Research-Based Health Care Advocacy
Instructor:
Paul Jung, M.D.
I.
Course Goals
Background:
The United States is plagued by a plethora of health problems, ranging from
the effects of tobacco use to violence to environmental contamination to lack
of access to medical care for large numbers of Americans, particularly the
poor and members of minority groups. It
is the premise of this course that the collection and presentation of
relatively simple data in a form understandable to policymakers can have a
significant impact upon health policy in this country.
Research-based health activism can shape health care delivery and
policy. By generating meaningful
data that can be disseminated to the general public, the press, and government
officials, health activism can address a wide range of health issues.
In addition, research-based health activism can be conducted
effectively by members of the general population or by trained professionals. Although health care professionals are often afforded greater
authority in the advocacy arena, trained community members and students, both
graduate and undergraduate, have also been successful in utilizing research
results in improving their communities.
An example of the former is El Puente (“The Bridge”), a community
learning and development institution in North Brooklyn, New York City, which
has taught youths and adults how to use data to improve their communities.
An El Puente survey during the 1991 measles epidemic resulted in a
community vaccination program that served as a model for city and statewide
vaccination programs. In Orange County, California, local advocacy efforts to
improve access to health care for the medically indigent were carried out by a
task force of individuals with a wide variety of backgrounds and expertise. Faculty physicians and students at the University of
California, Irvine Medical Center, county employees, church members, and
members of social service organizations such as the Legal Aid Society
conducted a survey to determine the severity of medical problems in Orange
County, the financial barriers to health care for its residents, and the need
for additional county-funded prenatal care.
Through these research-based efforts, as well as political and legal
strategies, the group accomplished modest improvements in health care access
by obtaining additional funding for prenatal care and forcing less restrictive
eligibility requirements.
A number of academics have advocated research that falls under the
rubric of research-based health activism.
In a recent Academic Medicine article, Peabody explained that medical
schools would better serve the public if they encouraged research on
socially-oriented policy. Rothman argued that a curriculum that teaches advocacy skills
along with diagnostic skills could help rebuild medical professionalism.
White encouraged medical schools to become involved in health care
research to lift the standard of health care and respond to the contemporary
public and political emphasis on cost control.
Recognizing such benefits, some academic institutions are pioneering
research-based health activist courses. Such
courses have been taught at the University of Michigan, and at Johns Hopkins
University, and one continues at Case Western Reserve University.
I propose a similar course at the University of Maryland at College
Park during Winter Term 2002.
Proposal:
This course will be an intensive three-week, hands-on, experiential course in
research-based advocacy. During
the fall semester, those students in the HONR 269D “Health Policy” course
who wish to participate in the winter session will develop a brief outline of
a research question and proposal. The
winter term will begin with a few seminars on the basics of research (types of
studies, bias, data analysis, etc.). Then
students will complete a formal research proposal to investigate their
question of interest. Several
sessions will be spent learning the basics of research.
Full written research protocols will undergo several revisions before
being finalized. The remainder of
the winter term will be spent critiquing each others’ protocols.
We will intertwine skill-building sessions with guest speaker sessions.
Skill-building sessions will specifically address a research
methodology topic, whereas guest speaker sessions will provide real-world
examples of research-based activism to encourage and inspire the students.
The key to this course is the hands-on work that each student will put
into their research protocol. If
preparation and planning are the keys to success, this course will give
students the experience of planning a well-prepared research project.
Although many students who decide to pursue research in the future may
learn these skills during the course of their work, no formal course is
available to offer students this type of experiential training early in their
education.
Objectives:
At the end of the Winter Term course, students will have completed a full,
5-page written research protocol, which can easily serve as the cornerstone
for a research project. By
formulating their protocol, students will understand the basics of formulating
a research question and designing a research project.
They will also be able to critically assess published research in the
medical and health policy literature. Students
will also become familiar with the basic fundamentals of epidemiology and
biostatics.
Most importantly, students will not only be able to conceptualize a
research project, but they will be able to put it in writing, clearly and
concisely, so that others may understand the project.
