St. Louis Community/University Health Research Partnerships and Our Community, Our Health Skills...

St. Louis Community/University Health Research Partnerships

andOur Community, Our Health

Skills Building WorkshopFebruary 10, 2010

8:30 a.m. - 12:30 p.m.

Our Community, Our Health

Consuelo H. Wilkins, MD, DirectorAssociate Professor of Medicine and Psychiatry, and

Director, CARE in our Community Program, Washington University in St. Louis

Darcell P. Scharff, PhD, Co-DirectorAssociate 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

Alfreda Brown, MA

Mario Castro, MD, MPH

Mary Ann Cook, PhD

Kendra Copanas

Sarah Gehlert, PhD

Jacque Land

Sherrill Jackson, RN, CPNP, MSA

Nathaniel H. Murdock, MD

Juan B. Peña, PhD

Michael Railey, MD

F. David Schneider, MD

Shira Truitt, JD, MSW, LCSW

Kristin Wilson, PhD, MHA

Rev. Starsky D. Wilson, M.Div

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 HealthAn Academic-Community Partnership Conference SeriesWhat 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 community-based 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 community-academic 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/university- driven, not funding-driven- Invite community input early and often- Invest funding in community whenever possible- Trust - a big issue

Interactive Audience Response SurveyOctober 29, 2009 Inaugural Conference

149 respondents80 community members/CBO

representatives57 academic/university faculty or staff12 students

What impact do the following have on health conditions in African

Americans and other minorities in St. Louis?

Health Beliefs

1. = No Impact2. = Only a Little Impact3. = A Fair Amount of

Impact 4. = A Lot of Impact5. = Not Sure 1%

6%

28%

63%

2%

1 2 3 4 5



Life Skills and Behaviors


Impact 4. = A Lot of Impact5. = Not Sure 0% 0%

18%

81%

1%

1 2 3 4 5



Education



25%

72%

1%

1 2 3 4 5



Poverty


Impact 4. = A Lot of Impact5. = Not Sure 0% 0% 3%

96%

1%

1 2 3 4 5



Social Support Networks



9%

46%41%

3%

1 2 3 4 5



Employment and Working Conditions


Impact 4. = A Lot of Impact5. = Not Sure

0% 1%

24%

75%

1%

1 2 3 4 5



Access to Health Services



24%

72%

2%

1 2 3 4 5



The Physical Environment



9%

41%

48%

2%

1 2 3 4 5

What level of priority would you give to

research about the following health problems?

Heart Disease and High Blood Pressureamong African Americans andother minorities in St. Louis

1. = Lowest Priority2. = Some Priority3. = Moderate Priority4. = High Priority5. = Highest Priority 1% 2%

10%

55%

32%

1 2 3 4 5


research about the following health problems? Diabetes

among African Americans andother minorities in St. Louis

1. = Lowest Priority2. = Some Priority3. = Moderate Priority4. = High Priority5. = Highest Priority 0%

3%7%

49%

41%

1 2 3 4 5



AIDSamong African Americans andother minorities in St. Louis


7%

28%

39%

24%

1 2 3 4 5



Sexually Transmitted Diseases (STDs)among African Americans andother minorities in St. Louis


7%

29%

36%

28%

1 2 3 4 5



Canceramong African Americans andother minorities in St. Louis

1. = Lowest Priority2. = Some Priority3. = Moderate Priority4. = High Priority5. = Highest Priority

0%

10%

30%

36%

23%

1 2 3 4 5



Chronic Lung Diseaseamong African Americans andother minorities in St. Louis


24%

40%

26%

6%

1 2 3 4 5



Flu and Pneumoniaamong African Americans andother minorities in St. Louis


22%

32%29%

14%

3%

1 2 3 4 5


research about the following health problems? Homicide

among African Americans andother minorities in St. Louis


6%

17%

31%

43%

1 2 3 4 5



Kidney Diseaseamong African Americans andother minorities in St. Louis


5%

26%

31%27%

11%

1 2 3 4 5

How much do you agree or disagreewith the following statements about

participation in research?

