St. Louis Community/University Health
Research Partnerships
and
Our Community, Our Health
Skills Building Workshop
February 10, 2010
8:30 a.m. - 12:30 p.m.
Our Community, Our Health
Consuelo H. Wilkins, MD, Director
Associate Professor of Medicine and Psychiatry, and
Director, CARE in our Community Program,
Washington University in St. Louis
Darcell P. Scharff, PhD, Co-Director
Associate Dean of Academic Affairs,
and Assistant Professor Department of Community Health,
Saint Louis University
http://ourcommunity-ourhealth.org
Our Community, Our Health
Advisory Board
 Nicole Adewale, LEED AP
 Nathaniel H. Murdock, MD
 Alfreda Brown, MA
 Juan B. Peña, PhD
 Mario Castro, MD, MPH
 Michael Railey, MD
 Mary Ann Cook, PhD
 F. David Schneider, MD
 Kendra Copanas
 Shira Truitt, JD, MSW, LCSW
 Sarah Gehlert, PhD
 Kristin Wilson, PhD, MHA
 Jacque Land
 Rev. Starsky D. Wilson, M.Div
 Sherrill Jackson, RN, CPNP, MSA
OCOH: Program Supporters
Washington University:
– Institute of Clinical and
Translational Sciences
– Institute for Public Health
– School of Medicine
– Center for Health Policy
Saint Louis University:
– School of Public Health
– School of Medicine
Our Community, Our Health
An Academic-Community Partnership Conference Series
What is Our Community, Our Health?
Joint program between Washington University and Saint Louis
University to:
•Disseminate relevant and culturally appropriate health information
•Actively engage the St. Louis community in partnerships to help
address local health disparities.
What are the goals of Our Community, Our
Health?
•Establish a culturally-centered conference series focusing on
dissemination of relevant health information
•Develop community-academic partnerships to conduct communitybased research addressing health disparities
•Align academic research priorities with health priorities identified by
the community
October 29, 2009 Inaugural Conference
Convenient Location
• Harris-Stowe State University located in
downtown St. Louis
Attendance
• 170+ with >50% community representatives
Keynote Address
• Gloria Wilder, MD - “Community Academic
Partnerships: Essential to Addressing Health
Disparities”
Community-Academic Success Stories
PANEL
DISCUSSION
• Successful
communityacademic
partnerships
• Two community
representatives
and two
academic
investigators
October 29, 2009 Inaugural Conference
Small Group Discussions
• Co-led by community and academic
• Recurrent themes from table discussions
- Need for transparency in partnerships
- More cultural competency education; knowledge of
‘community’
- Develop ongoing programs: academic/universitydriven, not funding-driven
- Invite community input early and often
- Invest funding in community whenever possible
- Trust - a big issue
October 29, 2009 Inaugural Conference
Interactive Audience Response Survey
 149 respondents
 80 community members/CBO representatives
 57 academic/university faculty or staff
 12 students
What impact do the following
have on health conditions in African Americans and other
minorities in St. Louis?
Health Beliefs
63%
1.
2.
3.
4.
5.
= No Impact
= Only a Little Impact
= A Fair Amount of Impact
= A Lot of Impact
= Not Sure
28%
6%
2%
1%
1
2
3
4
5
What impact do the following
have on health conditions in African Americans and other
minorities in St. Louis?
Life Skills and Behaviors
81%
1.
2.
3.
4.
5.
= No Impact
= Only a Little Impact
= A Fair Amount of Impact
= A Lot of Impact
= Not Sure
18%
0%
0%
1
2
1%
3
4
5
What impact do the following
have on health conditions in African Americans and other
minorities in St. Louis?
Education
1.
2.
3.
4.
5.
= No Impact
= Only a Little Impact
= A Fair Amount of Impact
= A Lot of Impact
= Not Sure
72%
25%
1%
1%
1
2
1%
3
4
5
What impact do the following
have on health conditions in African Americans and other
minorities in St. Louis?
Poverty
1.
2.
3.
4.
5.
96%
= No Impact
= Only a Little Impact
= A Fair Amount of Impact
= A Lot of Impact
= Not Sure
0%
0%
3%
1
2
3
1%
4
5
What impact do the following
have on health conditions in African Americans and other
minorities in St. Louis?
Social Support Networks
46%
1.
2.
3.
4.
5.
= No Impact
= Only a Little Impact
= A Fair Amount of Impact
= A Lot of Impact
= Not Sure
41%
9%
3%
0%
1
2
3
4
5
What impact do the following
have on health conditions in African Americans and other
minorities in St. Louis?
