Innovation in Drug Research and Development for Prevalent Chronic Diseases Proceedings of a Workshop (2021) / Chapter Skim
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2 Person-Centered Drug Research and Development
2 Person-Centered Drug Research and Development
Pages 5-14
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From page 5... ...
• "Community engagement is an essential piece in ensuring that we have better access to research for underserved populations and hope that this will help address health care disparities." (Woodahl) • Stakeholders should consider how proposed research projects are of interest and have potential value to the people in the community.
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From page 6... ...
Karen Winkfield, executive director of the Meharry-Vanderbilt Alliance, a strategic partnership between the Meharry Medical College and the Vanderbilt Medical Center, discussed ways to incorporate patient expertise throughout the design and implementation of clinical trials. Erica Woodahl from the University of Montana, who studies genetic variation in indigenous populations, provided insights on the barriers and opportunities for broader access to biomedical research for underserved and unstudied populations.
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From page 7... ...
THE IMPORTANCE OF THE PATIENT VOICE Winkfield argued that a patient-centered approach to clinical trials is vital and offered suggestions for how to incorporate patients' input and expertise throughout the drug R&D process. She spoke about some lessons learned from her work in oncology and health equity that could be broadly applicable for other types of chronic illnesses.
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From page 8... ...
. While Winkfield recognized that part of the challenge in addressing these health disparities is that minorities tend to be underrepresented in clinical trials, she emphasized the need to hear from minority communities to better understand the underlying issues that lead to disparities in engagement in clinical trials.
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From page 9... ...
Additionally, individuals with fewer financial resources may be less likely to take part in clinical trials. She referenced the American Society of Clinical Oncology policy statement on addressing financial barriers to patient participation in clinical trials, which includes a number of recommendations concerning that issue.1 In closing, Winkfield highlighted a paper she and colleagues published in JCO Oncology Practice that offers an actionable framework to address cancer care disparities (Winkfield et al., 2021)
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From page 10... ...
SOURCES: Presented by Erica Woodahl on February 22, 2021, at the Innovation in Drug Research and Development for Prevalent Chronic Diseases workshop; Martin et al., 2019.
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From page 11... ...
. 3 Approving a Moratorium on Genetic Research Studies Conducted Within the Jurisdiction of the Navajo Nation Until Such Time That a Navajo Nation Human Research Code Has Been Amended by the Navajo Nation Council, HSSCAP-20-02 (2002)
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From page 12... ...
A community advisory board meets with the researchers every month to talk about research progress, recruiting, new grant opportunities, and other relevant matters. The researchers have held genetic education workshops to provide opportunities for community advisory board members to learn about genetics and gain some hands-on training.
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From page 13... ...
"You need to also be thinking about that when it comes to the biomarker discovery or therapeutic discovery upstream in the preclinical phase." Mellad offered a brief description of a case study that illustrated a type of disparity that is often overlooked. Pulse oximeters are important devices for monitoring blood oxygen levels, which is particularly important for patients with diseases like chronic obstructive pulmonary disease (COPD)
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From page 14... ...
2021. Development of an actionable framework to address cancer care disparities in medically underserved populations in the United States: Expert round table recommendations.
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