translational research at the community level: new ... · hhc case study context, founding story...

Translational Research at the Community Level: New

Perspectives, New Questions, New Solutions

Grace Damio, MS Director, Research & Service Initiatives

Hispanic Health Council

National Conference on Engaging Patients, Families and Communities in all Phases of Translational Research to

Improve Health

August 21, 2014

Themes

Benefits to basing health disparities research within communities and generating research questions at the community level.

Community-based infrastructure needed for community-based health disparities research

Expertise of community-based health disparities researchers and research organizations needed by faculty and students in academic settings

Translational Research at the Community Level: New Perspectives, New Questions, New Solutions


Translational Research at the Community Level: New

Perspectives, New Questions, New Solutions

Case Example : Hispanic Health Council

Community-Based Research Organization

Early Research/Policy Impact

Research in Partnership

Research Infrastructure Over Time

Implications for Infrastructure/Resource Needs for Community-Based Health Disparity Research


Community-Based Organization in Hartford, CT

Mission: To improve the health and social well being of Latinos and other diverse communities

Founded in 1978, works statewide, nationally recognized

Core Strategies

Community based participatory research

Evidence based direct services

Policy advocacy Provider Training

Case Example : Hispanic Health Council


HHC Case Study Context, Founding Story

Context:

1970s, growing numbers of Latinos (mostly Puerto Ricans) in Hartford

Service system, including health service system not developing according to cultural and other needs of Latinos

Development of some Latino leadership, infrastructure, focused mostly

on housing and jobs

Founding story

Death of eight-month old Rosa Maria Rivera (1973), due to language barrier in two Emergency Departments catalyzes formation of the “Puerto Rican Health Task Force”, established by community activists, university faculty and students

Grant received from NIMH to study PR health adaptations, combined with grant received from local foundation (HFPG) to fund administration allowed for establishment of new organization focusing on Hispanic health

HHC incorporated in 1978

Original vision: use research to identify needed system and policy changes, advocate for changes


HHC Early Research Work - Community-based research leading to system/ policy change

NIMH grant received to study PR health beliefs and how the community accessed health care – late 1970s

o Findings – of 153 heads of household interviewed, 51.6% reported

themselves to have been sterilized

o Intensive follow-up interviews conducted, along with analysis of historical, socio-economic and cultural factors linked to this

o Among key issues uncovered:

Informed consent form provided only in English Lack of thorough counseling about the procedure Thus, lack of awareness of permanence of procedure

o Impact: Advocacy for policy changes related to informed consent process Future HHC programs incorporated education about fertility control

into program design


HIV/AIDS/Substance Abuse Work – beginning in 1980’s

o Pioneered community education on taboo (HIV) subject o Conducted community assessment on attitudes toward syringe exchange (SE), used results to advocate for SE funding

Evaluated SE, used results to advocate for continued funding

o Series of studies on cultural approaches to substance abuse treatment, synergistic relationship between substance abuse, AIDS and violence and related topics (Singer, NIDA/SAMHSA/CSAT)

Hunger and Food Security Work – starting in late 1980’s

o Conducted Hartford Community Childhood Hunger Identification Project, part of national study, first to document “hunger”

o Results: high levels of food insecurity

o Policy report released at press conference

Establishment of one of the country’s first Food Policy Advisory Commissions (to Mayor’s Office and City Council) – still exists

Continued hunger/food security work at HHC


HHC Early Work - Community-based research leading to system/policy change

HHC Early Work – Health/Health-related education and support services Beginning in 1980s, HHC adds service provision as a core strategies

o HHC notes gaps in services and existing services that are ineffective with Latinos and other targeted populations.

o HHC uniquely positioned to fill gaps, sees it as its responsibility Federal demonstration grant secured in partnership with CT Dept. of Public

Health in response to high infant mortality rates in Hartford neighborhoods o HHC’s first Community Health Worker (CHW) service program developed o Comadrona Program continues today as part of citywide MCH service

system and statewide Health Start Program o Evaluated as part of statewide Healthy Start program, found to be effective

at improving birth outcomes, and cost effective HHC Early Work – Provider Training

o Conducted since HHC’s inception o Conducted with health and human service providers, also with police and

others that interact with community members o Combination training/advocacy


Community-Based Research Conducted in Partnership Case Example:


