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

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.

scholarly journals Asian Americans are less willing than other racial groups to participate in health research

2019 ◽  
Vol 3 (2-3) ◽  
pp. 90-96
Author(s):  
Yiyang Liu ◽  
Amy Elliott ◽  
Hal Strelnick ◽  
Sergio Aguilar-Gaxiola ◽  
Linda B. Cottler
Keyword(s):  
Ethnic Groups ◽  
Asian Americans ◽  
Health Research ◽  
Research Participation ◽  
Lower Amount ◽  
Racial Groups ◽  
Willingness To Participate ◽  
Community Members ◽  
Study Results ◽  
Racial Ethnic

AbstractBackground:Asian Americans constitute 5% of the U.S. population. Their willingness to participate in research is important to examine because it influences participation rates and the representativeness of study results.Methods:A total of 17,339 community members participated from six diverse Clinical and Translational Award (CTSA) sites. Community members were asked about their willingness to volunteer for eight different types of health research, their expectation of monetary compensation for research participation, their trust in research and researchers, their preferred language to receive health information, and their socio-demographic background. We examined Asian Americans’ willingness to participate in various types of health research studies and compared their perceptions with other racial/ethnic groups (i.e., Asian n = 485; African-American n = 9516; Hispanic/Latino n = 1889; Caucasian n = 4760; and other minority n = 689).Results:Compared to all other racial/ethnic groups, Asian Americans were less willing to participate in all eight types of health research. However, Asian Americans reported a lower amount of fair compensation for research participation than African-Americans and Hispanics/Latinos but were as likely to trust researchers as all other racial/ethnic groups.Conclusion:Asian Americans are less willing to participate in health research than other racial/ethnic groups, and this difference is not due to dissatisfaction with research compensation or lower trust in researchers. Lack of trust in research and language barriers should be addressed to improve representativeness and generalizability of all populations in research.

scholarly journals 2520

2017 ◽  
Vol 1 (S1) ◽  
pp. 82-82
Author(s):  
Meghan Spiroff ◽  
Lisa Connally ◽  
Anita Johnson ◽  
Aalap Doshi ◽  
Patricia Piechowski
Keyword(s):  
Clinical Trials ◽  
Best Practices ◽  
Health Research ◽  
Participant Recruitment ◽  
Gender And Age ◽  
Study Population ◽  
Gender And Age Differences ◽  
The University ◽  
Racial Ethnic ◽  
Research Studies

OBJECTIVES/SPECIFIC AIMS: Across the Clinical and Translational Science Award (CTSA) Consortium, participant recruitment into clinical trials is essential to advance science. Without proper participant recruitment, clinical trials do not result in gains in scientific knowledge, wastes time, funds, and other resources (Mahon et al., 2015). METHODS/STUDY POPULATION: Participant recruitment programs across the consortium are inconsistent in staffing, program services, and program goals. The participant recruitment program at the University of Michigan’s (U-M) Michigan Institute for Clinical & Health Research (MICHR) provides expertise, tools, and resources to facilitate participant recruitment in clinical and health research studies. RESULTS/ANTICIPATED RESULTS: We will explain our program infrastructure, staffing, services, and discuss how we maintain an engaged registry with over 27,000 participants interested in research studies at U-M. DISCUSSION/SIGNIFICANCE OF IMPACT: Proper recruitment into clinical trials results in findings that are relevant for genetic, cultural, linguistic, racial/ethnic, gender, and age differences (Cottler et al., 2013). We hope to share our best practices that aid in the development and success of participant recruitment across the CTSA Consortium.

scholarly journals INTEREST GROUP SESSION—PATIENT/PERSON ENGAGEMENT IN RESEARCH INTEREST GROUP (PPER-IG): STRENGTH IN AGE: ENGAGING OLDER ADULTS AS HEALTH RESEARCHERS THROUGH COMMUNITY-BASED PARTNERSHIPS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S404-S404
Author(s):  
Silvia Sörensen ◽  
Rebecca S Allen ◽  
Reza Yousefi Nooraie
Keyword(s):  
Older Adults ◽  
Interest Group ◽  
Health Research ◽  
Deep South ◽  
University Of Alabama ◽  
Community Members ◽  
Patient Centered ◽  
Community Stakeholders ◽  
Research Findings ◽  
The University

