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Title: CTSI newsletter
Series Title: CTSI newsletter
Physical Description: Serial
Language: English
Creator: Clinical and Translational Science Institute, University of Florida
Publisher: Clinical and Translational Science Institute, University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: November 2008
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Volume ID: VID00005
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Holding Location: University of Florida
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INSID THI I
Focus on ComunityEngagmen


From the Director

Community Engage-
ment and Research
Program

Meet the CERP
Co-Directors

Reaching Out to the
Community


The December newsletter
is scheduled to discuss the
area of Regulatory Knowl-
edge and Research Support,
including pieces by Dr.
Peter lafrate, chairman of
IRB 01; Teresa D'Angelo,
director of the Research
Project Manager Program;
Dr. Wajeeh Bajwa, director
of the Office of Regulatory
Affairs and Licensing; and
Jim Lennon, director of the
Office of Budget Develop-
ment and Negotiations.


Volume 1, Issue 5 November 2008


Many rich and unique resources are available at UF for community
engagement and participatory research. Indeed, with the larg-
est academic healthcare system in the Southeast and the largest
VA healthcare system in the United States, the network of hospitals, clinics
and related patient care
facilities throughout north- li
central Florida is truly
impressive. Now add the
community educational E l
outreach facilities of UF's
Institute for Food and Ag-
ricultural Science (IFAS) iP
in each of Florida's 67 .
counties and one begins to
appreciate the truly state- F i"""
*Unwr.I, ol Fiord CainE illeS ). i on.l( '1 I I M J
wide reach of the CTSI's Shand5 Heaithcjr.e aci.i, int ...n on.,
veleidns Ahd'rs H-ealladre fC,, l'l -ri Flr,,':l ,*da
Community Engagement UF IFAs E.enson ocalionn.nFi r.a I
SC.n.cal RewS rih Un.1,
and Research Program
(Fig. 1). These resources,
together with the dis-
ther he dFig. 1. The CTSI's statewide resources for POR and
tribute network of the community engagement.
CTSI's Clinical Research
Units that support inpatient and outpatient hypothesis-driven investigations
provide UF's clinical and translational scientists and trainees with a virtual
cornucopia of research opportunities!

We will have more to say in a future issue about the Clinical Research Units
that are the backbone of the CTSI's Participant and Clinical Interactions
Program. Read now about how the Institute can help support multi- and
interdisciplinary efforts in late-stage translational 2 (T2) research through
UF's integration with the communities it serves.



b'
Peter W. Stacpoole, Ph.D., M.D.
Director, CTSI


Clinical and Translational Science Institute University of Florida Gainesville, FL 352.265.8909















Volume 1, Issue 5 November 2008


Co muiy ngg met n Rsarh rgrm:B PUL AUC
WORKING~~~~~~ ~ ~ ~ ~ ~ TOIVLEDVRS.OMNTE S CIEPRNR


The University of Florida has a long history of
working and conducting research in communities
throughout the state to better the health and lives of
its diverse populations. Those endeavors will be expanded
and strengthened under the CTSI's Community Engage-
ment and Research Program (CERP). The program will
more actively engage members of these distinct communi-
ties as partners, not only to identify research and programs
that will be most beneficial to their unique needs, but also
to conduct, interpret and disseminate the outcomes of these
initiatives.

Florida's size and diversity provide unprecedented oppor-
tunity for CERP to build on community-based initiatives
already being undertaken. These efforts will further encour-
age and support collaborative partnerships between UF
clinical and translational scientists and schools, community
agencies, managed care organizations, physician practices,
dental practices and other community settings statewide.
UF has key links in communities throughout Florida
through several institutes, colleges, centers and programs
that form the foundation of this expanded community-
based initiative. CERP also will address several existing
challenges necessary to create an integrated and functional
community- and population-based research program.