UConn* HHC

*Dr. Rafael Pérez-Escamilla

HHC (FSNE)/SNAP-ED Program – Context: A research- & evaluation- based program, originally a partnership with the University of

Connecticut


Community Nutrition Assessment of Latino Children

Main Results:

Suboptimal infant feeding practices

Very low intake of fresh fruits and vegetables

Frequent TV viewing

One out of every six preschoolers were obese

Very high levels of food insecurity

o One out of every five preschoolers experienced episodic hunger

Impact:

Guided development of Hispanic Family Nutrition Program (FSNE/SNAP-Ed)

Guided development of follow-up research

Public event held to disseminate results, results used by advocates, community agencies and academics to inform their work



Partnership initiated by UConn, based on FSNE/SNAP-Ed funding Shared budget, leadership, planning, data, dissemination of results

HHC in Partnership

HHC SNAP-Ed Program

Nutrition Education Puppet Shows: Pre-K through 3rd Grade


HHC’s SNAP Education Program (SNAP-ED:

PANA: Programa Para Aprender Sobre Nutrición y Alimentación_

Provides a comprehensive, culturally appropriate approach to nutrition education, including:

o Six puppet shows for pre-k to 3rd grade

o Four jeopardy games for older children and adults

o Hands-on presentations

o Social marketing campaigns developed, disseminated, evaluated

o Bilingual nutrition education materials developed

Operates in seven Connecticut cities, including:

o Four of the five most populous cities

o Six of the eight with the highest Latino populations

o The six cities with critical levels of poverty (50% above the state average)


HHC’s SNAP Education Program (SNAP-ED: PANA: Programa Para Aprender Sobre Nutrición y Alimentación

HHC SNAP-ED Program Evaluation (puppet show component):

Teacher satisfaction documented after each puppet show, consistently very high

Anecdotal evidence regularly documented by teachers indicating that children’s eating behavior changes after viewing puppet shows – including increased fruit and vegetable consumption.

Anecdotal evidence reported by parents that information sent home impacts family dietary habits

HHC is collecting pre and post data on adult increased knowledge

HHC/Yale (Pérez-Escamilla) seeking support for full evaluation of program impact

Program featured in HHC video submission to “Let’s Move Faith & Community-Based Video Competition”

Honorable Mention received

HHC invited to the White House by First Lady Michelle Obama


Hispanic FNP

PANA Nutrition Education Program

Marketing Campaigns

Research & Evaluation

Breastfeeding Promotion and Support

Formative Research

HHC in Partnership: HHC-UConn Starting 1995 SNAP-Ed Program

Culturally Competent Nutrition Education Materials


Policy Impact New Research

Questions

Generated

Evidence-Based Community Health Worker (CHW) Service Models

Developed based on assessment and formative research

Empowered, hands-on roles

Rigorous training and supervision

Culturally relevant

Integrated into clinical health care teams

Clear delineation of function/tasks - CHW: Clinician

Evaluated o two randomized trials completed, one underway

One on health promotion (breastfeeding)

Two on chronic disease management (diabetes)

Continued Partnership – HHC, UConn, Hartford Hospital


Community-Based Research Conducted in Partnership Case Example: HHC, UConn, Hartford Hospital


UConn*

HHC

Hartford

Hospital

*Dr. Rafael Pérez-Escamilla

Program developed from formative/assessment research conducted by HHC: Qualitative interviews, focus groups, community surveys Main research findings: Misinformation and lack of information Lack of role models and support figures Shame and embarrassment regarding breastfeeding


CHW Model for Breastfeeding Promotion: Breastfeeding Heritage and Pride Program

Program Goal To increase the rates of breastfeeding initiation and duration of breastfeeding

among low-income women who give birth at Hartford Hospital Client services Prenatal and post partum, home, clinic and hospital visits, post partum hospital

rounds Telephone outreach and support Pump lending



CHW Health Promotion Model: Breastfeeding: Heritage and Pride Program Evaluation

Initiated by HHC due to policy discussions that indicated lack of confidence in peer counselor capacity HHC invited Dr. Pérez-Escamilla into discussions

