National Center for Deaf Health Research Rochester Prevention Research Center

Expected and Unexpected Results: Establishment of a New Community-Participatory Research CenterAnn Dozier, RN PhD Susan Postlethwait,, MS Thomas T. Fogg, MS Matthew Starr, MPH

The National Center for Deaf Health Research is supported by Cooperative Agreement No. U48 DP000031 from the Centers for Disease Control and Prevention. The views expressed in the poster are solely the responsibility of the authors

and do no necessarily reflect the official views of the Centers for Disease Control and Prevention.

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Abstract

Building on existing partnerships to establish a community-based participatory research program is necessary but not sufficient. The National Center for Deaf Health Research (NCDHR) seeks to promote health and prevent disease among Deaf and hard-of-hearing populations. Guided by the original proposal to establish the Center, initial efforts established infrastructure (dedicated personnel and specialty space to facilitate communication), committees (community, research, communication/dissemination, education, evaluation) and partnerships/contracts (educational institutions; health agencies).

After two years, the above processes were established and moving forward on their priorities. Progress was substantial but uneven across mission areas, and important and unexpected issues involving the project’s participatory nature arose.

We engaged NCHDR staff, partners and community members through a structured participatory process of issue identification, solution generation and prioritization over two large facilitated meetings. The resulting action plan includes specific steps to expand access to minutes and reports (including American Sign Language versions); improve connections and communications between NCDHR committees and re-examine NCDHR’s organization/committee structure. Follow-up meetings will assess progress.

Community-based participatory research requires sustained effort well beyond initial agreements and planning.

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The Prevention Research Center (PRC) Program

A CDC-sponsored network of academic researchers, public health agencies, and community members that conducts applied research in disease prevention and control

Enacted by congress in 1984. By 1996, 13 PRCs were established. Each PRC is expected to collaborate with one

or more community committees. Today, there are 33 PRCs.

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NCDHRNational Center for Deaf Health Research

Mission: Promote health and prevent disease in Deaf and hard-of-hearing (D/hoh) populations through community-based participatory research (CBPR).

NCDHR’s goals are guided by a “cultural model,” not a clinical model.

Cultural Model: Deaf people are a minority or underserved group who share a common language –American Sign Language - and culture.

Clinical Model: Deafness is a condition that should be prevented or treated.

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Deaf Health Issues

Communicating with physicians is more difficult for D/hoh patients than for hearing patients.

Low “fund of information:” many sources of health information are inaccessible to D/hohpeople.

Deaf people are often unfamiliar with family health histories.

It is suspected that substantial health disparities exist, relative to the hearing population.

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Community-Based Participatory Research (CBPR) Principles

Community is central. CBPR builds on community strengths and resources. It features collaborative, equitable partnerships in all

phases of research. Learning and capacity building occurs among partners. It features a balance between research and action. Research must have local relevance. CBPR is a cyclical and iterative process. Findings must be shared with all partners. It is a long-term process, requiring a long-term

commitment.

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NCDHR organizational structure

Executive Committee- Program Director- Committee Chairs

- Administrator- Community Committee

convening agency

Community CommitteeExternal Advisory

Committee

Evaluation Committee- Program Director- Committee Chairs

- Administrator- Partner representatives- Selected local experts

Research SubcommitteeCommunication/Dissemination Subcommittee

Education/Training Subcommittee

Committee Member Attributes

0 5 10 15 20

Executive

Evaluation

Research

Communication

Education

Community Committee

Number of Members

Total Members

D/deaf Members

Native ASL Users

Faculty/Staff/Consultants

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Goals and Accomplishments

I. The NCDHR establishes itself as a leading organization in Deaf health research. Committees, office space, website, staff, subcontracts

II. The NCDHR, its partners and Deaf Community are united through a solid, enduring collaborative relationship. Deaf Health Community Committee is established.

III. Establish a rich, generalizable evidence base regarding health risks and determinants of health in the Deaf community and assure its dissemination. New data collection methods, health behavior surveys in sign

language form, data on risk behavior and disease prevalence

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Goals and Accomplishments

IV. The health research and provider communities are aware of and take interest in the needs of Deaf communities and individuals.

Deaf Strong Hospital, student interns, graduate students

V. Reduce health disparities in the Deaf Community in the local area.

A long-term goal; will be based on evidence from research program and priorities of Deaf Community

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Conclusions

Despite a history of service to and collaboration with the Deaf Community, building a partnership required significant effort and produced challenges.

Achieving a rich communication is often frustrated by time constraints, differing cultures of decision-making and varying views of what constitutes appropriate community involvement.

Complexities of the research process contributed to these challenges.