Students will be encouraged to utilize time in subsequent semesters to
carry out the research under faculty supervision.
This research can become the student’s honors thesis and/or the basis
of further work in subsequent semesters.
Students:
The class will be composed mainly of University Honors Program students from
various disciplines who are interested in health care.
They need not be pre-medical students or students in biomedical
disciplines. Student who have
successfully completed HONR 269D will be given preference.
Students who are not part of the Honors Program will be welcome with
approval from the course instructor. The
course will ideally enroll from five to ten students, with a maximum of 15.
II.
Course Syllabus
Class
will meet each day from 12pm – 3pm.
Thursday, Jan 3, 2002: Orientation & Inspiration
Readings:
Hulley chapters 1 & 2
Guest Speaker: Sid Wolfe, MD
1st Half:
Orientation
Goals:
Review class goals and format, and begin discussion of possible research
topics.
In-Class Assignment:
This
will be a nuts & bolts intro to the class and what we hope the students
will achieve. Each student will
be asked to choose an area that interests them, to provide a general idea of
where their research protocol will lead.
Students will be asked to write a short paragraph about their research
topic, specifically their research question.
This will get students to commit to paper their ideas and begin honing
their specific project into a well-defined project.
It will also help us determine the general interests of each student,
and if there are several that have overlapping interests, we may encourage
group work. We will engage in a
discussion about proposed topic areas to stimulate ideas for research
questions.
2nd Half: Inspiration
Goals:
Inspire students to become active and involved in the class and provide a
direct example of research-based health care advocacy.
In-Class Assignment: We
will have a presentation by Sid Wolfe, MD, who, as Director of Public Citizen’s
Health Research Group, is responsible for the withdrawal of several drugs and
medical devices determined to cause more harm than good.
This talk will give students an idea of what exactly certain types of
research in health care can do for the public’s good.
Homework: Students will think about their topics and try to develop a solid
research question.
Friday, Jan 4: Skills Session 1 = Study Design & Literature Review
1st Half: Basic study designs.
Readings:
Hulley
chapters 7, 8, & 11
Goals:
Understand case-control, cohort, and randomized trials.
In-Class Assignment: Students will be given a didactic lecture on the basic types
of study designs, i.e., case-control, and randomized trials.
2nd Half: Literature Review
Goals:
Learn how to perform a basic literature search to find background information
for a selected topic area.
In-Class
Assignment: We will go to the undergraduate library (Hornbake) and have a
demonstration by library staff on the basics of on-line literature review.
Students will learn the basics of running a literature search for
previous research in their topic area.
Homework: Students will be asked to refine their question over the weekend and
develop a draft of their full research protocol including a relevant
bibliography. Drafts (including a
completed background literature section) will be presented in writing at the
next session.
Monday,
Jan 7: Project Review 1 (*First Drafts Due*)
Goal:
Review students’ proposals.
In-Class
Assignment:
Each student (or group or students) will present their ideas for their
protocol, and then get feedback from the other students and instructors.
We will go through each student’s proposal and critique the research
idea as well as the methods. This
will be a highly interactive session where a topic is presented and students
will be expected to identify a particular well-phrased research question,
suggested methodology for answering the question.
Possible topics include drug costs and pricing, resident work hours.
The discussion in this session will show the students exactly how a
research question can be refined, and this skill will be applied to each
student’s research question with other students acting as “reviewers.”
Through this discussion, students will be able to answer the question,
“What is a protocol?” and better understand the nature of their goal for
the course.
Homework:
Students will revise their protocols based on today’s discussion.
Revised protocols will be submitted at the next session.
Tuesday, Jan 8: Skills Session 2 = Questionnaire
Design (**Questionnaires Due**)
Readings:
Hulley
Chapter 5
Goal:
To learn
about questionnaire design and survey issues.
In-Class
Assignment: Students
will have a didactic session on questionnaire design & evaluation.
Afterwards, we will critique sample questionnaires from published
studies. Then, those students (or
groups) who plan to incorporate questionnaires or surveys into their research
protocol will submit copies of the actual survey instrument and class members
will critique each questionnaire.