Abstract The lack of clear translation of health research to improving older under-served patients’ lives presents a serious problem. Studies of aging rarely include the older adults themselves in the process of conceptualizing questions, implementing the research, and applying and evaluating the results. Lack of input particularly from marginalized and minority older adults may compromise the relevance and accuracy of health research findings. In this symposium, we present the design and evaluation of two projects funded by the Patient-Centered Outcomes Research Institute (PCORI), in which older adults are trained to understand research language, culture, and methods, and are subsequently incorporated into research projects in a variety of roles. Silvia Sörensen will describe the “Engaging Older Adult Learners as Health Researchers” (ENGOAL) in Rochester, NY. This program provides six months of weekly classes and 4-6 months of research apprenticeships for older adults. Dorine Otieno and Kate Kondolf will describe evaluation results from both quantitative and qualitative analyses. Rebecca Allen will describe the design and implementation of “Sharing Opinions and Advice about Research (SOAR) in the Deep South,” a partnership of The University of Alabama with community stakeholders from Sumter and Holt County to recruit and train community members to assist in the formulation of research questions based on the needs of their communities. Allen and Dragan will present the evaluation results from this project with regard to implementation and graduate education. Reza Yousefi-Nooraie will synthesize the insights from these projects and add the perspective of a social network analyst.

Diversifying Recruitment Registries: Considering Neighborhood Health Metrics

2021 ◽  
pp. 1-7
Author(s):  
J.D. Grill ◽  
A. Kind ◽  
D. Hoang ◽  
D.L. Gillen
Keyword(s):  
Clinical Research ◽  
Research Participation ◽  
University Of California ◽  
Area Deprivation ◽  
Willingness To Participate ◽  
Demographic Differences ◽  
Full Spectrum ◽  
Disadvantaged Neighborhoods ◽  
On Line ◽  
The University

BACKGROUND: Disparities in clinical research participation perpetuate broader health disparities. Recruitment registries are novel tools to address known challenges in accrual to clinical research. Registries may accelerate accrual, but the utility of these tools to improve generalizability is unclear. Objective: To examine the diversity of a local on-line recruitment registry using the Area Deprivation Index (ADI), a publicly available metric of neighborhood disadvantage. Design: Retrospective analysis. Setting: Data were collected in the University of California Irvine Consent-to-Contact Registry. Participants: We categorized N=2,837 registry participants based on the ADI decile (collapsed into quintiles) using a state-based rankings. Measurements: We examined the proportion of enrollees per ADI quintile and quantified the demographics of these groups. We assessed willingness to participate in studies involving unique research procedures among the ADI groups. Results: Although registry enrollees represented the full spectrum of the ADI, they disproportionately represented less disadvantaged neighborhoods (lowest to highest quintiles: 42%, 30%, 15%, 6%, 7%). Compared to participants from less disadvantaged neighborhoods, participants from more disadvantaged neighborhoods were more often female, of non-white race, and Hispanic ethnicity. Despite demographic differences, ADI groups were observed to have similar willingness to participate in research studies. Conclusions: People from more disadvantaged neighborhoods may be underrepresented in recruitment registries, increasing the risk that they will be underrepresented when using these tools to facilitate prospective recruitment to clinical research. Once enrolled in registries, participants from more disadvantaged neighborhoods may be equally willing to participate in research. Efforts to increase representation of participants from disadvantaged neighborhoods in registries could be an important first step toward increasing the generalizability of clinical research.

scholarly journals Adapting the buying funnel model of consumer behavior to the design of an online health research recruitment tool

2017 ◽  
Vol 1 (4) ◽  
pp. 240-245
Author(s):  
Aalap Doshi ◽  
Lisa Connally ◽  
Meghan Spiroff ◽  
Anita Johnson ◽  
George A. Mashour
Keyword(s):  
Consumer Behavior ◽  
Health Research ◽  
Digital Health ◽  
Research Participation ◽  
Annual Average ◽  
Web Based ◽  
Research Recruitment ◽  
Randomized Design ◽  
The University ◽  
Recruitment Tool

IntroductionUMHealthResearch is the University of Michigan’s digital health research recruitment platform. It allows health researchers to connect efficiently with potentially eligible volunteers.MethodsIn 2013, the UMHealthResearch team strategically adapted a consumer behavior model, the buying funnel, to create the Digital Health Research Participation Funnel. The Digital Health Research Participation Funnel was then used to design a more active way for potential participants to volunteer for research studies through UMHealthResearch.ResultsIn the 5 years before the redesign (2007–2012), an average of 1844 new accounts were created every year, whereas in the completed years after the redesign (2013–2016) the annual average improved to 3906, an increase of 111%.ConclusionAlthough a randomized design was not possible in this instance, these preintervention and postintervention data suggest that the focus on user experience is an effective strategy for improving web-based research recruitment platforms.

scholarly journals Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey

PLoS ONE ◽  
2021 ◽  
Vol 16 (4) ◽  
pp. e0249141
Author(s):  
Caroline Brall ◽  
Claudia Berlin ◽  
Marcel Zwahlen ◽  
Kelly E. Ormond ◽  
Matthias Egger ◽  
...  
Keyword(s):  
Biological Samples ◽  
Health Research ◽  
Data Privacy ◽  
Large Scale ◽  
Health Sector ◽  
Research Participation ◽  
Public Understanding ◽  
Willingness To Participate ◽  
Related Data ◽  
Personalized Health

