Strategies for Ensuring Diversity, Inclusion, and Meaningful Participation in Clinical Trials Proceedings of a Workshop (2016) / Chapter Skim
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4 Recruitment and Retention Issues: Patient, Provider, Institutional, and System Barriers
4 Recruitment and Retention Issues: Patient, Provider, Institutional, and System Barriers
Pages 29-40
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From page 29... ...
But many factors also involve health care providers and systems, communities, businesses, and governments. Three speakers described some of the ways that components of the clinical trials ecosystem can work together to influence these factors.
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. Benefit Recruitment Research Physical Psychological Economic Familial Social Involvement or Participation Retention Burden FIGURE 4-1 A variety of factors affect decisions involving participation in clinical trials.
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They may worry about whether they will continue to receive good care after the trial ends. Ulrich and her colleagues compiled a list of issues that increase the burden of research participation, in order of increasing frequency among patients: • It is costing me money out of pocket.
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From page 32... ...
Doctor communication and nurse communication were both positively correlated with the patient being informed, which "speaks to the importance of interdisciplinarity and the role of teams with research," said Ulrich. Finally, Ulrich defined interdisciplinary integrity as a commitment on the part of the clinical and research teams to provide honest and clear information about the benefits and burdens of clinical trials in an atmosphere that respects the rights of human participants as active partners in decision making.
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From page 33... ...
Stakeholders have many different perspectives on clinical trials, Chen observed, including patients, researchers, health care providers, IRBs, and families. But research shows that providers are the most influential factor in patient enrollment in clinical trials.
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From page 34... ...
And it requires transparency in the form of culturally appropriate and ethnically specific outreach and education, continuous community input and feedback, and community ownership. As an example, Chen cited the Thousand Asian American Study, which is "all based on trust because it was based on a track record of earned respect." Educational sessions are available using a brochure and video.
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For example, Ellen worked for many years on syphilis elimination in Baltimore, Maryland, which required continually addressing concerns about the uskegee syphilis experiments. Clinical trials also have the poten T tial to stigmatize communities by identifying and associating them with particular problems.
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• The Florida Department of Health will register Our Kids of Miami Dade and Monroe as HIV testing sites for youth in foster care. • The Hillsborough County Health and Human Services Ryan White Administration will amend guidelines to exempt minors with HIV from providing income eligibility documentation.
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• Clinical trials depend on the people who volunteer to participate in the research. The educational program also described major types of clinical research (see Table 4-1)
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• Clinical research helps us understand what these differences are and why they happen. The third project was known as the Community Impact Monitoring Plan, which had the goal of combining ongoing assessments from the community, particularly from those members most affected by the research, with assessments from the research group and established community advisors to provide a comprehensive view of the effect the research is having on the community.
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From page 39... ...
IMMIGRANT POPULATIONS One of the topics discussed during the question-and-answer session involved the particular challenges of enrolling immigrant populations in clinical trials. Asian populations are diverse in terms of language, Chen said, which requires working with translators for those languages.
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