Homework:
Students will incorporate the skills learned in this session into their
written protocol and questionnaires.
Wednesday, Jan 9:
Skills Session 3 = Causal Inference
Readings:
Hulley
Chapter 10
Goal:
Understand causal inference when designing a research study and interpreting
data.
In-Class
Assignment:
Each student (or group of students) will present their ideas for their
protocol, and then get feedback from the other students and instructors.
We will go through each student’s outline and critique the research
idea as well as the methods. This
will set the stage for further review and refinement.
Homework:
Students will incorporate the critiques of their outlines into the first
drafts of their full protocols. First
drafts will be submitted in writing by the Thursday, Jan 10th
session. If a protocol involves a
survey, survey instruments will also be submitted with the protocol.
Thursday, Jan 10: Sample Size, Basic Biostatistics, and Ethics
1st Half:
Sample Size and Power
Readings:
Hulley
chapters 4, 12, 13 and 15
Goal:
To understand the basics in determining how a sample is selected and
studied, and how sample size affects study results.
Students will also learn how basic statistical methods are utilized for
data analysis.
In-Class
Assignment: We will review basic biostatistics (t-test, z-test, etc.) and
complete exercises to enhance understanding and familiarity with these
statistical tests. We will then
discuss which tests may be most appropriate for various students’ research
ideas.
2nd Half: Ethics of Research
Readings:
Hulley chapter 14
Goal:
Students will discuss the ethical considerations in conducting research
(e.g., consent of participants, confidentiality, etc.).
In-Class Assignment:
We will discuss several case-studies of clinical trials with ethical dilemmas.
Homework: Students will incorporate the issues discussed in today’s lecture
into their research protocols.
Friday,
Jan 11: Guest Speaker and Project Review
Speaker:
Peter
Lurie, MD, MPH
Goal:
Re-energize the students by giving a concrete example of research-based
activism, and provide a critique of research protocol ideas in-progress.
In-Class
Assignment: Dr. Lurie, as principal investigator, has overseen numerous
research studies on various topics including needle-exchange programs.
His work has extended to critiquing unethical HIV treatment trials in
Africa and HIV vaccine trials. He
will give examples of his work and how research-based advocacy can have
significant, positive effects on our health care delivery system.
Afterwards, he will assist in critiquing several volunteer students’
research ideas, to give an “outside” opinion.
Homework:
Incorporate the feedback received today into the next draft of
the protocols, due after the weekend.
Monday,
Jan 14: Brief Project Review (**Protocols Due**)
Goal:
Review
students’ proposals.
In-Class
Assignment:
We will go through each student’s proposal and briefly critique the research
idea as well as the methods. This
will set the stage for further refinement.
Students will be assigned another students’ protocol to provide a
formal review in writing.
Homework:
Critically evaluate colleagues’ protocols.
Tuesday,
Jan 15: Formal Project Review
Goal:
Review
students’ proposals.
In-Class
Assignment:
Similar to a National Institutes of Health Study Section discussion, students
will provide, in writing and orally, a critique of their assigned protocol.
We will go through each student’s proposal and provide a systematic
critical assessment of the research idea as well as the methods, setting the
stage for further refinement of the protocol.
Homework:
Revise and refine protocol, critically evaluate colleagues’ protocols.
Wednesday,
Jan 16: Formal Project Review
Goal:
Review
students’ proposals.
In-Class
Assignment:
Similar to a National Institutes of Health Study Section discussion, students
will provide, in writing and orally, a critique of their assigned protocol.
We will go through each student’s proposal and provide a systematic
critical assessment of the research idea as well as the methods, setting the
stage for further refinement of the protocol.
Homework:
Revise and refine protocol, critically evaluate colleagues’ protocols.
Thursday,
Jan 17
Goal:
Review
students’ proposals.
In-Class
Assignment:
Similar to a National Institutes of Health Study Section discussion, students
will provide, in writing and orally, a critique of their assigned protocol.
We will go through each student’s proposal and provide a systematic
critical assessment of the research idea as well as the methods, setting the
stage for further refinement of the protocol.