Employment and Working Conditions
1.
2.
3.
4.
5.
75%
= No Impact
= Only a Little Impact
= A Fair Amount of Impact
= A Lot of Impact
= Not Sure
24%
0%
1%
1
2
1%
3
4
5
What impact do the following
have on health conditions in African Americans and other
minorities in St. Louis?
Access to Health Services
1.
2.
3.
4.
5.
72%
= No Impact
= Only a Little Impact
= A Fair Amount of Impact
= A Lot of Impact
= Not Sure
24%
0%
3%
1
2
2%
3
4
5
What impact do the following
have on health conditions in African Americans and other
minorities in St. Louis?
The Physical Environment
48%
1.
2.
3.
4.
5.
= No Impact
= Only a Little Impact
= A Fair Amount of Impact
= A Lot of Impact
= Not Sure
41%
9%
2%
0%
1
2
3
4
5
What level of priority would you give to research
about the following health problems?
Heart Disease and High Blood Pressure
among African Americans and
other minorities in St. Louis
55%
1.
2.
3.
4.
5.
= Lowest Priority
= Some Priority
= Moderate Priority
= High Priority
= Highest Priority
32%
10%
1%
2%
1
2
3
4
5
What level of priority would you give to research
about the following health problems?
Diabetes
among African Americans and
other minorities in St. Louis
49%
1.
2.
3.
4.
5.
= Lowest Priority
= Some Priority
= Moderate Priority
= High Priority
= Highest Priority
41%
7%
0%
1
3%
2
3
4
5
What level of priority would you give to research
about the following health problems?
AIDS
among African Americans and
other minorities in St. Louis
39%
1.
2.
3.
4.
5.
= Lowest Priority
= Some Priority
= Moderate Priority
= High Priority
= Highest Priority
28%
24%
7%
1%
1
2
3
4
5
What level of priority would you give to research
about the following health problems?
Sexually Transmitted Diseases (STDs)
among African Americans and
other minorities in St. Louis
36%
1.
2.
3.
4.
5.
= Lowest Priority
= Some Priority
= Moderate Priority
= High Priority
= Highest Priority
29%
28%
7%
1%
1
2
3
4
5
What level of priority would you give to research
about the following health problems?
Cancer
among African Americans and
other minorities in St. Louis
36%
1.
2.
3.
4.
5.
= Lowest Priority
= Some Priority
= Moderate Priority
= High Priority
= Highest Priority
30%
23%
10%
0%
1
2
3
4
5
What level of priority would you give to research
about the following health problems?
Chronic Lung Disease
among African Americans and
other minorities in St. Louis
40%
1.
2.
3.
4.
5.
= Lowest Priority
= Some Priority
= Moderate Priority
= High Priority
= Highest Priority
26%
24%
6%
3%
1
2
3
4
5
What level of priority would you give to research
about the following health problems?
Flu and Pneumonia
among African Americans and
other minorities in St. Louis
32%
1.
2.
3.
4.
5.
= Lowest Priority
= Some Priority
= Moderate Priority
= High Priority
= Highest Priority
29%
22%
14%
3%
1
2
3
4
5
What level of priority would you give to research
about the following health problems?
Homicide
among African Americans and
other minorities in St. Louis
43%
1.
2.
3.
4.
5.
= Lowest Priority
= Some Priority
= Moderate Priority
= High Priority
= Highest Priority
31%
17%
6%
3%
1
2
3
4
5
What level of priority would you give to research
about the following health problems?
Kidney Disease
among African Americans and
other minorities in St. Louis
31%
1.
2.
3.
4.
5.
= Lowest Priority
= Some Priority
= Moderate Priority
= High Priority
= Highest Priority
27%
26%
11%
5%
1
2
3
4
5
How much do you agree or disagree
with the following statements about
participation in research?
African Americans and other minorities
are less likely to participate in medical research
because it is inconvenient
38%
1. = Strongly Disagree
2. = Somewhat Disagree
3. = Neither Agree nor
Disagree
4. = Somewhat Agree
5. = Strongly Agree
26%
19%
11%
6%
1
2
3
4
5
How much do you agree or disagree
with the following statements about
participation in research?
African Americans and other minorities
are less likely to participate in medical research
because they are not informed about research opportunities
46%
1. = Strongly Disagree
2. = Somewhat Disagree
3. = Neither Agree nor
Disagree
4. = Somewhat Agree
5. = Strongly Agree
31%
14%
6%
3%
1
2
3
4
5
How much do you agree or disagree
with the following statements about
participation in research?
