A Qualitative Study of Recruitment Barriers, Motivators, and Community-Based Strategies for Increasing Clinical Trials Participation among Rural and Urban Populations

Friedman, Daniela B.; Foster, Caroline; Bergeron, Caroline D.; Tanner, Andrea; Kim, Sei‐Hill

doi:10.4278/ajhp.130514-qual-247

Cited by 92 publications

(90 citation statements)

References 40 publications

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“…However, in the context of consent to participate in research, a previous systematic review that found no difference in consent rates between minority--African Americans, Hispanics-- and non-Hispanic whites [51]. While we did not find health status to be a predictor, other studies have found that patients with poorer health are more likely to consent to a research study [52, 53]. …”

Section: Discussioncontrasting

confidence: 83%

Factors affecting willingness to share electronic health data among California consumers

et al. 2017

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BackgroundRobust technology infrastructure is needed to enable learning health care systems to improve quality, access, and cost. Such infrastructure relies on the trust and confidence of individuals to share their health data for healthcare and research. Few studies have addressed consumers’ views on electronic data sharing and fewer still have explored the dual purposes of healthcare and research together. The objective of the study is to explore factors that affect consumers’ willingness to share electronic health information for healthcare and research.MethodsThis study involved a random-digit dial telephone survey of 800 adult Californians conducted in English and Spanish. Logistic regression was performed using backward selection to test for significant (p-value ≤ 0.05) associations of each explanatory variable with the outcome variable.ResultsThe odds of consent for electronic data sharing for healthcare decreased as Likert scale ratings for EHR impact on privacy worsened, odds ratio (OR) = 0.74, 95% CI [0.60, 0.90]; security, OR = 0.80, 95% CI [0.66, 0.98]; and quality, OR = 0.59, 95% CI [0.46–0.75]. The odds of consent for sharing for research was greater for those who think EHR will improve research quality, OR = 11.26, 95% CI [4.13, 30.73]; those who value research benefit over privacy OR = 2.72, 95% CI [1.55, 4.78]; and those who value control over research benefit OR = 0.49, 95% CI [0.26, 0.94].ConclusionsConsumers’ choices about electronically sharing health information are affected by their attitudes toward EHRs as well as beliefs about research benefit and individual control. Design of person-centered interventions utilizing electronically collected health information, and policies regarding data sharing should address these values of importance to people. Understanding of these perspectives is critical for leveraging health data to support learning health care systems.

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Section: Discussioncontrasting

confidence: 83%

Factors affecting willingness to share electronic health data among California consumers

et al. 2017

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“…5 Key issues that may detrimentally affect rural residents' participation in research include cultural sensitivity, geographic challenges (e.g., distance and isolation), misperceptions of research, and lack of opportunities to participate in research. [6][7][8] Furthermore, prior research suggests that participation in health research is disproportionate across races and ethnicities. While racial/ethnic minorities constitute a third of the US population, most published studies show that they remain largely underrepresented in health research.…”

mentioning

confidence: 99%

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

McElfish

Long

Selig

et al. 2018

Clinical Translational Sci

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Prior research suggests that rural and minority communities participate in research at lower rates. While rural and minority populations are often cited as being underrepresented in research, population‐based studies on health research participation have not been conducted. This study used questions added to the 2015 Behavioral Risk Factor Surveillance System to understand factors associated with i) health research participation, ii) opportunities to participate in health research, and iii) willingness to participate in health research from a representative sample (n = 5,256) of adults in Arkansas. Among all respondents, 45.5% would be willing to participate in health research if provided the opportunity and 22.1% were undecided. Only 32.4% stated that they would not be willing to participate in health research. There was no significant difference in participation rates for rural or racial/ethnic minority communities. Furthermore, racial/ethnic minority respondents (Black or Hispanic) were more likely to express their willingness to participate.

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“…We employed a mixed methods approach using focus groups [1,12] and a telephone survey [2,3]. First we conducted 19 focus groups and eight interviews statewide with a total of 212 participants.…”

Section: Phase Ii: We Assessed Adults' Current Ct Knowledge and Beliementioning

confidence: 99%

Improving our messages about research participation: a community-engaged approach to increasing clinical trial literacy

Friedman

Tanner²,

Kim³

et al. 2014

Clinical Investigation

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A Qualitative Study of Recruitment Barriers, Motivators, and Community-Based Strategies for Increasing Clinical Trials Participation among Rural and Urban Populations

Cited by 92 publications

References 40 publications

Factors affecting willingness to share electronic health data among California consumers

Factors affecting willingness to share electronic health data among California consumers

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

Improving our messages about research participation: a community-engaged approach to increasing clinical trial literacy

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