HHC and Dr. Pérez-Escamilla decided research was needed to evaluate program model

Randomized Controlled Trial conducted by HHC, UConn and Hartford Hospital

Funded by CDC through the Association of Teachers of Preventive Medicine, CT Family Nutrition (SNAP-Ed) Program, and Hartford Hospital

Objective: to assess the effectiveness of an existing breastfeeding peer counseling program serving a predominantly low-income Latina population in Hartford, CT

Evaluation Results BHP Effective – significant differences in initiation and duration BHP Cost-effective - healthier children, savings to society Recommendations Expansion of peer counseling efforts Continued research


Impact of Evaluation Included in CDC Guide to Breastfeeding Interventions (2005) and IOM report “Accelerating Progress in Obesity Prevention: Solving the Weight of the Nation” (2012) Continued breastfeeding peer counseling and related research Research influences decision of federal government to fund peer counseling through the WIC Program, HHC one recipient of those funds in CT HHC program expanded and replicated

Continued Research by HHC/UConn-Yale, Hartford Hospital Research Team Use of peer counselors to support Exclusive Breastfeeding (funded by CDC) Use of peer counselors to support breastfeeding among obese women (funded by

Donaghue Fndtn.) Eddy – Understanding effect of BESTOW peer counselor intervention through analysis of video-taped feeding sessions (funded by CDC)



CHW Health Promotion Model: Breastfeeding: Heritage and Pride Program

CHW Models: Chronic Disease Management Latinos in Hartford with Type 2 Diabetes….Needs Assessment –

Preliminary Work: DIPAL – Diabetes Prevention Among Latinos Main objective: Identify barriers for diabetes prevention and treatment. o Case- control needs assessment (N=201) o Self-reported diabetes without complications o Latino women between 35 – 60 years old

Results: o High level of health problems/ inadequate health care access - subspecialty

care o High level of food insecurity o Low level of basic nutrition knowledge and food label utilization o Low understanding and low self-efficacy levels regarding overall diabetes

care o Low levels of social support – suggested high levels of depression o Clinical symptoms of inadequate diabetes management o Disseminated through press event calling for peer counseling

Continued Partnership –HHC, UConn, Hartford Hospital


Connecticut EXPORT Center for Eliminating Health Disparities among Latinos CEHDL

Three Institutional Partners: UConn/Yale (PI, Director), Rafael Pérez-Escamilla) The Hispanic Health Council (co-PI, Deputy Director, Grace Damio) Hartford Hospital (co-PI, Laurine Bow)

Funder: NIH-NCMHD Funding Level: $8.2 million Period: 2005-2011 HHC budget – 45%

UConn/Yale

HHC

Hartford Hospital


Continued Partnership – HHC, UConn/Yale, Hartford Hospital

Adaptation of CHW Health Promotion Model to Chronic Disease Management: Diabetes among Latinos Best Practices Trial (DIALBEST)

HHC Roles: Co-Investigator, Coordinator, Peer Counselors, Interviewer/ Phlebotomist Data collection, cleaning, management Peer counseling services Peer counseling manual development Participation in leadership/planning team Participation in evaluation, authorship, presentations

CEHDL Partnership

Randomized longitudinal trial examining the impact of home-based peer counseling on behavioral, metabolic, and health outcomes among inner-city Latino(a)s with type 2 diabetes 17 home visits in 12 months; intervention includes education and care coordination/advocacy Peer counselors met with clinical team weekly for case conferencing Extensive data collection, including blood draws, at baseline, 3, 6, 9, 12 mo. & 6 mo. post intervention


CHW Models: Diabetes Peer Counseling Intervention Study (DIALBEST)

Results/Impact:

HbA1C level reduction at 12 months:

o 1 point in the intervention (PC) group

o 0.4 point in the control (no PC) group

o Impact sustained through the six-month post-intervention period ( 18 months) (Diabetes Care, 8/14)