African Americans and other minorities
are less likely to participate in medical research
because they do not trust people
in the health care system
1. = Strongly Disagree
2. = Somewhat Disagree
3. = Neither Agree nor
Disagree
4. = Somewhat Agree
5. = Strongly Agree
59%
29%
8%
1%
3%
1
2
3
4
5
How much do you agree or disagree
with the following statements about
participation in research?
African Americans and other minorities
are less likely to participate in medical research
because they are afraid it might harm them
46%
1. = Strongly Disagree
2. = Somewhat Disagree
3. = Neither Agree nor
Disagree
4. = Somewhat Agree
5. = Strongly Agree
31%
15%
4%
5%
1
2
3
4
5
How much do you agree or disagree
with the following statements about
participation in research?
African Americans and other minorities
are less likely to participate in medical research
because they do not want to find out if they have a health
problem
36%
1. = Strongly Disagree
2. = Somewhat Disagree
3. = Neither Agree nor
Disagree
4. = Somewhat Agree
5. = Strongly Agree
26%
20%
10%
1
8%
2
3
4
5
How much do you agree or disagree
with the following statements about
participation in research?
African Americans and other minorities
are less likely to participate in medical research
because they are concerned they will not be
treated with respect
44%
1. = Strongly Disagree
2. = Somewhat Disagree
3. = Neither Agree nor
Disagree
4. = Somewhat Agree
5. = Strongly Agree
25%
19%
9%
3%
1
2
3
4
5
Survey Results – Health Priorities
1. Cancer
2. Cardiovascular Disease
3. Tie – Diabetes and Homicide
4. HIV/AIDS
5. Chronic Kidney Diseases
6. Sexually Transmitted Diseases
7. Chronic Kidney Diseases
8.
Flu/Pneumonia
Strategies to Develop Successful
Community-Academic Collaborations
 Share the power. Eliminate or minimize perceived or
potential differences in power.
 Learn how each partner operates/functions. Remove
operational or logistical barriers to implementing
proposals.
 Communicate well. Create a system of communicating
that facilitates open and honest dialogue.
Eliminate or minimize perceived or
potential differences in power
Strategies identified by small groups
• Provide opportunities for regular interactions
• Invite community input into proposals early, not after the
proposal is developed
• Consider the demands and limited resources of many
community organizations
• Researchers must respect and value the community for its
experiences and assets not just subjects for research
• Transparency regarding research budget/ financial resources
available
Remove operational or logistical
barriers to implementing proposals
Strategies identified by small groups
 Make it a ‘co-learning’ experience
 Academic investigators/staff must be transparent
about their motives/incentives for doing research
 Acknowledge and respect that research is not
everyone’s ‘full-time job’
 Community organizations must acknowledge their
strengths and limitations to do research.
 Be willing to try new approaches.
 LISTEN
Create an effective system of
communicating
Strategies identified by small groups
• Create contact list with best way to communicate, best time
of day, etc
• Provide regular updates re: progress, concerns, etc.
• Provide cultural competency training, ‘communitycompetency training’
• Develop a ‘research dictionary’. Make sure that partners
know what the words mean.
• Set CLEAR expectations for everyone. Put it in writing.
Tips on Writing to Get Funded
Karen L. Dodson
Office of Faculty Affairs
Washington University School of Medicine
St. Louis, Missouri
February 10, 2010
Objectives of Today’s Presentation
Summarize the journalistic style of writing
to present a clear and concise message in
your grant application
Provide specific grant-writing tips
Provide a suggested template to help you
overcome writer’s block
How to Write Like a Journalist
William Faulkner and Ernest Hemingway
Faulkner: The Artist
“Loving all of it even while he had to
hate some of it because he knows now
that you don’t love because: you love
despite; not for the virtues, but despite
the faults.”
Hemingway: The Journalist
“All you have to do is
write one true
sentence. Write the
truest sentence that
you know.”
Hemingway: The Journalist
When challenged to
write a full story in six
words, he responded:
“For Sale: baby shoes,
never worn.”
--Courtesy of Jay Piccirillo, MD
Word Choice
 Use common words as much as possible.
 Define technical words early.
 Never assume that your reader will understand
“jargon.”
 Always spell out abbreviations at first mention.
 Don’t trust spell check.
 Proofread, proofread, proofread!
Word Choice
Use the word that conveys your meaning most accurately.
When deciding between two such words, choose the
shorter word:
Approximately
About
Commence
Begin
Finalize
Finish
Prioritize
Rank
Terminate
End
Utilize
Use
Word Choice Problems
The problems that copyeditors see most
frequently are words carelessly interchanged.