African Americans and other minorities are less likely to participate in medical research

because it is inconvenient

1. = Strongly Disagree2. = Somewhat

Disagree3. = Neither Agree nor

Disagree4. = Somewhat Agree5. = Strongly Agree

11%

26%

19%

38%

6%

1 2 3 4 5




because they are not informed about research opportunities




3%

14%

6%

46%

31%

1 2 3 4 5




because they do not trust people in the health care system




1% 3%8%

29%

59%

1 2 3 4 5




because they are afraid it might harm them




4% 5%

15%

46%

31%

1 2 3 4 5



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




10%

20%

26%

36%

8%

1 2 3 4 5




because they are concerned they will not be treated with respect




3%

9%

19%

44%

25%

1 2 3 4 5

Survey Results – Health Priorities

1. Cancer2. Cardiovascular Disease3. Tie – Diabetes and Homicide4. HIV/AIDS5. Chronic Kidney Diseases6. Sexually Transmitted Diseases7. Chronic Kidney Diseases8. 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 powerStrategies 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 groupsMake it a ‘co-learning’ experienceAcademic 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,

‘community-competency 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.


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.


Continual vs. Continuous

♦ Continual means intermittent, occurring at

repeated intervals.

♦ Continuous means uninterrupted, unbroken

continuity.


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


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.”

Make an adjustment Adjust

Make a judgment Judge

Make a decision Decide

Perform an investigation Investigate

Make a referral Refer

Reach a conclusion Conclude

Use strong verbs, not nouns.

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

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 While the field of ““Medical EthicsMedical Ethics”” existed in the existed in the Nineteenth Century, it roughly followed the same Nineteenth Century, it roughly followed the same male-centered, paternalistic lines of medical male-centered, paternalistic lines of medical science.science.

No No ““informed consent.informed consent.””

The first American document dealing with the The first American document dealing with the ethics of human subject research (HSR) was ethics of human subject research (HSR) was published by William Beaumont in 1833.published by William Beaumont in 1833.

HSR Ethics in the 19th Century

Late 1800s: Darwinian evolutionary Late 1800s: Darwinian evolutionary theory devolves into theory devolves into ““Social Social DarwinismDarwinism””

a thinly-veiled racism.a thinly-veiled racism.

Many men of medical science see Many men of medical science see women, children, the disabled, and women, children, the disabled, and minority racial groups as akin to the minority racial groups as akin to the animals whose most noble purpose animals whose most noble purpose is to serve mankind as research is to serve mankind as research subjects.subjects.

History of Research on the Disadvantaged

Early in the Twentieth Century, some physicians Early in the Twentieth Century, some physicians cited the cited the ““considerable costconsiderable cost”” of acquiring and of acquiring and maintaining animal research subjects, to justify maintaining animal research subjects, to justify experimentation on orphaned children instead.experimentation on orphaned children instead.

Of orphans, the mentally disabled, and foreign Of orphans, the mentally disabled, and foreign immigrants it was said that they should show immigrants it was said that they should show ““proper gratitudeproper gratitude”” by subjecting themselves to by subjecting themselves to unpopular research.unpopular research.

Legal Bases for Research Participant Protections

1914, 1914, Schloendorff v. Society of New York HospitalSchloendorff v. Society of New York Hospital

Justice Benjamin Cardozo: Justice Benjamin Cardozo: ““Every human being of Every human being of adult years and sound mind has a right to adult years and sound mind has a right to determine what shall be done with his own body.determine what shall be done with his own body.””

However, it wouldnHowever, it wouldn’’t be until 1972 in t be until 1972 in Canterbury v. Canterbury v. SpenceSpence that the ethico-legal doctrine of informed that the ethico-legal doctrine of informed consent would be cemented in American medical consent would be cemented in American medical jurisprudence and Bioethics.jurisprudence and Bioethics.

Legal Setbacks for HSR Protections

In 1902, bills were introduced to regulate human In 1902, bills were introduced to regulate human subject research in America.subject research in America.

