Science & Patient Advocacy (Minor)
Director:
Barbara Calhoun, MSN, RN, PNP
Faculty Steering Committee:
Crislyn D’Souza-Schorey, PhD
Rebecca Wingert, PhD
Xin Lu, PhD
Kasturi Haldar, PhD
The mission of the Interdisciplinary Minor in Science and Patient Advocacy is to provide undergraduate students with critical skills and understanding of the multifaceted challenges needed to advocate effectively for rare disease patients. The core of patient advocacy is to know disease at the molecular, genetic and clinical levels and use that information to help patients find treatments. This minor in Science and Patient Advocacy provides an integrated framework that will provide students with needed skills to become effective patient opinion leaders who have enormous influences in health outcomes at all levels in our society.
This adjunctive patient advocacy minor provides needed skills to collaborate with stakeholders such as researchers, clinicians, regulators, pharmaceutical companies and patients to bridge the gaps in knowledge exchange and positive health outcomes. It also provides scientific training in advanced knowledge of current and emerging technologies in research and clinical medicine relevant to rare diseases with the goal of providing trainees the scientific proficiency needed to be effective patient advocates of rare disease.
This minor is an extension of the basic science requirements for health professions and science related majors in Biological Sciences and from departments within the College of Science. This interdisciplinary program enhances the mission of Notre Dame to provide students with effective patient advocacy skills to facilitate resolution of the social, economic, and medical issues faced by patients with rare diseases.
To enroll or discuss an interest in the program, please schedule a consultation schedule a consultation with the minor’s program manager, Katrina Conrad kconrad2@nd.edu.
The minor requires fifteen credit hours of academic work described as follows.
The primary course required for this minor is Introduction to Science and Patient Advocacy (BIOS 40450). This is a three-credit course offered in the spring; required of all students enrolled in the minor. A major goal of this course is to have students develop skills to study the natural history of rare diseases through review of patient de-identified medical records. The course is designed to integrate the scientific basis of clinical research with patient centered components of advocacy.
The secondary course for this minor is Topics in Personalized Medicine BIOS 40550/60550 . Required of all students in the minor and offered in the fall semesters. This course introduces current and emerging technologies in scientific research with a specific focus on concepts relevant to precision-based individualized medicine. The overall format for this class will be a detailed discussion of highlighted journal articles relevant to the topic discussed. This class will meet once weekly and will be open to both juniors and seniors enrolled in the minor program. The class will also include graduate students interested in advanced topics of research. Having a class composition of both undergraduate and graduate students is a particular strength of this course, as it maintains a standard of rigor typical of an advanced level class.
Rare Disease Advocacy Immersion (BIOS 40451) is the community based course required for the minor. Designed to immerse students in real advocacy based projects in partnership with patient service organizations. The goal is to partner with different patient organizations each semester to broaden our reach and expand partnerships. Students actively engage in real-life patient advocacy experiences unique to this minor program.
Topics in Rare Disease Advocacy and Policy (BIOS 40565) is the capstone course for the minor and offered in the spring semesters. It is designed as the culminating course to integrate the scientific basis of clinical research with patient centered components of advocacy. Direct partnerships with patients/families is key to understanding the challenges faced by those living with rare diseases. Topical modules include health equity in rare, bioethics, legislative, regulatory affairs and policy issues in rare diseases.
Electives (6 credits total). Two courses are required from the list of approved electives in the areas of biology, neuroscience, psychology, ethics, and policy/social justice in medicine. The elective courses in the list below are regularly offered.
| Code | Title | Hours |
|---|---|---|
| Requirements Summary | ||
| BIOS 40450 | Introduction to Science and Patient Advocacy | 3 |
| BIOS 40550 | Topics in Pathobiology: Personalized medicine | 2 |
| BIOS 40451 | Rare Disease Advocacy Immersion | 1 |
| BIOS 40565 | Topics in Rare Disease Advocacy and Policy | 3 |
| Electives | 6 | |
| Introduction to Clinical Ethics | ||
| Embryology | ||
| Medical Molecular Genetics | ||
| Introduction to Molecular and Medical Pharmacology | ||
| Immunology | ||
| Neuroinfectious Diseases | ||
| Cell Biology | ||
| Medical Microbiology | ||
| Compassionate Care in Medicine | ||
| Human Gross Anatomy | ||
| Vertebrate (Human) Physiology | ||
| Hallmarks of Cancer & Therapy | ||
| Molecular Epidemiology of Infectious Diseases | ||
| Advanced Neurobiology | ||
| Developmental Neuroscience: Experience Dependent Plasticity | ||
| Neurobiology of Pain | ||
| Cancer Immunotherapy | ||
| Principles of Biochemistry | ||
| Fundamentals of Genetics | ||
| Medical Counseling Skills and Patient-Centered Medicine | ||
| Abled in A Disabled World, Creating Inclusive Communities | ||
| Total Hours | 15 | |
To enroll or discuss an interest in the program, please schedule a consultation schedule a consultation with the minor’s program manager, Katrina Conrad kconrad2@nd.edu.