This can affect meaning.
Word Choice Problems
Ability vs. Capacity
♦ Ability is the mental or physical power to
do something, or the skill in doing it.
♦ Capacity is the full amount that something
can hold, contain, or receive.
Word Choice Problems
Continual vs. Continuous
♦ Continual means intermittent, occurring at
repeated intervals.
♦ Continuous means uninterrupted, unbroken
continuity.
Word Choice Problems
Affect/Effect:
Affect: (verb) influence or modify
Effect: (noun) result
Among/Between:
Among: used with more than two choices
Between: used with only two choices
Word Choice Problems
Compose/Comprise:
Compose: make up or create
Comprise: consist of, be composed of, be
made up of
Decrease/Reduce:
Decrease: lessen in number
Reduce: lessen in amount
Sentence Structure
Sentences are clearest, most forceful, and
easiest to understand if they are simple
and direct.
Sentence Structure
 Therefore, write short sentences like Hemingway,
not long sentences like Faulkner.
 Put parallel ideas in parallel form.
 Simplify by using “active voice.”
 Use strong verbs, not nouns.
 Tighten your writing.
Put parallel ideas in parallel form.
To give a comfortable rhythm to your writing, use
the same pattern for ideas that have the same
logical function. Balance elements of the sentence.
For example:
Instead of: “Tissue samples were weighed, then
frozen, and analyses were performed.”
Write: “Tissue samples were weighed, frozen, and
analyzed.”
Simplify by using active voice.
To simplify, use active, not passive, voice:
“The new drug caused a decrease in heart rate.”
Revised:
“The new drug decreased heart rate.”
Use strong verbs, not nouns.
Make an adjustment
Adjust
Make a judgment
Judge
Make a decision
Decide
Perform an investigation
Investigate
Make a referral
Refer
Reach a conclusion
Conclude
Tighten your writing.
At the present time…
Now
Due to the fact that…
Because
It may be that…
Perhaps
In the event that…
If
Prior to the start of...
Before
On two separate occasions…
Twice
Sentence Structure
When two or more words are combined to
form a compound adjective, a hyphen is
usually required, e.g. disease-related
sleepiness.
Sentence Structure with SpongeBob
SquarePants
Sentence Structure
 Bob is a sponge, and he has square pants.
 Square-pants Bob has sponge-like qualities.
 Bob’s sponge- and square-like qualities make
him a great cartoon character.
 Bob’s a sponge-and-square-like cartoon
character who aspires to be famous.
Sentence Structure
Watch your syntax:
♦ “After standing in boiling water, we examined
the flask.”
♦ “Having completed the study, the bacteria
were of no further interest.”
Paragraph Structure
Organization: Overview first, then details.
♦ Overview: topic sentence, keep it short and
simple.
♦ Details: supporting sentences.
Grantsmanship
Good Presentation
Organize the application:
♦ What do you want to do?
♦ Why do you want to do it?
♦ How are you going to do it?
♦ What is the expected outcome?
♦ Why is it a good thing?
Good Presentation
Develop a logical outline.
Use section headings to help reviewers “find
things.”
Use both major and minor section headings.
Make it easy for reviewers. Don’t make them
work hard.
Read aloud to a friend to catch mistakes.
Good Presentation
Your application tells a story.
Write like Hemingway, not like Faulkner.
Be clear and concise.
Balance clarity and depth.
Be succinct, yet thorough.
Use correct grammar and punctuation.
Proofread! Make a good first impression.
Tips & Strategies for Developing Strong
Community-Based Participatory Research
Proposals
Sarena D. Seifer, Executive Director,
Community-Campus Partnerships for Health
Do
Be creative (e.g., use stories, quotes, and
photos to help make your case).
Ask trusted colleagues not involved in the
proposal to review drafts and be “brutally
honest.”
Invite representatives of potential funding
agencies to visit your community and see
your work in action up-close.
Do
Debrief on any and all comments received by
reviewers
Volunteer to be a reviewer. This will make
you a better grant writer!
Carefully review and address the reviewer
and applicant guidelines. Focus on the
criteria and be sure to address each and
every point.
Using a Template to Write a
Grant Application
Inclusion
On the importance of culturallycompetent clinical research
Dan Bustillos, J.D., Ph.D.