While external funding was essential it complicated existing and new partner and community relationships and expectations.

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Lessons Learned

1) Rich communication is required among all partners.

a. Facilitated retreats are an effective means of addressing important issues.

2) Create a consensus about community-participatory research early.

a. There is a learning curve for all involved.

3) Create an organizational structure that reflects community-participatory research consensus.

a. Organizational form should follow needed functions.

b. Cultural and linguistic competency must be planned into the organization.

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Lessons Learned

4) Balance committee membership and member commitments.

a. Time commitments, roles and expectations must be clear to all participants and should be revisited annually

5) An effective community committee is essential.a. Decide if members represent organizations or

themselvesb. Recognize that there are inherent tensions; e.g.

faculty and staff are paid, while community members are volunteers.

c. Decide if community committee should include a mix of community members and outside leaders, or community members only.

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NCDHR Logic ModelEvaluation: assessment of performance indicators #1-13

D/HOH presumed to be an underserved cultural and linguistic minority, but little is known about health

knowledge, attitudes, risk behaviors, risk factors or disease prevalence to allow definition of local and

national health priorities or health disparities

RPRC Community Committee: Health Systems Agency Deaf Health Task Force· organizations for

and of D/HOH people

· providers of health services for D/HOH

· educational institutions

· research institutions

RPRC Sponsor: U.of Roch.· Faculty and staff with D/HOH

and prevention research expertise

· Dept. of Psychiatry - Deaf Wellness Center

· PRC offices in Dept. of Comm. & Prev. Med.

· Communications and data/informatics

· Research administration· Evaluation and outcomes

assessment

Relationships with PartnersExternal InternalExt. Advisory Com. Comm. & Prev. Med.MCDOH; NYSDOH Family MedicineNTID NursingRoch. School for the Deaf PediatricsFinger Lakes HSA Psychiatry/DWCHealth Association Preventive MedicineDOE/NIDRR Residency ProgramCDC Medical EducationPRCs Program/URSMD

Inputs

Contextual Conditions: 1. Heterogeneity and complexity of the deaf and hard of hearing population; 2. Multifaceted barriers to communication; 3. Limited “fund of information” greatly impacts healthcare access and quality and is typically unrecognized; 4. Key role of interpreters; 5. Frequently underserved; 6. Severely understudied — little prior information on health; 7. High prevalence of low socio-economic status.

Motivating Conditions1. large D/HOH community; 2. large unmet needs; 3. inclusion, empowerment and self-determination; 4. first center for D/HOH health research in the U.S. and world

Engage the Community formative research; methods development; surveillance; media/education

Establish Research Agendadefine health priorities;plan research agenda;organize research teams

Conduct Core Research methods development;surveillance;determinant research;intervention researchdissemination research

Training/Assistance/Mentoringresearch training curricula;continuing professional education;community education;mentoring D/HOH people in health professions

Activities

Tools, Interventions and Programs data collection methods;adaptation of BRFS, NCHS and YRBS for D/HOH people;visually-based materials and technologies for health education; risk reduction programs; tools for visual/gestural interpreting research and practice in healthcare;products shared with other PRCs for their D/HOH pop’s.

Research Findings research methods and expertise; prevalence and risk of disease; D/HOH health report cards; outreach to D/HOH community; health disparities in D/HOH pop.; determinants of risk; risk reduction interventions; adaptation of evidence-based programs to D/HOH pop.; presentations and publications

Recipients of Training D/HOH health curriculum for primary, secondary education and college; D/HOH health curriculum for RN, MD, DDS, MSW, interpreters; research theses in D/HOH health; interventions for medical practices; continuing professional education

Outputs

Improved health and reduced disparities in D/HOH pop. as measured by adapted BRFS, NCHS and

YRBS surveys administered serially

Short Termorganization of D/HOH population around health issues; health data for planners & policymakers; data-driven health priorities; education of D/HOH on risks and diseases; increased awareness of D/HOH health needs; improved knowledge of D/HOH health in healthcare providers

Intermediate Term improved understanding of determinants of health in D/HOH population; community-wide programs addressing health priorities; change in knowledge and attitudes about risk behaviors in D/HOH population; curricula for D/HOH health promotion; research training programs for D/HOH health research

Long Term policies to enhance preventive services in D/HOH population; educational programs for D/HOH health promotion; environmental changes to reduce barriers; use of evidence-based tools to improve D/HOH healthcare; health professionals with training in D/HOH health; increase in providers and researchers who are D/HOH

Expanded ResourcesExternal grants, gifts and Special Interest Projects to RPRC and partners;Programs and interventions from other PRCs applied to D/HOH;Programs and interventions from URMC and partners applied to D/HOH population

Outcomes