Health Research Participation, Opportunity, and Willingness Among Minority and Rural Communities of Arkansas

OBJECTIVES/GOALS: To improve and expand health and research literacy throughout Indiana by sharing health-focused resources and research outcomes.To encourage and increase health research participation throughout Indiana by promoting health research opportunities, including clinical studies.METHODS/STUDY POPULATION: Discover and understand community concerns and barriers to good health and clinical research participation by providing a platform for individuals and communities to share their voices.Educate Indiana residents on the importance of participating in health research.Engage with the community to meet them where they are (online) and continue to build relationships throughout the state.Promote healthy living for Indiana residents by sharing health education and resources from existing state health organizations and initiatives.Develop and maintain the largest statewide database of research volunteers.RESULTS/ANTICIPATED RESULTS: The anticipated results from this program include engagement of all populations and all communities throughout the state in conversation and education around good health and health research, as well as participation in health research across the CTSI’s partner organizations. Large-scale growth is expected in both the online community and consented volunteer registry is expected to include and engage racially and ethnically diverse populations, as well as special health populations, such as representatives of rural communities, aged, rare disease survivors, and transgender individuals.DISCUSSION/SIGNIFICANCE OF IMPACT: Thorough this work, the Indiana CTSI has developed a unique program, educating the public about health research and opportunities to participate, while simultaneously supporting research departments with marketing promotion of their efforts, and a ready statewide volunteer community.

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Diet Quality among Yup’ik Eskimos Living in Rural Communities Is Low: The Center for Alaska Native Health Research Pilot Study

Journal of the American Dietetic Association ◽

10.1016/j.jada.2006.04.026 ◽

2006 ◽

Vol 106 (7) ◽

pp. 1055-1063 ◽

Cited By ~ 50

Author(s):

Andrea Bersamin ◽

Bret R. Luick ◽

Elizabeth Ruppert ◽

Judith S. Stern ◽

Sheri Zidenberg-Cherr

Keyword(s):

Pilot Study ◽

Rural Communities ◽

Diet Quality ◽

Alaska Native ◽

Health Research

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The Use of Web-Based Technologies in Health Research Participation: Qualitative Study of Consumer and Researcher Experiences

Journal of Medical Internet Research ◽

10.2196/12094 ◽

2018 ◽

Vol 20 (10) ◽

pp. e12094 ◽

Cited By ~ 3

Author(s):

Patrick Cheong-Iao Pang ◽

Shanton Chang ◽

Karin Verspoor ◽

Ornella Clavisi

Keyword(s):

Qualitative Study ◽

Health Research ◽

Research Participation ◽

Web Based

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Climate change and health research: has it served rural communities?

Rural and Remote Health ◽

10.22605/rrh2343 ◽

2013 ◽

Author(s):

Erica Bell

Keyword(s):

Climate Change ◽

Rural Communities ◽

Health Research ◽

Climate Change And Health

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Attitudes towards health research participation: a qualitative study of US Arabs and Chaldeans

Family Practice ◽

10.1093/fampra/cmy071 ◽

2018 ◽

Vol 36 (3) ◽

pp. 325-331 ◽

Cited By ~ 1

Author(s):

Kimberly D Campbell-Voytal ◽

Kendra L Schwartz ◽

Hiam Hamade ◽

Florence J Dallo ◽

Anne Victoria Neale

Keyword(s):

Qualitative Study ◽

Health Research ◽

Research Participation ◽

Health Behaviours ◽

Research Process ◽

Study Phase ◽

Personal Factors ◽

Structured Interviews ◽

Health Care Environment ◽

Risks And Benefits

Abstract Background The Arab Muslim and Chaldean Christian American community is unified by language but culturally diverse. Researchers are challenged to engage the Arab/Chaldean community to meet immigrant health needs. Arabs/Chaldeans are identified as white in clinical data sets making it difficult to identify health behaviours and patterns unique to the community. Objectives To explore the views of members of the Arab/Chaldean community, including researchers and the lay public, regarding health research participation and the role of clinicians, researchers and community leaders in the research process. Methods A qualitative study of Arab and Chaldean adults and researchers conducted in a US community with a large Arab/Chaldean population. Five semi-structured focus group discussions were triangulated with five in-depth semi-structured interviews with Arab or Chaldean primary care researchers. Responses were audio-recorded and transcribed verbatim. Transcripts were coded and thematically analysed, and findings confirmed with community representatives. Results Three themes were identified: (i) research expectations: risks and benefits; (ii) health care environment: clinicians as recruiters and (iii) research participations: risks and benefits. Themes captured concerns with social relationships, reputation or trust and the cost and benefit of research participation. In the Arab/Chaldean community, institutional and political fears and distrust are amplified. Respect for physicians, teachers and faith leaders connected with or recruiting for studies enhances likelihood of research participation. Conclusion Clinical researchers should address the cultural and immigration histories of Arab/Chaldean research participants. Studies that maximize trust will minimize participation bias and lay the groundwork for improved health. Institutional, sociocultural and personal factors require a pre-study phase to engage and educate participants.