Homework:
Revise and refine protocol, critically evaluate colleagues’ protocols.
Friday, Jan 18: Presentation Skills
1st Half: “How to give a formal
presentation”
Goal:
Learn presentation skills
In-Class Assignment:
This session will give students pointers on how to give an effective and
precise, yet brief presentation about their research protocol in particular,
and any topic in general. We will
utilize exercises to develop speaking skills, use audio-visual aids, and
staying on the point.
2nd Half: “Rapid-Fire Toastmasters”
Goal:
Develop presentation skills
In-Class Assignment:
In this fun and engaging interactive session, students will be given random
topics on which they must give a two minute impromptu speech.
Afterwards, each presentation will be critiqued by the class.
This type of experience will help prepare students for Q&A during
their upcoming formal presentation as well as help develop their ability to
think on their feet and give a dexterous presentation.
Homework: Students will incorporate the principles learned in this session in
their presentations.
Monday,
Jan 21
**No
Class – Martin Luther King Day**
Tuesday,
Jan 22: Student Presentations – **Final Protocols Due**
Goal:
Develop presentation skills
In-Class
Assignment:
Each student (or group or students) will give a short presentation on their
research protocol, with overheads. Students
will use this experience to develop their presentation skills and further
refine their research protocols.
Wednesday, Jan 23: “Now What?”
Guest Speaker:
Glenn
Schneider, MPH
1st Half:
Review and Evaluation
Goals:
Review and assess the course
In-Class Assignment:
We will review and evaluate the course with verbal and written feedback.
2nd Half: Health Advocacy
Goals:
Discuss
advocacy and activism with a professional health activist.
In-Class
Assignment: We will have a guest speaker, Glenn Schneider, currently
Deputy Director of the Maryland Citizens’ Health Initiative, who is working
for a universal health care plan for the state of Maryland.
Glenn has previously worked on the anti-tobacco campaign in Maryland as
well as the anti-handgun campaigns, both of which resulted in significant
legislation designed to reduce smoking and handgun use.
After the presentation of his work, the class will engage in a
discussion revolving around “What is advocacy?” and “What is activism?”
Students will get an idea of the great amount of work required after
research is completed to truly affect change in their communities.
We will also discuss possibilities of carrying out the completed
protocols, either as academic projects or as work with an advocacy
organization.
Homework: Carry out research protocol and make positive, substantive change!
II.
Snow Day Policy
Should
the campus close due to inclement weather, an official campus announcement
will be made through the usual radio and television channels.
Skills sessions and Protocol Review sessions missed due to inclement
weather will be made up, either by adding additional time to subsequent
sessions. Guest Speaker sessions
cancelled by inclement weather will try to be rescheduled based on the guest
speaker’s schedule, but there is no guarantee that these sessions will be
made up.
There
is a Winterterm policy to address a catastrophic weather event that closes the
campus for a significant portion of session.
In that case, Winterterm courses on campus will be canceled.
Students will receive a full refund of their Winterterm tuition.
IV.
Required Text Book
Hulley
SB, Cummings SR, eds. Designing
Clinical Research: An Epidemiologic Approach.
Philadelphia: Lippincott Williams & Wilkins, 1988.
ISBN: 0-683-04249-1.
V.
Methods of Assessment
As this will be an experiential, hands-on course, grades will be based on
production, participation, and improvement, not on rote knowledge or
memorization. Grades will be
based on class participation, a 5-page written research protocols, and written
in-class assignments. Grades will
depend more on improvement through the course than on the quality of the final
product. Any student who becomes
obsessed with their grade will receive an automatic F.
Grades will be roughly distributed as follows:
45% in-class participation
40% written research protocols
15% written assignments
IV.
Special Facilities Needs
None.
VI.
Course Budget
| Instructor Stipend
|
$1000.00
|
|
FICA/SS (8%)
|
80.00
|
|
Instructional
Materials*
|
100.00
|
|
Total
|
$1180.00
|
*Instructional
Materials will consist of photocopies of relevant articles, worksheets, etc.
for class participants.
|
