Patient Interviews

 

In SCRB 167, students learn about patients’ experience of stem cell-related diseases and therapies through visits from patients and their caregivers.

Goal/s:

• Provide students with an empathetic understanding of patients’ experience of  their disease and medical interventions, to complement knowledge of the biological and chemical elements of the condition and its treatment.
• Motivate students to see the importance of clinical study and practice. 

Class: Stem Cell and Regenerative Biology 167: Stem Cells and Regeneration in the Pathology and Treatment of Disease

Introduction/Background:

In this course, students learn about the role of stem cells in human disease and therapies through lectures from practitioners and visits from patients and their caregivers. In the first hour, a faculty member with subject matter expertise lectures on the topic. In the second half hour to hour, the faculty member interviews a patient or family member visitor, who provides a first-hand account of the condition and answers questions. In discussion section following class, students present and discuss published research on the topic. Students report that the patient interview portion of the course is particularly inspirational and provides a unique perspective on what otherwise might seem a dry subject.

The course is taught by a professor who currently oversees a clinical practice. This allows the professor to bring in patients that he knows personally. For some subjects, the professor brings in other faculty who conduct research and perform clinical work on the topic, who identify a patient of their own to speak.

Procedure: 
Selecting Speakers

• The professor identifies patients who could speak on the subject each week. Not all patients make good speakers; they need to be able to articulate a compelling story of their condition. After a few offerings of the course, particularly effective patient speakers may come back year after year. Unfortunately, given the nature of the subject, some patients are not able to return because they have passed on or become too ill to continue.
• The instructor finds partner faculty who  1) conduct research in the field and 2) perform clinical work related to the disease. These faculty then identify a patient in their clinic to speak. Thus, it is helpful for the head instructors have relationships with other physicians who have subject matter expertise, relationships with patients, and a good sense of who would be a good patient speaker.
• Instructor speaks to patients in advance to tell them what the class will be like, where possible. When patients do not have a clear understanding of what the class is about, the experience can be overwhelming or they may be less prepared to answer questions effectively.

Preparation for Patient Visits

• On first day of course, instructor teaches students about the Health Insurance Portability and Accountability Act (HIPAA) and necessity of discretion when discussing the class and protecting patients’ privacy.

During Class

• The course instructor or guest professor lectures on the topic (e.g. bone marrow failure, diabetes, lung disease).
• The faculty member’s discussion with the patient is structured similarly to how a physician would conduct a clinical interview. The instructor prepares questions in advance in order to draw out the most important parts of the patients’ experiences. They might include:

1)     What is the patients’ “chief complaint” (their condition)?
2)     What is the history of the complaint? The patient will walk the class through the story of their diagnosis, and often their misdiagnoses along the way. They also may discuss family and social factors that illustrate some of the genetic and environmental roots of the disease.
3)     How does the condition affect their lives?
4)     What is the action plan and treatment? Patients describe their experiences with the treatment they receive, including interactions with practitioners and effects of medication

• Students are then able to ask questions of the patient.
• Instructors may need to redirect the discussion with patients to ensure that there is enough time for all important topics. For instance, sometimes the case history may take up much of the discussion, leaving little time for patients’ current experience with the disease.

Comments: 

• It is helpful if the undergraduate college is associated with a medical school, as it might be difficult to find patients otherwise. 
• Small class size is important to quality. The course currently enrolls 30-40 individuals. An even smaller number (14-15) may be preferable.

Materials/Resources:

• Syllabus, attached.

Submitted by Dr. George Daley, Course Director, Harvard Medical School, Boston Children’s Hospital, and Howard Hughes Medical Institute
& Dr. M. William Lensch, Former Head Instructor/Teaching Assistant, Boston Children’s Hospital, Harvard Medical School, and Harvard Department of Stem Cell and Regenerative Biology