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Improving community participation in clinical and translational research: CTSA Sentinel Network proof of concept study

Journal of Clinical and Translational Science ◽

10.1017/cts.2020.21 ◽

2020 ◽

Vol 4 (4) ◽

pp. 323-330

Author(s):

Deepthi S. Varma ◽

Alvin H. Strelnick ◽

Nancy Bennett ◽

Patricia Piechowski ◽

Sergio Aguilar-Gaxiola ◽

...

Keyword(s):

Health Research ◽

Minority Groups ◽

Research Participation ◽

Albert Einstein College ◽

Community Outreach ◽

Willingness To Participate ◽

Community Members ◽

Sentinel Network ◽

The University ◽

Research Studies

AbstractBackground:Research participation by members of racial or ethnic minority groups continues to be less than optimum resulting in difficulties to generalization of research findings. Community-engaged research that relies on a community health worker (CHW) model has been found effective in building trust in the community, thereby motivating people to participate in health research. The Sentinel Network study aimed at testing the feasibility of utilizing the CHW model to link community members to appropriate health research studies at each of the research sites.Methods:The study was conducted at six Clinical and Translational Science Award institutions (N = 2371) across the country; 733 (30.9%) of the participants were from the University of Florida, 525 (22.0%) were from Washington University in St. Louis, 421 (17.8%) were from the University of California, Davis, 288 (12.1%) were from the University of Michigan, Ann Arbor, 250 (10.5%) were from Rochester, and 154 (6.5%) from Albert Einstein College of Medicine. Trained CHWs from each of these sites conducted regular community outreach where they administered a Health Needs Assessment, provided medical and social referrals, and linked to eligible research studies at each of those sites. A 30-day follow-up assessment was developed to track utilization of services satisfaction with the services and research study participation.Results:A large majority of people, especially African Americans, expressed willingness to participate in research studies. The top two health concerns reported by participants were hypertension and diabetes.Conclusion:Findings on the rate of navigation and enrollment in research from this study indicate the effectiveness of a hybrid CHW service and research model of directly engaging community members to encourage people to participate in research.

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2.3-O6Recruitment and research participation of black and ethnic minority citizens in health research in the UK: a toolkit for good practice

European Journal of Public Health ◽

10.1093/eurpub/cky047.059 ◽

2018 ◽

Vol 28 (suppl_1) ◽

Author(s):

R Raghavan ◽

A Farooqi ◽

K Jutlla ◽

N Patel ◽

B Desai ◽

...

Keyword(s):

Ethnic Minority ◽

Health Research ◽

Good Practice ◽

Research Participation ◽

The Uk

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Insights From African American Older Adults on Brain Health Research Engagement: “Need to See the Need”

Journal of Applied Gerontology ◽

10.1177/0733464820902002 ◽

2020 ◽

pp. 073346482090200

Author(s):

Shoshana H. Bardach ◽

Markeda Yarbrough ◽

Charlene Walker ◽

Doris L. Alfred ◽

Eseosa Ighodaro ◽

...

Keyword(s):

Older Adults ◽

African American ◽

Health Research ◽

Research Participation ◽

Elevated Risk ◽

Brain Health ◽

Research Engagement ◽

Disease Research ◽

Dementia Research ◽

Barriers And Opportunities

African Americans (AAs) have an elevated risk of developing dementia, yet are underrepresented in clinical research. This project uses a community-engaged photovoice approach to add to existing understanding of barriers and facilitators to AA participation in Alzheimer’s disease research and identify strategies to enhance engagement. Three AA research advocates served as community facilitators to identify and guide groups of AA adults through an eight to nine session photovoice project. Group sessions involved discussions and sharing of images pertaining to various prompts in the area of brain health and research participation. Sessions were audiotaped and transcribed verbatim. Participants identified three categories of barriers to AA research participation: (a) Mistrust, (b) avoidance and fear of acknowledging problems, and (c) seeing the risks of research but not the need. Participants shared suggestions and approaches for ameliorating each of these barriers. This process revealed unique insights into barriers and opportunities for increasing AA engagement in aging and dementia research.

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