Achieving CERP goals

Expanding community partnerships
CERP will encourage these dynamic partnerships through
community-based participatory research (CBPR). This
approach recognizes the host of social, political, economic
and other complex factors involved in health, and directly
and equally involves all partners who wish to improve a
community's wellbeing and eliminate inequities. CBPR
is not a new concept, but until now has been limited to
individual studies. UF has previously not provided inter-
nal funding earmarked for community-based research,
but CERP will fund as many as two pilot studies per year
through grants to CTS researchers. In order to further


enhance collaboration, a Community Advisory Council will
be formed comprised of UF faculty, community healthcare
providers, business leaders, school system representatives,
and adult and adolescent community members, including
those from minority groups.

Aiding CTS researchers
In addition to cultivating partnerships with communities
throughout the state, CERP also will reach out to UF clini-
cal and translational science investigators in two ways. The
first is by serving as a single unified resource of expertise,
support, consultation and interaction for those who conduct
community- and population-based research. Currently no
mechanism exists to provide this single point of refer-
ence for investigators to interact with experts regarding
community engagement and CBPR methods that may be
applicable for their research. But CERP will provide tech-
nical expertise on designing and conducting studies that
best fit a target community, and will assist investigators in
identifying strategies for participant recruitment, retention
and interaction that are community specific and culturally
appropriate.

An extensive set of secondary data that can be used to
define populations, examine health outcomes and identify
potential participants for future studies will be housed in
the CTSI, which can be made available with appropri-
ate collaborations and approvals. These include Florida
birth and death certificate information, and data related to
Medicaid and State Children's Health Insurance Program
(SCHIP) recipients in Texas and in Florida.

Second, CERP will provide education about community-
based research and facilitate improving communication,
coordination and sharing among scientists, and between
scientists and community members. This will be accom-
plished through roundtable discussions where best practices
in community research can be shared, and through forums
where investigators can interact with community members.
Active online databases of community, clinical and investi-
gator partners also will also be maintained.


Clinical and Translational Science Institute University of Florida Gainesville, FL 352.265.8909


CTS1 Newsletter I

















Volume 1, Issue 5 November 2008


Community~~~~~~~~~~ EnaeetadRsac.Porm YPUARUC
WORIN T INOV DIVES COMNTE AS ACIEPRNR


Improving children 's and oral health
A CTSI Pediatric Research Advisory
Committee will be established to ensure
that CTS research and training in child
health is guided by the highest ethi-
cal and scientific principals, and that
outstanding resources are available for
conducting pediatric research. The com-
mittee also will facilitate and promote
training in the conduct of inpatient, out-
patient and community-based pediatric
research.

Initially, emphasis will be placed on
developing community research part-
nerships and practice networks aimed
at promoting children's health and


Promote Collaborative Partnerships
*Use of CBPR Techniques
*Develop Practice-Based Networks
*Conducting Community-Based Pilot Studies
*Forming Advisory Board with Community Representation


Single Point of Reference for
*Conduct of Research in the Community
*Culturally Appropriate Participant Recruitment and Retention
*Access to Secondary Data
*Conduct of Outcome Studies in the Community

Education about community and
population-based research
*Investigator Roundtables
*Sharing Best Practices
*Community Forums
*Study Coordinator and Research Team Training


Investigators



Community
Engagement
and
Research
Programs

Community Clinical
Partners Partners


Fig. 2. CERP 1ey lutions.


proper oral health. In line with the Healthy People 2010
objectives, improving infant and child health is of critical
importance not only because it reflects the current status
of a large segment of the U.S. population, but also because
it predicts the health of the next generation. In addition,
working to eliminate disparities in access to and outcomes
of healthcare among minority children may promote better
health in their adult years. Dental disease is a major health-
care issue for both adults and children, and CERP programs
also will focus initially on pediatric and dental networks
both because of their importance to population health and
because UF already has well-established infrastructures in
these areas for community engagement and research.