Gaps in health care identified by peer counselors, resulting in training of medical residents:

o Case presentations by peer counselors

o Cross cultural training by HHC program

Follow-up study underway: impact on glycemic control among Latinos with diabetes of stress reduction training conducted by community health educator

o Implications for inclusion of CHWs in health care reform

Qualitative sub-study conducted on complex data collection by community staff


CEHDL Partnership


CEHDL Partnership

Other HHC CEHDL Role: Education and Training Core – Cultural Competence Training Enhanced existing HHC curriculum for:

o Training medical residents o Health equity training at local health departments o Development and delivery of undergraduate semester-long course o Training community health workers, clinicians and researchers involved with CEHDL o Delivery of a series of grand rounds presentations at Hartford Hospital

Current Status: o HHC fee-for-service contracts with (among others):

UConn Health Center Graduate Medical Education Program Saint Francis Hospital and Medical Center Connecticut Hospital Association CT Department of Education

o Beginning of process to evaluate beyond self-report

Other HHC CEHDL Role: Leadership of the Community Core

Community Core Projects:

Community newsletter on health disparity topics targeting Community Health Workers

Evaluation of HHC’s annual health fair, new model developed based on evaluation results

Youth development pilot project – health disparities focus

Annual community focus groups on health disparity topics

Annual facilitated community dialogues on health on health disparity topics, involving responses from community leaders

Formative research on a community informed strategy to increase fruit and vegetable access


CEHDL Partnership

Hartford Mobile Market

An Example of Community- Based Participatory Research

Questions and solutions generated in and by the community…


CEHDL Partnership: Community Core

In 2009, CEHDL’s Community Core conducted a series of community focus groups with low-income Puerto Rican women in Connecticut.

The purpose of the focus groups was to document the social determinants of stress, from their perspective.

Among the results, participants identified food insecurity (including running out of food and limited access to healthy food) as a stressor that impacts maternal health.

(JHCPU, Nov. 2011, 22.4)

Community Calls for Access to Healthy Food



Community Calls for Access to Healthy Food

Focus groups were followed by a community dialogue on

social determinants of maternal health

o Community members

o Community leaders

Community members were presented with stressors

identified during focus groups and asked for solutions

Community leaders responded by committing work towards achieving the solutions

Results from the dialogue included the following solutions to food insecurity recommended by community members:

o Establish a community garden

o Create a mechanism to maximize the benefits of social services including WIC and SNAP



Formative Research on fruit and vegetable access:

Conducted after focus groups and dialogue

By a multi-disciplinary team of CEHDL's Community Core

To develop an innovative, feasible and sustainable method of increasing access to fruits and vegetables in Hartford's south end

The formative process included:

A series of brainstorming sessions among team members

A focus group and individual conversations with HHC staff who live in Hartford's south end

A series of focus groups and interviews with community members

Conversations with key leaders in the area of food security from a variety of government and private organizations at the city and state levels

Extensive review of literature

Field research to determine locations where increased access to fruits and vegetables are most needed


CEHDL Partnership

Prior CBPR Formative Research

CEHDL Focus Groups Identified Food Insecurity Stressor

CEHDL Community Dialogue Identified Some Solutions

CEHDL Steering Committee/Trans- Disciplinary Team

Community Advisory

Board

HHC Staff, Key Informants

Target Community Members

Literature/internet search, contact with mobile food system

project coordinators, site visit

Conversations with leaders representing SNAP, WIC, farmers markets, Hartford Food System, nutrition education, the regional food bank, local health department, advocacy

Phase 1: Community Focus Groups Phase 2: Community Focus Groups/Individual Interviews

Key considerations: - Location and schedule - Produce source, selection, local

vs. non-local, in-season vs. not in-season

- Sales volume and price - EBT – SNAP, FMP, WIC vouchers - Other

Hartford Mobile Market

Establishment of…

CBPR Formative Research on Increasing Access to Fruits and Vegetables Leading to Hartford Mobile Market Concept



Hartford Mobile Market Concept: seamless source of fresh produce that maximizes access and

responds to expressed community needs and wants, documented through our extensive formative research we conducted, by:

o operating year-round o North and south ends – HHC conducted focus groups in north end

to inform operations from north-end perspective o offering both local produce and non-local produce that

community members desire; and o accepting a variety of government assistance programs to pay for

the produce: SNAP benefits WIC produce vouchers for local and non-local produce* WIC Farmers Market Coupons and Senior Farmers Market

Coupons –for only local produce* * Would require policy waivers, currently seeking through FNS



Mobile produce market conceptualized to serve the Hartford neighborhoods with least access to fresh produce – north and south end.