Arguing that this would stunt medical progress, the Arguing that this would stunt medical progress, the bills were defeated.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 1900-1950s: Medical research flourishes in America.America.

While many protest scientific abuse, America is While many protest scientific abuse, America is caught up in a progressivist, industrial age whose caught up in a progressivist, industrial age whose medical discoveries appear as being fueled by medical discoveries appear as being fueled by little regulation.little regulation.

Medical Triumphalism rules the dayMedical Triumphalism rules the day

Nazi Experimentation

Tuskegee Study

Nuremburg Doctors’ Trial

Nuremburg Code

Informed consent of volunteers must be obtained Informed consent of volunteers must be obtained without coercion in any form.without coercion in any form.Human experiments should be based upon prior Human experiments should be based upon prior animal experimentation.animal experimentation.Anticipated scientific results should justify the Anticipated scientific results should justify the experiment.experiment.Only qualified scientists should conduct medical Only qualified scientists should conduct medical research.research.Physical and mental suffering and injury should Physical and mental suffering and injury should be avoided.be avoided.There should be no expectation of death or There should be no expectation of death or disabling injury from the experiment.disabling injury from the experiment.

The Pendulum Swing

• While originally the disadvantaged While originally the disadvantaged (women, children, poor, immigrant, (women, children, poor, immigrant, physically and/or mentally challenged, etc.) physically and/or mentally challenged, etc.) composed a far too great percentage of composed a far too great percentage of those enrolled in medical research, now the those enrolled in medical research, now the pendulum has swung in the opposite pendulum has swung in the opposite direction.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:1993: NIH Revitalization Act:

Mandated the inclusion of Mandated the inclusion of Women and Minorities in Clinical Women and Minorities in Clinical Trials.Trials.Designed to bring the Designed to bring the ““PendulumPendulum”” back to the center.back to the center.Designed to enhance the science.Designed to enhance the science.

The Pendulum Swing

1997: FDA Modernization Act:1997: FDA Modernization Act:

Required that the Director of Center Required that the Director of Center for Drug Evaluation and Research for Drug Evaluation and Research (CDER) convene a working group to (CDER) convene a working group to advise on the problem of advise on the problem of underrepresentation in clinical trials.underrepresentation in clinical trials.

The Pendulum Swing

OMB Directive 15OMB Directive 15Requires racial and ethnic Requires racial and ethnic category reporting for federally-category reporting for federally-funded trialsfunded trialsControls whether or not the Controls whether or not the investigator is focusing on racial or investigator is focusing on racial or ethnic differences in healthethnic 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 It is vitally important that the inchoate understandings of the biopolitical the biopolitical ““inclusion/differenceinclusion/difference”” paradigm be paradigm be articulated and investigated.articulated and investigated.

This is true for at least two reasons:This is true for at least two reasons:

If they are true, we must bolster our efforts to broadly and If they are true, we must bolster our efforts to broadly and indiscriminately include currently underrepresented populations indiscriminately include currently underrepresented populations in research for the sake of safety and efficacy.in research for the sake of safety and efficacy.

If they are false, we must curb the rhetoric of difference which If they are false, we must curb the rhetoric of difference which has been shown to perpetuate deterministic and racist fallacies of has been shown to perpetuate deterministic and racist fallacies of genetic difference and group inferiority.genetic difference and group inferiority.

A “culturally-competent” clinical research enterprise

If, as is probably the case, the paradigm is both If, as is probably the case, the paradigm is both true true andand false, then disambiguating this confusing false, then disambiguating this confusing and oft-contradictory area of biopolitics will and oft-contradictory area of biopolitics will inevitably increase the precision and accuracy of inevitably increase the precision and accuracy of the science as well as offering insights as to how the science as well as offering insights as to how the social co-determinants of health intermingle the social co-determinants of health intermingle with the biological co-determinants of health to with the biological co-determinants of health to give us disparate picture of American health.give us disparate picture of American health.

St. Louis Community/University Health Research Partnerships and Our Community, Our Health Skills...

Documents

Transcript of St. Louis Community/University Health Research Partnerships and Our Community, Our Health Skills...