A survey of researchers using a consent policy for cognitively impaired human research subjects
UMass Chan AffiliationsDepartment of Psychiatry
KeywordsAcademies and Institutes
Ethics Committees, Research
Evaluation Studies as Topic
*Mentally Disabled Persons
Patient Care Team
Health Services Administration
Health Services Research
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"Our lab is the community": Defining essential supporting infrastructure in engagement researchNease, Donald E. Jr.; Burton, Dee; Cutrona, Sarah L.; Edmundson, Lauren; Krist, Alex H.; Laws, Michael Barton; Tamez, Montelle (2018-08-01)Introduction: Effective patient engagement is central to patient-centered outcomes research. A well-designed infrastructure supports and facilitates patient engagement, enabling study development and implementation. We sought to understand infrastructure needs from recipients of Patient-Centered Outcomes Research Institute (PCORI) pilot grant awards. Methods: We surveyed recipients of PCORI pilot project awards on self-perceived strengths in engagement infrastructure through PCORI's Ways of Engaging-Engagement Activity Tool survey, and interviewed leaders of 8 projects who volunteered as exemplars. Descriptive statistics summarized the survey findings. We conducted a thematic analysis of the interview transcripts. Results: Of the 50 surveyed pilots, 22 answered the engagement infrastructure questions (44% response rate). Survey and interview findings emphasized the importance of committed institutional leadership, ongoing relationships with stakeholder organizations, and infrastructure funding through Clinical and Translational Science Awards, PCORI, and institutional discretionary funds. Conclusions: These findings highlight the importance of and how to improve upon existing institutional infrastructure.
Training in the Conduct of Population-Based Multi-Site and Multi-Disciplinary Studies: the Cancer Research Network's Scholars ProgramBuist, Diana S. M.; Field, Terry S.; Banegas, Matthew P.; Clancy, Heather A.; Doria-Rose, V. Paul; Epstein, Mara M.; Greenlee, Robert T.; McDonald, Sarah; Nichols, Hazel B.; Pawloski, Pamala A.; et al. (2015-10-22)Expanding research capacity of large research networks within health care delivery systems requires strategically training both embedded and external investigators in necessary skills for this purpose. Researchers new to these settings frequently lack the skills and specialized knowledge conducive to multi-site and multi-disciplinary research set in delivery systems. This report describes the goals and components of the Cancer Research Network (CRN) Scholars Program, a 26-month training program developed to increase the capacity for cancer research conducted within the network's participating sites, its progression from training embedded investigators to a mix of internal and external investigators, and the content evolution of the training program. The CRN Scholars program was launched in 2007 to assist junior investigators from member sites develop independent and sustainable research programs within the CRN. Resulting from CRN's increased emphasis on promoting external collaborations, the 2013 Scholars program began recruiting junior investigators from external institutions committed to conducting delivery system science. Based on involvement of this broader population and feedback from prior Scholar cohorts, the program has honed its focus on specific opportunities and issues encountered in conducting cancer research within health care delivery systems. Efficiency and effectiveness of working within networks is accelerated by strategic and mentored navigation of these networks. Investing in training programs specific to these settings provides the opportunity to improve multi-disciplinary and multi-institutional collaboration, particularly for early-stage investigators. Aspects of the CRN Scholars Program may help inform others considering developing similar programs to expand delivery system research or within large, multi-disciplinary research networks.
Building Capacity in Health Disparities ResearchFouad, Mona (2019-03-22)Mona Fouad, MD, MPH is Professor of Medicine, Director of the Division of Preventive Medicine, and Senior Associate Dean for Diversity and Inclusion in the School of Medicine at the University of Alabama at Birmingham, and Founding Director of the UAB Minority Health and Health Disparities Research Center. She is recognized nationally as a leader in health disparities research and served as a member of the National Institutes of Health (NIH) National Advisory Council on Minority Health and Health Disparities from 2008-2012. In 2017, Dr. Fouad was elected a member of the National Academy of Medicine. She obtained her MD from Alexandria University School of Medicine in Alexandria, Egypt, and her MPH from the University of Alabama at Birmingham School of Public Health. Dr. Fouad’s career has focused on the health of minority and underserved populations, including efforts to increase involvement of special and underrepresented populations in research. She serves as PI of the NIMHD U54 Obesity Health Disparities Research Center (OHDRC), previously funded since 2003 as an NIMHD P60 Center of Excellence. The OHDRC focuses on the theme of obesity and obesity-related health disparities across the Life Course. Dr. Fouad has contributed to the science of health disparities through major studies to identify variability in cancer care and outcomes based on race, gender, and age. She has developed nationally emulated models in recruitment and retention of minorities in clinical trials and innovative community-based approaches to reducing racial disparities in breast and cervical cancer. She has been the driving force behind interdisciplinary research efforts for understanding problems related to cancer screening and cancer risk factors in the Deep South. Her work in translating science into practice has improved health outcomes in minority and other vulnerable populations. As a direct result of her research projects, racial disparities in breast cancer screening in Alabama Black Belt counties were virtually eliminated, as were disparities in access to cancer care. Dr. Fouad has also played a prominent leadership role, both regionally and nationally, in promoting diversity in medical education. Dr. Fouad has led in the efforts to promote minority students, researchers, and leaders through joint programs with Historically Black Colleges and Universities (HBCUs) and other minority-serving academic institutions. She serves as PI of the NIDDK-funded UAB STEP-UP: Promoting Diversity through Mentored Research Experiences, whose goal is to enhance the diversity of the nation’s research workforce by providing mentored research training to promising undergraduate students from diverse backgrounds underrepresented in biomedical, clinical and behavioral research. In this presentation, Dr. Fouad will review the history of health disparities and health disparities research, and highlight community-based projects that address health disparities.