Partnering with the Hartford Food System which will coordinate project operations.

HHC to conduct and coordinate nutrition and health education, and the extensive evaluation.

(Planned) evaluation:

o feasibility, business sustainability,

o increased produce access and intake,

o impact on use of government food assistance programs

o satisfaction of customers and farmers.

o Dr. Pérez-Escamilla at Yale University to provide scientific leadership

We believe that the implementation and rigorous evaluation of this “hybrid” model will inform others interested in developing similar strategies in their communities, and funders and policy makers interested in supporting them.

Hartford Mobile Market Concept



We intend to be operational before the end of the year. HHC conducted focus groups in Hartford’s north end to complete the

formative research with community members. Hartford Food System has purchased a bus, and is in planning its renovation,

including artistic design by a local youth group. Grants awarded: Hartford Hospital and the Harvard Pilgrim Healthcare

Foundation, totaling $50,000. Grants outstanding: $175,000. Plans to submit to several other funders, including to support for operations

and evaluation. Other supporters and stakeholders:

o Hartford Department of Health and Human Services will provide in- kind: parking space, fuel, facilitation of permitting

o CT legislature -interest expressed in providing financial support; o Executive Director of CT’s Farm Service Agency -has provided guidance;


Continued Partnership…HHC/Yale

Hartford Mobile Market Current Status

Reflections on an Effective Community-Academic Partnership



Reflections on an Effective Community-Academic Partnership

Criteria Met:

Shared planning from beginning of each project

Shared leadership

Shared budgets: o Example CEHDL, HHC 45% of budget

o Budget shared equitably based on work performed

o Indirect cost allocation provided to HHC based on its full negotiated rate

Shared learning

Shared data analysis

Shared commitment to community benefit from research

Shared dissemination – Example bibliography


Continued Partnership…HHC/Yale

Sample Bibliography from Partnership

1. Pérez-Escamilla R, Damio, G, Chhabra J, Fernandez M, Segura-Pérez S, Vega Lopez S, Kollannoor-Samuel G, Calle M, Shebl F, D’Agostino D, Impact of a community health workers-led structured program on blood glucose control among Latinos with type 2 diabetes: the DIALBET trial, Diabetes Care, Publish Ahead of Print, published online August 14, 2014

2. D'Angelo, Karen A.; Chaparro, Carmen; Kornblum, Rita; Damio, Grace; and Pérez-Escamilla, Rafael (2013) "Development, Implementation, and Assessment of Health Equity Action Training (HEAT): Implications for Local Health Departments," Journal of Health Disparities Research and Practice: Vol. 6: Iss. 2, Art. 2.

3. Honigfeld, L., Chandhok, L., Wiley, C., Dworkin, P., Damio, G., Antonelli, R. Care Coordination: Improving Children’s Access to Health Services. Farmington, CT: Child Health and Development Institute of Connecticut. 2012

4. Vega-López S, Calle M, Fernandez, M.L., Kollannoor-Samuel, G, Chhabra J, Todd M, Segura-Pérez S, D’Agostino D, Damio G, Pérez-Escamilla R, Triglyceride screening may improve cardiometabolic disease risk assessment in Latinos with poorly controlled type 2 diabetes, Journal of Healthcare for the Poor and Underserved. 2013. Nov;24(4):1739-55

5. Bermudez-Millan A., Damio G., Cruz J., D’Angelo K., Segura-Pérez-S., Pérez-Escamilla R., Stress and the Social Determinants of Maternal Health among Puerto Rican Women: A CBPR Approach Journal of Health Care for the Poor and Undeserved. Nov 2011 (JHCPU 22.4)

6. Kollannoor-Samuel G, Chhabra J, Fernandez ML, Vega-López S, Pérez, Segura-Pérez-S, Damio G, Calle MC, D’Agostino D, Pérez-Escamilla, R., Determinants of Fasting Plasma Glucose and Glycosylated Hemoglobin Among Low Income Latinos with Poorly Controlled Type 2 Diabetes. J Immgr Minor Health (2011) 12:809-817