Directors and partners

The CERP endeavors will be overseen by co-directors
Elizabeth Shenkman, Ph.D., and Michael Marsiske, Ph.D.,
on the Gainesville campus, and Mobeen Rathore, M.D.,
the CERP co-director and associate director of the CTSI's
Clinical Research Unit on the UF Jacksonville campus.
Each is affiliated with institutes and centers that already


have significant ties to Florida communities and affiliations
with state and federal agencies.
Expanding established community connections
A key component of the CERP and its transformative strat-
egies is the Institute for Food and Agricultural Sciences.
With its excellent statewide infrastructure and research
being conducted in all 67 Florida counties, IFAS has the
potential to touch the lives of more than 18 million Florid-
ians and will play a key role in promoting collaborative
partnerships.

From its inception, IFAS has extended research knowledge
and results by putting that information into the hands of the
public in communities across the state to solve problems
and improve the quality of life of its residents. Local needs
drive programs that IFAS offers, and faculty located in each
county are uniquely positioned to address community needs
in collaboration with faculty throughout UF in areas such
as outreach and education; promotion of healthy lifestyle
choices, disease detection and screening, and immuniza-
tions; and development of strategic local partnerships and
coalitions with community leaders, agencies and organi-


Clinical and Translational Science Institute University of Florida Gainesville, FL 352.265.8909


CTS1 Newsletter I












II New slette


Volume 1, Issue 5 November 2008





zations that will lower barriers and improve community healthcare.

Numerous other UF resources have established community connections. These include those that provide strong programs
for children, the elderly and low-income racial and ethnic minorities through the Institute for Child Health Policy (ICHP),
the UF Claude D. Pepper Center for Older Americans, and the Rainbow Center, Northeast Florida's only comprehensive
pediatric and family-focused HIV/AIDS program. Other links include those that have been launched through the colleges
of Dentistry; Nursing and Medicine, not only in Gainesville but at its major urban regional medical campus in Jackson-
ville, as well as through the Regional Tuberculosis Training and Medical Consultation Center funded by the CDC.

CERP will build upon these connections and longstanding relationships to identify critical healthcare issues in communi-
ties throughout Florida, suggest research strategies that are feasible in their settings, and work to facilitate links between
UF investigators, state agencies, and local communities.


Meet the CERP Co-Directors
Elizabeth Shenkman, Ph.D., Michael Marsiske, Ph.D., and Mobeen Rathore, M.D., will co-direct CERP.
Shenkman is a professor and chair of the Department of Epidemiology and Health Policy
Research and a professor of Pediatrics in the UF College of Medicine in Gainesville. She also
is the director of the Institute for Child Health Policy (ICHP), a campuswide institute that
operates several community-based research programs, including a partnership with the Florida
Department of Health and a novel program of funded research to prevent alcohol use among
adolescents.
Contact: eas@ichp.ufl.edu

Marsiske is an associate professor in the Department of Clinical and Health Psychology in the
College of Public Health and Health Professions. He oversees the Participant Recruitment and
Retention Core at the UF Claude D. Pepper Center for Older Americans, which is funded by
the National Institute on Aging and has a rich community engagement core that supports com-
munity recruitment of participants into clinical research studies.
Contact: mmarsisk@phhp.ufl.edu


Rathore directs Jacksonville's Division of Pediatric Infectious Diseases and the Rainbow Cen-
ter, which is Northeast Florida's only comprehensive pediatric and family-focused HIV/AIDS
program. The center receives federal funding from the National Institutes of Health, the Centers
for Disease Control and Prevention and the Health Resources and Services Administration.
Contact: mobeen.rathore @jax.ufl.edu


Clinical and Translational Science Institute University of Florida Gainesville, FL 352.265.8909















Volume 1, Issue 5 November 2008

Reachin Ou-oteCmuntYCRI


The CTSI's Community Engagement and Research
Program (CERP) is one of the main areas in which
the CTSI's work becomes visible to the public at
large. There are scores of researchers and heath-care
professionals working within CERP, each conducting
research and applying results for the improvement of
care within various constituencies some quite broad
and others very narrowly defined. In this issue of the
CTSI Newsletter, we look at a handful of people work-
ing within CERP, and the type of work they're doing
as they engage with the community at large.

