How Patients and Visitors to an Urban Emergency Department View Clinical Research

Wilets, Ilene; O'Rourke, Maria C.; Nassisi, Denise

doi:10.1111/j.1553-2712.2003.tb00578.x

Cited by 26 publications

(28 citation statements)

References 6 publications

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“…There has been some evidence in studies of this phenomenon. For example, others have shown how research participation in emergency settings is regarded as having direct health benefits, in some cases over and above what the health care system can offer [19-21,45,46]. Our analysis also revealed how people used research as a strategy to self-manage their health conditions.…”

Section: Discussionmentioning

confidence: 69%

Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada

Townsend

Cox

2013

BMC Med Ethics

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BackgroundAlthough there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies.MethodsThis is a qualitative exploratory study informed by grounded theory strategies. Thirty-nine participants recruited in British Columbia and Manitoba, Canada, who had taken part in a diverse range of health research studies participated in semi-structured interviews. Participants described their experiences of health research participation including motivations for volunteering. Interviews were recorded, transcribed, and analyzed using constant comparisons. Coding and data management was supported by Nvivo-7.ResultsA predominant theme to emerge was 'participation in health research to access health services.’ Participants described research as ways of accessing: (1) Medications that offered (hope of) relief; (2) better care; (3) technologies for monitoring health or illness. Participants perceived standard medical care to be a “trial and error” process akin to research, which further blurred the boundaries between research and treatment.ConclusionsOur findings have implications for recruitment, informed consent, and the dichotomizing of medical/health procedures as either research or treatment. Those with low health status may be more vulnerable to potential coercion, suggesting the need for a more cautious approach to obtaining consent. Our findings also indicate the need for boundary work in order to better differentiate treatment and research. It is important however to acknowledge a categorical ambiguity; it is not always the case that people are misinformed about the possible benefits of research procedures (i.e., therapeutic misconception); our participants were aware that the primary purpose of research is to gain new knowledge yet they also identified a range of actual health benefits arising from their participation.

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Section: Discussionmentioning

confidence: 69%

Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada

Townsend

Cox

2013

BMC Med Ethics

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“…Corbie-Smith, Moody-Ayers, & Thrasher, 2004; G. M. Corbie-Smith, 2004; Keyzer et al, 2005; LaVeist, Nickerson, & Bowie, 2000; UyBico, Pavel, & Gross, 2007; Wilets, O’Rourke, & Nassisi, 2003; Wipke-Tevis & Pickett, 2008). The burden of research participation is much heavier on low-income minorities than it is on middle-class Whites (Mattson, Curb, & McArdle, 1985).…”

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confidence: 99%

Recruitment and Retention Strategies for Minority or Poor Clinical Research Participants: Lessons From the Healthy Aging in Neighborhoods of Diversity Across the Life Span Study

et al. 2011

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Purpose of the study: Investigating health disparities requires studies designed to recruit and retain racially and socioeconomically diverse cohorts. It is critical to address the barriers that disproportionately affect participation in clinical research by minorities and the socioeconomically disadvantaged. This study sought to identify and rectify these barriers to recruit and retain a biracial (African American and non-Hispanic White) and socioeconomically diverse cohort for a longitudinal study. Design and Method: The Healthy Aging in Neighborhoods of Diversity across the Life Span study is a 20-year longitudinal examination of how race and socioeconomic status influence the development of age-related health disparities. One goal was to create a multifactorial recruitment and retention strategy. The recruitment paradigm targeted known barriers and identified those unique to the study's urban environment. The retention paradigm mirrored the recruitment plan but was based on specifically developed approaches. Results: This cohort recruitment required attention to developing community partnerships, designing the research study to meet the study hypotheses and to provide benefit to participants, providing a safe community-based site for the research and creating didactics to develop staff cultural proficiency. These efforts facilitated study implementation and enhanced recruitment resulting in accrual of a biracial and socioeconomically diverse cohort of 3,722 participants. Implications: Recruiting and retaining minority or poor research participants is challenging but possible. The essential facets include clear communication of the research hypothesis, focus on providing a direct benefit for participants, and selection of a hypothesis that is directly relevant to the community studied

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“…Qualitative methods are well suited to examine complex phenomena and to understand multiple viewpoints, 14 and these methods have been used increasingly in healthcare research, including emergency medicine. [15][16][17] Study setting and population The population of interest for this study included members of IRBs at institutions conducting research in the US, represented by the membership in Applied Research Ethics National Association (ARENA), the sole professional society for IRB members in the US. Respondents were purposely selected to represent different regions of the country, IRBs at both academic and non-academic centres, IRB members, IRB chairs and both genders, in order to include the full range of IRB members' perspectives and experiences.…”

Section: Methodsmentioning

confidence: 99%

A qualitative study of institutional review board members’ experience reviewing research proposals using emergency exception from informed consent

et al. 2007

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Background: Emergency exception to informed consent regulation was introduced to provide a venue to perform research on subjects in emergency situations before obtaining informed consent. For a study to proceed, institutional review boards (IRBs) need to determine if the regulations have been met. Aim: To determine IRB members' experience reviewing research protocols using emergency exception to informed consent. Methods: This qualitative research used semistructured telephone interviews of 10 selected IRB members from around the US in the fall of 2003. IRB members were chosen as little is known about their views of exception to consent, and part of their mandate is the protection of human subjects in research. Interview questions focused on the length of review process, ethical and legal considerations, training provided to IRB members on the regulations, and experience using community consultation and notification. Content analysis was performed on the transcripts of interviews. To ensure validity, data analysis was performed by individuals with varying backgrounds: three emergency physicians, an IRB member and a layperson. Results: Respondents noted that: (1) emergency exception to informed consent studies require lengthy review; (2) community consultation and notification regulations are vague and hard to implement; (3) current regulations, if applied correctly, protect human subjects; (4) legal counsel is an important aspect of reviewing exception to informed-consent protocols; and (5) IRB members have had little or no formal training in these regulations, but are able to access materials needed to review such protocols. Conclusions: This preliminary study suggests that IRB members find emergency exception to informed consent studies take longer to review than other protocols, and that community consultation and community notification are the most difficult aspect of the regulations with which to comply but that they adequately protect human subjects.

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How Patients and Visitors to an Urban Emergency Department View Clinical Research

Abstract: Although many individuals tend to view clinical research favorably, a level of medical mistrust exists. The concerns about human experimentation and the limited understanding of human subject protections underscore the need to improve informed consent.

Cited by 26 publications

References 6 publications

Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada

Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada

Recruitment and Retention Strategies for Minority or Poor Clinical Research Participants: Lessons From the Healthy Aging in Neighborhoods of Diversity Across the Life Span Study

A qualitative study of institutional review board members’ experience reviewing research proposals using emergency exception from informed consent

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