7. Kollannoor-Samuel G,Wagner J, Damio G, Segura-Pérez S, Chhabra J, Vega-López S, Pérez-Escamilla R, Social Support Modifies the Association Between Household Food Insecurity and Depression Among Lations with Uncontrolled Type 2 Diabetes, J Immigr Minor Health, Dec 2011; 13(6):982-989

8. Chapman D, Wetzel K, Anderson A, Damio G, Perez-Escamilla R. Breastfeeding Peer Counseling: From Efficacy Through Scale-up. Journal Human Lactation, J Hum Lact. 2010 Aug;26(3):314-26


http://www.ncbi.nlm.nih.gov/pubmed/20715336

9. Bermúdez-Millán A, Hromi-Fiedler A, Damio G, Segura-Perez S, Pérez-Escamilla R. Egg Contribution towards the Diet of Pregnant Latinas. Ecol Food Nutr. 2009;383-403

10. Dharod JM, Paciello S, Bermúdez-Millán A, Venkitanarayanan K, Damio G, Pérez-Escamilla R. Hands Bacterial Contamination Increases Risk of Cross-Contamination among Low Income Puerto Rican Meal Preparers. J Nutr Educ Behavior. 2009;41:389-97

11. Hromi-Fiedler A, Bermúdez-Millán, A, Segura-Perez S, Damio G, Perez-Escamilla R. Adaptation of the U.S. food security survey module for low-income pregnant Latinas: Qualitative phase. Journal Hunger Environmental Nutrition 2009;4:62-80.

12. Fitzgerald N., Damio G., Segura-Pérez S., Pérez-Escamilla R. Nutrition knowledge, food label use, and food intake

patterns among Latinas with and without type 2 diabetes. J Am Diet Assoc. 2008; 108(6):960-7.

13. Rafael Pérez-Escamilla, Grace Damio, Jeannette DeJesús, Laurine Bow, Jyoti Chhabra,Nancy H. Bull. The Connecticut Center of Excellence for Eliminating Health Disparities among Latinos. JHEOE 2008; 12(3):169-178.

14. Dharod JM, Pérez-Escamilla R, Paciello S, Bermúdez-Millán A, Venkitanarayanan K, Damio G, Comparison between self-reported and observed food handling behaviors among Latinas. J Food Prot. 2007; 70(8):1927-32

15. Anderson AK, Damio G, Chapman DJ, Pérez-Escamilla R. Differential response to an exclusive breastfeeding peer counseling intervention: the role of ethnicity. J Hum Lact. 2007; 23(1):16-232006

16. Fitzgerald N, Himmelgreen D, Damio G, Segura-Pérez S, Peng YK, Pérez-Escamilla R. Acculturation, socioeconomic status, obesity and lifestyle factors among low-income Puerto Rican women in Connecticut, U.S., 1998-1999. Rev Panam Salud Publica. 2006; 19 (5):306-13

17. Anderson AK, Damio G, Young S, Chapman DJ, Pérez-Escamilla R. A randomized trial assessing the efficacy of peer counseling on exclusive breastfeeding in a predominantlyLatina low-income community. Arch Pediatr Adolesc Med. 2005; 159(9):836-41

18. Dharod J, Segura-Pérez S, Damio G, Bermúdez-Millán A, Pérez-Escamilla R. Influence of the Fight BAC! food safety campaign on an urban Latino population in Connecticut. J Nutr Educ Behav. 2004; 36(3):128-32



19. Chapman D, Damio G, Pérez-Escamilla R. Differential response to breastfeeding peer counseling within a low-income, predominantly Latina population. J Hum Lact. 2004; 20(4):389-96

20. Chapman D, Damio G, Young S, Pérez-Escamilla R. Association of degree and timing of exposure to breastfeeding peer counseling services with breastfeeding duration. Adv Exp Med Biol. 2004; 554:303-6

21. Chapman, D.J., Damio, M., Young, S., Pérez-Escamilla, R. Effectiveness of breastfeeding peer counseling in a low-income, predominantly Latina population: a randomized controlled trial. Arch Pediatr Adolesc Med. 2004;158:897-902