Shawn Kneipp, Ph.D., ARNP
Dr. Shawn Kneipp, a faculty member
in the College of Nursing, is manag-
ing a project examining women in
the welfare to work program. Early
results from the research indicate that
there are limits to the commonly-
held assumptions about the impact
that returning to work has on the mental health of
women who have been out of the workforce. The
study, with results published in the Western Journal of
Nursing Research, showed no differences on several
mental health indicators between women who re-
mained on cash assistance compared with those who
had left the rolls.

"Current government policy assumes that women
achieving the goal of leaving public assistance for
paid employment may also have improved psycho-
social health," said Kneipp. "As a result, the federal
government only requires states to measure how many
welfare recipients leave the program for work, not the
effect it has on their health. But this research shows


that assumption may be incorrect."

"Results demonstrate that there were no significant
differences in depression, self-esteem, self-efficacy
or perceived emotional support scores between the
women who continued to receive Aid to Families with
Dependent Children and those who left welfare for
work," Kneipp said.

Kneipp's work has been notable for its inclusion of
subjects from groups frequently represented in public
assistance recipient rolls. Most prior research studies,
which had demonstrated a mental health benefit to
paid employment, had focused on married, middle-
class, white American women, Kneipp said. Although
her current research also included predominantly
women who are white, Kneipp's groups consisted
mostly of single mothers with less education who were
unemployed or had low-paying jobs, a group on whom
little research has been done.

Kneipp said that previous studies have shown a high
correlation between stress-related illnesses, such as
heart disease, high blood pressure and gastrointestinal
disorders, and employment that lacks authority, is not
interesting, not challenging and is repetitious charac-
teristics frequently found in the low-wage jobs typi-
cally available to welfare recipients looking for work.
When combined with the fact that such jobs often do
not include benefits, such as health insurance, and can
interfere with family responsibilities, including caring
for a sick child, legitimate questions about the overall
impact of the welfare to work program on the health of
participants may legitimately be asked.


Clinical and Translational Science Institute University of Florida Gainesville, FL 352.265.8909















Volume 1, Issue 5 November 2008

Reachin Ou-oteCmuntYCRI


The majority of studies conducted since 1996 have
focused on child health and well-being or parent-child
interactions, Kneipp said. That reflects a common per-
ception that women on welfare are not individuals, but
rather only conduits to the children, who are intended
to be the real beneficiaries of income support.

"Evaluating the consequences of welfare reform on
children should not preclude studying the effects that
these regulations will have on the mothers' well-be-
ing," Kneipp said. "Obviously, more research needs to
be done."

Kneipp's research concentrates on health disparities
in disadvantaged or vulnerable populations, with a
focus on women. This work is guided by an ecologi-
cal model, which emphasizes environmental determi-
nants of health (social, economic, political), and how
these factors contribute to health disparities in women
disadvantaged by socioeconomic status. Some of the
ways health disparities are currently being investi-
gated scientifically include how disparities may be
exacerbated or alleviated through welfare policy, and
the pre-disease physiological mechanisms that may
be contributing to disparities through chronic stress
processes. Kneipp is currently involved in two funded
research studies and one community health project
related to these areas.

Contact:
University of Florida
PO Box 100187
Gainesville, FL 32610-0187
Telephone:352-273-6417
Email: skneipp@ufl.edu


Michael Marsiske, PhD
Dr. Michael Marsiske's work in the
College of Public Health and Health
Professions (CPHHP) involves many
aspects of the problems of aging,
especially those aspects that have a
significant impact on an individual's
ability to safely live independently.
One study direction looks at cogni-
tive aging, the changes in thought and thought pro-
cesses that accompany normal aging. In this area,
Marsiske's research places special emphasis on the
ways in which thinking, remembering and problem-
solving changes in later life might impact everyday
functioning and independence.

Marsiske is also a principal investigator on a large
multi-site clinical trial aging study, which includes
an examination of "Useful Field of View" (UFOV), a
measure of speeded visual attention. This work has the
potential for significant impact on the lives of older
individuals because UFOV has been shown to be a
strong predictor of behind-the-wheel driving perfor-
mance.