Assistant Professor
Albert Gnaegi Center for Health Care Ethics,
Saint Louis University
Objectives for this presentation
Review the history of human subjects
research (HSR) in the “modern” era
(vis-á-vis “race”)
Identify some of the ethical, social
legal and scientific issues with “race”
in clinical research
Review some initiatives and strategies
for more culturally-competent clinical
trials
HSR Ethics in the 19th Century
While the field of “Medical Ethics” existed in the
Nineteenth Century, it roughly followed the same
male-centered, paternalistic lines of medical
science.
No “informed consent.”
The first American document dealing with the
ethics of human subject research (HSR) was
published by William Beaumont in 1833.
HSR Ethics in the 19th Century
Late 1800s: Darwinian evolutionary
theory devolves into “Social
Darwinism”
a thinly-veiled racism.
Many men of medical science see
women, children, the disabled, and
minority racial groups as akin to the
animals whose most noble purpose
is to serve mankind as research
subjects.
History of Research on the
Disadvantaged
Early in the Twentieth Century, some physicians
cited the “considerable cost” of acquiring and
maintaining animal research subjects, to justify
experimentation on orphaned children instead.
Of orphans, the mentally disabled, and foreign
immigrants it was said that they should show
“proper gratitude” by subjecting themselves to
unpopular research.
Legal Bases for Research Participant
Protections
1914, Schloendorff v. Society of New York Hospital
Justice Benjamin Cardozo: “Every human being of
adult years and sound mind has a right to
determine what shall be done with his own body.”
However, it wouldn’t be until 1972 in Canterbury v.
Spence that the ethico-legal doctrine of informed
consent would be cemented in American medical
jurisprudence and Bioethics.
Legal Setbacks for HSR Protections
In 1902, bills were introduced to regulate human
subject research in America.
Arguing that this would stunt medical progress, the
bills were defeated.
The overrepresentation of certain populations in
medical research was hotly debated at the turn of
the century in America and Europe. The
Antivivisectionists and the Antivaccinationists were
vocal.
HSR’s “Golden Age”
1900-1950s: Medical research flourishes in
America.
While many protest scientific abuse, America is
caught up in a progressivist, industrial age whose
medical discoveries appear as being fueled by
little regulation.
Medical Triumphalism rules the day
Nazi Experimentation
Tuskegee Study
Nuremburg Doctors’ Trial
Nuremburg Code
Informed consent of volunteers must be obtained
without coercion in any form.
Human experiments should be based upon prior
animal experimentation.
Anticipated scientific results should justify the
experiment.
Only qualified scientists should conduct medical
research.
Physical and mental suffering and injury should
be avoided.
There should be no expectation of death or
disabling injury from the experiment.
The Pendulum Swing
• While originally the disadvantaged
(women, children, poor, immigrant,
physically and/or mentally challenged, etc.)
composed a far too great percentage of
those enrolled in medical research, now the
pendulum has swung in the opposite
direction.
Clinical Trials Participants by Race for
NDAs 1995-1999
Source: Evelyn et al; JNMA, vol. 93, no. 12, December, 2001.
The Pendulum Swing
1993: NIH Revitalization Act:
Mandated the inclusion of
Women and Minorities in Clinical
Trials.
Designed to bring the
“Pendulum” back to the center.
Designed to enhance the science.
The Pendulum Swing
1997: FDA Modernization Act:
Required that the Director of Center for
Drug Evaluation and Research (CDER)
convene a working group to advise on
the problem of underrepresentation in
clinical trials.
The Pendulum Swing
OMB Directive 15
Requires racial and ethnic
category reporting for federallyfunded trials
Controls whether or not the
investigator is focusing on racial or
ethnic differences in health
The Pendulum Swing
The “inclusion and difference” paradigm
should be understood as what Michel
Foucault termed a “Biopolitical paradigm”
in which an orthodoxy made up of ideas
and unarticulated understandings drive
both biomedical research and state policy.
A “culturally-competent” clinical
research enterprise
It is vitally important that the inchoate understandings of
the biopolitical “inclusion/difference” paradigm be
articulated and investigated.
This is true for at least two reasons:
If they are true, we must bolster our efforts to broadly and
indiscriminately include currently underrepresented populations
in research for the sake of safety and efficacy.
If they are false, we must curb the rhetoric of difference which
has been shown to perpetuate deterministic and racist fallacies of
genetic difference and group inferiority.
A “culturally-competent” clinical
research enterprise
If, as is probably the case, the paradigm is both
true and false, then disambiguating this confusing
and oft-contradictory area of biopolitics will
inevitably increase the precision and accuracy of
the science as well as offering insights as to how
the social co-determinants of health intermingle
with the biological co-determinants of health to
give us disparate picture of American health.