22. Bermúdez-Millán A, Pérez-Escamilla R, Damio G, González A, Segura-Pérez S. Food safety knowledge, attitudes, and behaviors among Puerto Rican caretakers living in Hartford, Connecticut. J Food Prot. 2004; 67(3):512-16

23. Anderson AK, Damio G, Himmelgreen DA, Peng YK, Segura-Pérez S, Pérez-Escamilla R. Social capital, acculturation, and breastfeeding initiation among Puerto Rican women in the United States. J Hum Lact. 2004; 20(1):39-45

24. Damio G, Pérez-Escamilla R, Bermúdez-Millan A, Stopka TJ, Gonzalez A, Segura-Pérez S, Rosario A, Himmelgreen D. Translating knowledge into practice: un ejemplo de nutrición en acción. Prac Anthr 2003; 25(3):41-45

25. Stopka TJ, Segura-Pérez S, Chapman D, Damio G, Pérez-Escamilla R. An innovative community-based approach to encourage breastfeeding among Hispanic/Latino women. J Am Diet Assoc. 2002; 102(6):766-7



Reflections on the Need for Continuous Community-Based Research Infrastructure




HHC Case Example

Research Infrastructure CEHDL Current 2009 Research Staff

Dep. Dir./Comm. Core Dir. (HHC Res. Dir.) .40 FTE .18 FTE

Community Core Coordinator 1.00 FTE .00 FTE

Research Core Scientist .10 FTE .00 FTE

Administrative Support 1.00 FTE .00 FTE

Study Coordinator 1.00 FTE .05 FTE

Intervention Staff (Peer Counselors, Sup.) 2.00 FTE 2.50 FTE

Data Collection/Outreach Staff 1.00 FTE .50 FTE

Program Evaluator .00 FTE .20 FTE

HHC Research Budget

2003 $1,800,000 Pre-CEHDL

2004 $1,300,000 Pre-CEHDL

2005 $ 950,000 Pre-CEHDL

2006 $ 700,000 CEHDL

2007 $ 800,000 CEHDL

2008 $ 770,845 CEHDL

2009 $ 733,945 CEHDL

2010 $ 733,305 CEHDL

2015 $ 439,367 Post-CEHDL



Successes and Challenges to CBOs in Securing and Sustaining Infrastructure for

Community-Based Health Disparities Research

HHC Case Example - Strengths/Successes :

Research part of organization’s mission, vision, core strategies since inception

BOD Research Committee

History of securing NIH grants directly, mostly HIV/Substance Abuse research

History of authentic, equitable partnerships

IRB established in 1990’s

Adequate technology capacity for data management, storage

Federally negotiated ICR

Social justice orientation

Relationship with community facilitates participant and staff recruitment

Long-term research staff and leadership

Four strategies: others offer support to research


Successes and Challenges to CBOs in Securing and Sustaining Infrastructure for Community-Based Health Disparities Research

HHC Case Example - Challenges: Loss of scientific capacity, and sometimes grants/funds when researcher leaves Competition with hard salaries and some other compensation at universities

Competition with university infrastructure and idea that university is the “real

research environment”

Difficulty diversifying research topics without expert/PI already on staff

Lack of consistent support staff to support grant writing, IRB

Limited time among existing staff for producing publications and grant writing

Limited resources for maintaining and updating/upgrading technology as needed


Conclusions/Recommendations

1. It is important for health disparities research to be conducted at the community level, involving communities from the point of generating research questions and planning studies.

2. For health disparities research to be conducted at the community level, research funding streams and research budgets must provide sustained support to communities for sustained infrastructure and for capacitation.

3. Community organizations are critical to successful health disparities research, and must be viewed as essential core partners in the research enterprise.

4. The expertise of community-based health disparities researchers should be shared with academic faculty and students.

5. There is a need for investment in professional development networks of community based organizations engaged in health research partnerships. Community Campus Partnerships for Health convenes the Community Network for

Research Equity & Impact that facilitates peer mentoring, skill-building and advocacy.

In Hartford, the Institute for Community Research is facilitating the building of a Community Research Alliance to address some of these issues. Similar processes are happening locally in other parts of the country.


Thank you!


¡Muchas gracias!

translational research at the community level: new ... · hhc case study context, founding story...

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