New work under Marsiske's direction will examine
possible alternative home-based approaches, including
certain kinds of video games, to improving speeded
visual attention. More specifically, the research seeks
answers to the question of whether these alternative
approaches yield measurable improvements in driv-
ing outcomes. The goal is to find strategies that older
adults can use to keep their basic driving-related men-
tal skills sharp, and thereby remain safely mobile and
independent for greater periods of time.


Clinical and Translational Science Institute University of Florida Gainesville, FL 352.265.8909















Volume 1, Issue 5 November 2008

Reachin Ou-oteCmuntYCRI


Marsiske's earlier work examined areas like medica-
tion use, financial management, nutrition and transpor-
tation use are affected by age-related differences and
changes in mental functioning.

Contact:
Phone: (352) 273-5097
mmarsisk@phhp.ufl.edu

Caprice Knapp, Ph.D.
Dr. Caprice Knapp, Assistant Research Professor,
Department of Epidemiology and Health Policy Re-
search, is an applied economist whose areas of spe-
cialization include examining the quality of care and
expenditure patterns for children and adolescents in
vulnerable populations. Specifically, Knapp is inves-
tigating the association between sociodemographic
factors and expenditures for children with life-limit-
ing conditions. In addition to her research agenda,
Knapp is a co-investigator on two statewide projects to
evaluate Florida's Title V. programs for children with
special healthcare needs and children with life-limiting
conditions.

In one study Knapp and collaborators Drs. I-Chan
Huang, Shenkman, and Walter Leite, looked at the
issue of parent proxy ratings, which are frequently
used to measure adolescent's health outcomes (e.g.,
health-related quality of life or HRQOL). In the study,
the researchers examined the difference between the
parent's HRQOL ratings and that of the young pa-
tients. They found that adolescents rated their HRQOL
higher when compared to their parents. The discrep-
ancy was particularly great for those adolescents with
more severe health conditions. For healthcare provid-
ers, the results indicated that pediatric policy/practice


standards based on ratings of children's outcomes by
parents and children should be carefully designed to
take into account differential factors between parent
and adolescent. Listening only to (or over-weighting)
one side or the other is likely to give misleading infor-
mation on patient quality of life a critical concern,
especially when dealing with adolescent patients.

In another study, Knapp and collaborators Drs. Lind-
say Thompson, and Shenkman looked at the relation-
ship between predisposing (age, race/ethnicity) and
need (diagnostic) factors and healthcare spending
patterns for inpatient, outpatient, emergency depart-
ment (ED) and support services (i.e., home nursing,
counseling, various therapies) among Medicaid eli-
gible children with life-limiting conditions during the
last 12 months of life. This study is critical because
over 500,000 children each year fall into this category.
Examining healthcare use patterns provides valuable
information about the types of services used by dif-
ferent groups of children that can be used to identify
potential gaps or disparities in care.

Knapp and her colleagues examined variations in
healthcare expenditure patterns based on diagnostic
categories, age, and race/ethnicity. Infants and children
had similar mean annual total expenditures ($75,000).
Ninety-six percent of total expenditures for infants
were inpatient; they represented only 63% for chil-
dren. Knapp also found that expenditures decreased
in the last six months of life for children overall.
However, racial/ethnic variations were found. Inpa-
tient expenditures decreased for White and Hispanic
children in the last six months of life; whereas Black
non-Hispanic children had a 32% increase in inpatient
expenditures. While Hispanic children experienced de-


Clinical and Translational Science Institute University of Florida Gainesville, FL 352.265.8909















Volume 1, Issue 5 November 2008

Reachin Ou-oteCmuntYCRI


dines in inpatient expenditures in the last six months
of life, their inpatient expenditures during the last 12
months of life were double those of White non-His-
panic children. Unexpectedly, Hispanic children's
expenditures for support services were 10 times higher
than White non-Hispanics while Black non-Hispanic
children had support service expenditures that were
about 80% relative to White non-Hispanic children.