This paper reports survey findings on the Swiss public’s willingness, attitudes, and concerns regarding personalized health research participation by providing health information and biological material. The survey reached a sample of 15,106 Swiss residents, from which we received 5,156 responses (34.1% response rate). The majority of respondents were aware of research using human biological samples (71.0%) and held a positive opinion towards this type of research (62.4%). Of all respondents, 53.6% indicated that they would be willing to participate in a personalized health research project. Willingness to participate was higher in younger, higher educated, non-religious respondents with a background in the health sector. Respondents were more willing to provide ‘traditional’ types of health data, such as health questionnaires, blood or biological samples, as opposed to social media or app-related data. All respondents valued the return of individual research results, including risk for diseases for which no treatment is available. Our findings highlight that alongside general positive attitudes towards personalized health research using data and samples, respondents have concerns about data privacy and re-use. Concerns included potential discrimination, confidentiality breaches, and misuse of data for commercial or marketing purposes. The findings of this large-scale survey can inform Swiss research institutions and assist policymakers with adjusting practices and developing policies to better meet the needs and preferences of the public. Efforts in this direction could focus on research initiatives engaging in transparent communication, education, and engagement activities, to increase public understanding and insight into data sharing activities, and ultimately strengthen personalized health research efforts.

scholarly journals Facilitators and barriers to successful recruitment into a large comparative effectiveness trial: a qualitative study

2019 ◽  
Vol 8 (10) ◽  
pp. 815-826
Author(s):  
Stephanie Behringer-Massera ◽  
Terysia Browne ◽  
Geny George ◽  
Sally Duran ◽  
Andrea Cherrington ◽  
...  
Keyword(s):  
Comparative Effectiveness Research ◽  
Comparative Effectiveness ◽  
Minority Groups ◽  
Research Participation ◽  
Effectiveness Research ◽  
Perceptions Of Risk ◽  
Telephone Interviews ◽  
Successful Recruitment ◽  
Facilitators And Barriers ◽  
Research Studies

Background: Recruitment of participants into research studies, especially individuals from minority groups, is challenging; lack of diversity may lead to biased findings. Aim: To explore beliefs about research participation among individuals who were approached and eligible for the GRADE study. Methods: In-depth qualitative telephone interviews with randomized participants (n = 25) and eligible individuals who declined to enroll (n = 26). Results: Refusers and consenters differed in trust and perceptions of risk, benefits and burden of participation. Few participants understood how comparative effectiveness research differed from other types of trials; however, some features of comparative effectiveness research were perceived as lower risk. Conclusion: We identified facilitators and addressable barriers to participation in research studies.

Community participation in health research: an ethnography from rural Swaziland

2019 ◽  
Vol 35 (1) ◽  
pp. e59-e69 ◽  
Author(s):  
Michelle R Brear ◽  
Karin Hammarberg ◽  
Jane Fisher
Keyword(s):  
Community Participation ◽  
Health Research ◽  
Participant Observation ◽  
Research Participation ◽  
Research Process ◽  
Ethnographic Study ◽  
Community Members ◽  
Research Activities ◽  
Participatory Health Research ◽  
Participation In Research

Summary Community participation in all aspects of health research is widely advocated. However, there is a lack of specificity in reporting what community members actually do, and reported participation is typically limited to discrete research activities. Greater specificity in reporting has potential to clarify how community participation might occur and how it might influence empowerment and research rigour. We conducted an ethnographic study of participatory health research (PHR) in a socio-economically marginalized rural Swazi community. Data about 10 community co-researchers’ participation in research workshops and field work were collected through participant observation over 14 months and analysed using directed content analysis, informed by the Comprehensive Community Participation in Research Framework (CCPRF). The analysis demonstrated that facilitating extensive community participation in PHR is feasible and identified 10 new research process activities in which community members might participate, for inclusion in an expanded CCPRF. We provide examples of how community members might participate in 57/59 expanded CCPRF activities and show that participatory, dialogue-based activities can be effective tools for facilitating research participation in ways that empower individual co-researchers and enhance research rigour. However, our results highlight limitations of community participation related to utilizing research results to inform actions, and empowering communities to control their environments and improve their health.

EARTH SCIENCE FAIR AT THE UNIVERSITY OF CONNECTICUT: HANDS-ON EARTH EDUCATION AND COMMUNITY OUTREACH

2020 ◽  
Author(s):  
Elena Robakiewicz ◽  
◽  
Dawn Beamer ◽  
Dawn Beamer ◽  
Jennifer Cooper Boemmels ◽  
...  
Keyword(s):  
Earth Science ◽  
Community Outreach ◽  
Science Fair ◽  
Hands On ◽  
The University ◽  
University Of Connecticut
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