder engagement and this type of course could be replicated to other disease models.

Fig. 1.

Course Recruitment Flyer

Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee (University of Florida Gainesville Health Science Center Institutional Review Board (IRB-01); IRB00000335) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.