There is an increasing emphasis on implementing
comprehensive care programs for children with life-
limiting conditions that would provide supportive
therapies from the time of diagnosis to the time of
death with an emphasis on care in the home and com-
munity. Knapp and her colleagues found that children
with life-limiting conditions would likely benefit from
placement in these programs, which are designed to
improve children's quality of life through pain and
symptom management, therapy, counseling, and gen-
eral support for the families. This type of result, with
clear implications for the treatment and management
of the youngest patients, is an example of research
translating rapidly from academic settings to the "real
world" of patient care.

Contact:
Phone 352.265.0111 x86087
Email Address: cak@ichp.ufl.edu
Address:
1329 SW 16th Street
PO Box 100177
Gainesville, FL 32610


David L. Wood, M.D.
Dr. David Wood is involved in sev-
eral significant projects that focus on
the special needs of children and
adolescents. Two projects in particu-
lar are producing positive results for
young healthcare patients, especially
those in various stages of transition.

UF's Jacksonville Health and Transition Services pro-
gram, known as JaxHATS, targets a very special sort
of"tween" teens and young adults with disabilities
and special healthcare needs caught between pediatric
and adult-oriented health systems. The only test pilot
program of its type in the state, JaxHATS a collabo-
ration between Children's Medical Services and the
departments of Pediatrics and Medicine in the College
of Medicine-Jacksonville helps 16- to 26-year-olds
with special healthcare needs in the five northeast
Florida counties it serves Duval, Clay, Baker, St.
Johns and Nassau make that transition.

Ironically, the reason this group needs help is because
of medical advances in pediatrics. "Children with
congenital health problems or chronic health condi-
tions originating in childhood are living longer and
longer," said Wood. "In the 1960s and 1970s, children
with Down syndrome or cystic fibrosis rarely made it
into adulthood, but now, due to advances in medical
science and treatment, their life expectancy is almost
normal into their 50s and 60s," he said. "The health-
care and insurance system is not prepared to incorpo-
rate these chronically ill young adults into the adult
care system."


Clinical and Translational Science Institute University of Florida Gainesville, FL 352.265.8909















Volume 1, Issue 5 November 2008

Reachin Ou-oteCmuntYCRI


The JaxHATS multidisciplinary team includes Drs.
Wood; Linda Edwards, an associate professor and
division chief of general internal medicine; Deborah
Ducett, the program director who also serves as social
worker; nurse care coordinator Paulette Daniel; and
UF medical residents and medical students.

The program provides a safety net for the tweens, their
parents and guardians. It serves as a support group and
vital information source for patients and families that
can all too easily fall through the cracks of the health-
care system.

Drs. Wood and William Livingood, developed the
TRAQ based on a review of the existing literature and
on a theoretical framework of skills needed to navigate
healthcare transition successfully. For each identified
area or skill they have applied as a measurement scale
the five-stage Stages of Change model. The instru-
ment was sent to experts in the field of healthcare
transition and they were asked to prioritize items and
provide feedback on item content. A revised version
was administered to 15 youths and tested for read-
ability and clarity. The resultant questionnaire has 11
subscale scores and is organized in the following three
domains: managing your own healthcare, interacting
with healthcare providers, and other translation activi-
ties.


Wood is collaborating with a number of other inves-
tigators to field and test the TRAQ 3.0, including Dr.
Gregory Sawicki, instructor in pediatrics at Harvard
Medical School and associate director of the Pediatric
CF Center Division of Respiratory Diseases at Chil-
dren's Hospital Boston, as well as Dr. Patricia Shearer,
an associate professor of pediatrics and director of the
Cancer Survivor Program at the University of Florida
in Gainesville.

Contact info:

Academic Office
Tower II, Suite 7005
580 West 8th Street
Jacksonville, FL32209
(904) 244-9233

Practice Locations

Jacksonville Health & Transition Services at Shands
Jacksonville (JaxHATS)
1st Floor, Ambulatory Care Center
655 West 8th Street
Jacksonville, FL 32209
(904) 244-9233


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