The willingness to participate in health research studies of individuals with Turkish migration backgrounds: barriers and resources

2012 ◽  
Vol 27 ◽  
pp. S4-S9 ◽  
Author(s):  
D. Dingoyan ◽  
H. Schulz ◽  
M. Mösko
Keyword(s):  
Health Research ◽  
Willingness To Participate ◽  
Research Studies

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 Principles for the production and dissemination of recruitment material for three clinical trials of an online intervention

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Stefan Rennick-Egglestone
Keyword(s):  
Social Media ◽  
Clinical Trials ◽  
Health Research ◽  
Online Intervention ◽  
Ethics Committee ◽  
Promotional Material ◽  
Media Campaigns ◽  
Social Media Platforms ◽  
Ethical Oversight ◽  
Research Studies

AbstractSome health research studies recruit participants through electronic mechanisms such as the placement of messages on social media platforms. This raises questions for ethics committee oversight, since effective social media campaigns might involve the production and dissemination of hundreds of contemporaneous messages. For the Narrative Experiences Online (NEON) study, we have developed nine principles to control the production and dissemination of promotional material. These have been approved by an ethics committee and enable the audit of our recruitment work. We propose that the drafting for approval of recruitment principles by health research studies may, in many cases, strike an appropriate balance between enabling ethical oversight of online recruitment work and the potential burden of message review.

scholarly journals Fast Healthcare Interoperability Resources (FHIR) in a FAIR Metadata Registry for COVID-19 Research

2021 ◽  
Author(s):  
Sophie Anne Ines Klofenstein ◽  
Carina Nina Vorisek ◽  
Aliaksandra Shutsko ◽  
Moritz Lehne ◽  
Julian Sass ◽  
...  
Keyword(s):  
Public Health ◽  
Health Research ◽  
Public Health Research ◽  
International Standards ◽  
Metadata Schema ◽  
Research Communities ◽  
Resource Type ◽  
Research Studies

Adopting international standards within health research communities can elevate data FAIRness and widen analysis possibilities. The purpose of this study was to evaluate the mapping feasibility against HL7® Fast Healthcare Interoperability Resources® (FHIR)® of a generic metadata schema (MDS) created for a central search hub gathering COVID-19 health research (studies, questionnaires, documents = MDS resource types). Mapping results were rated by calculating the percentage of FHIR coverage. Among 86 items to map, total mapping coverage was 94%: 50 (58%) of the items were available as standard resources in FHIR and 31 (36%) could be mapped using extensions. Five items (6%) could not be mapped to FHIR. Analyzing each MDS resource type, there was a total mapping coverage of 93% for studies and 95% for questionnaires and documents, with 61% of the MDS items available as standard resources in FHIR for studies, 57% for questionnaires and 52% for documents. Extensions in studies, questionnaires and documents were used in 32%, 38% and 43% of items, respectively. This work shows that FHIR can be used as a standardized format in registries for clinical, epidemiological and public health research. However, further adjustments to the initial MDS are recommended – and two additional items even needed when implementing FHIR. Developing a MDS based on the FHIR standard could be a future approach to reduce data ambiguity and foster interoperability.

The EQUATOR Network and reporting guidelines: Helping to achieve high standards in reporting health research studies

Maturitas ◽  
2009 ◽  
Vol 63 (1) ◽  
pp. 4-6 ◽  
Author(s):  
Iveta Simera ◽  
David Moher ◽  
John Hoey ◽  
Kenneth F. Schulz ◽  
Douglas G. Altman
Keyword(s):  
Health Research ◽  
Reporting Guidelines ◽  
Equator Network ◽  
High Standards ◽  
Research Studies

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 A systematic literature review of Native American and Pacific Islanders’ perspectives on health data privacy in the United States

2020 ◽  
Vol 27 (12) ◽  
pp. 1987-1998
Author(s):  
Riley Taitingfong ◽  
Cinnamon S Bloss ◽  
Cynthia Triplett ◽  
Julie Cakici ◽  
Nanibaa’ Garrison ◽  
...  
Keyword(s):  
Native American ◽  
Literature Review ◽  
Systematic Literature Review ◽  
Alaska Native ◽  
Health Research ◽  
Data Privacy ◽  
Indigenous Communities ◽  
The United States ◽  
Health Data ◽  
Willingness To Participate

Abstract Background Privacy-related concerns can prevent equitable participation in health research by US Indigenous communities. However, studies focused on these communities' views regarding health data privacy, including systematic reviews, are lacking. Methods We conducted a systematic literature review analyzing empirical, US-based studies involving American Indian/Alaska Native (AI/AN) and Native Hawaiian or other Pacific Islander (NHPI) perspectives on health data privacy, which we define as the practice of maintaining the security and confidentiality of an individual’s personal health records and/or biological samples (including data derived from biological specimens, such as personal genetic information), as well as the secure and approved use of those data. Results Twenty-one studies involving 3234 AI/AN and NHPI participants were eligible for review. The results of this review suggest that concerns about the privacy of health data are both prevalent and complex in AI/AN and NHPI communities. Many respondents raised concerns about the potential for misuse of their health data, including discrimination or stigma, confidentiality breaches, and undesirable or unknown uses of biological specimens. Conclusions Participants cited a variety of individual and community-level concerns about the privacy of their health data, and indicated that these deter their willingness to participate in health research. Future investigations should explore in more depth which health data privacy concerns are most salient to specific AI/AN and NHPI communities, and identify the practices that will make the collection and use of health data more trustworthy and transparent for participants.

scholarly journals Setting up clinical research studies in the National Health Service in England

2016 ◽  
Vol 10 (2) ◽  
pp. 145-147 ◽  
Author(s):  
Jessica Whitburn ◽  
Surjeet Singh ◽  
Prasanna Sooriakumaran
Keyword(s):  
Clinical Trials ◽  
National Health Service ◽  
Health Service ◽  
Research And Development ◽  
Clinical Research ◽  
National Health ◽  
Health Research ◽  
Application Process ◽  
Regulatory Bodies ◽  
Research Studies

Starting and conducting clinical trials in England can be a complicated and time-consuming process. Before your study can begin it is necessary to gain approval from the appropriate regulatory bodies. Prior to March 2016, studies required National Health Service (NHS) permission (also referred to as Research and Development (R&D) approval) obtained via the National Institute for Health Research (NIHR) Coordinated System for gaining NHS Permission (CSP). Since March 2016, a new streamlined system has been introduced with the aim of making it easier to gain regulatory approvals. Now studies must go through the process of Health Research Authority (HRA) approval. In this article we review the process of gaining HRA approval in England. The article is aimed at junior researchers to help them understand the application process, and to give tips on how to succeed in gaining approval.

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