Voices of Patient Populations in Clinical Research and Care

  • 13 Dec 2022
  • 7:00 PM - 9:00 PM
  • Online via Zoom (must register to receive log in information)


Registration is closed

IMPORTANT INFORMATION: This talk will be presented online using Zoom. Registration is required before 3:00 pm on Tuesday, December 13, 2022. Log in information for Zoom will be emailed to those who have registered with their registration confirmation as well as by 3:00 pm on Tuesday, December 13, 2022.

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Date: Tuesday, 13 December 2022
Location:  Online meeting via Zoom
Time: 7:00 pm

YouTube Link: https://youtu.be/qPdzbu0U-MY

First, here is a special message from the WAPA Program Committee (PC).  The PC has been bringing thoughtful, interesting, and even provocative programs almost monthly to members and others near and far.  As of now, we plan to remain on Zoom, perhaps moving to a hybrid format at a later date. We need a couple of members to join the PC who are available to provide technical support on meeting nights that vary between the 1st or 2nd Tuesday or Wednesday of the month, usually October through May.  The skills are rudimentary and training will be provided. If interested, please contact the PC Chair, Martha Hare directly at Mtaibe@verizon.net and identify yourself clearly to avoid the spam folder. And now back to our upcoming program!

Title: Voices of Patient Populations in Clinical Research and Care

Speakers and Talk Descriptions: 

Victoria X Danner, MAA, PMP, Rainmakers Strategic Solutions LLC

From Subject to Expert: Patients as Partners in Health Services Research. Recent patient and family engagement initiatives within the Centers for Medicare and Medicaid Services (CMS) represent a growing partnership between government agencies and patient and family caregiver communities. The latter group has increased influence and agency in the direction of health services research. Patients and family caregivers are regarded as research partners whose personal perspectives and experiences with chronic conditions are valued as expertise that can and do change the outcome of studies. This demonstrates the changing role of patients and family caregivers in health services research and has future implications for healthcare delivery and policy for CMS.


Kathy Mann Koepke, PhD, Program Director. National Institutes of Health (NIH), Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), Child Development and Behavior Branch

Inclusion of Persons with Disability in Practice and in Research

Persons with disabilities are historically the first and the only universally minoritized population.  Throughout history, “ableism” and the medical model of disability have prevailed; those with disability are the hidden, forgotten, “to be eliminated” humans in any population.  This view is in direct tension with the reality that everyone experiences some disability at some point in their life and that disability is contextual and culturally created. In the US, the disabled are the largest and most rapidly growing minority demographic, yet the least studied and undercounted. The first US reference to persons with disability as a demographic group first appeared in the Healthy 2010 agenda, yet even today, not all federal components recognize this demographic.  Surprisingly, even within the DHHS, not all components are in agreement.  This lack of inclusion in modern medical practice and the biomedical and behavioral research system result in significant adverse consequences for society as a whole.


About the speakers:

Victoria X. Danner MA, PMP is a consultant and applied medical anthropologist with nearly a decade of experience in qualitative research, project management, program development, and communication. She has led projects for several organizations that include Centers for Medicare and Medicaid Services, the Pew Research Center, National Cancer Institute, Lupus Foundation, and others. She has dedicated her career to providing consultation and independent research to advocate for patient-centered and engaged research for the betterment of healthcare.

Kathy Mann Koepke PhD is a cognitive neuroscientist who has studied, as well as experienced first-hand, the challenges of ableism and “disability,” including the significant disparities and inequities persons with different abilities experience in all aspects of life – in work, healthcare, social interactions, and recreation. Early in her career, while a faculty member at Washington University-St. Louis Medical School she managed one of the largest federally funded Alzheimer’s Disease Research Centers (ADRC), during which time she created the world’s first free internationally awarded educational disease-specific online support network (ALZHEIMERS) for formal and informal caregivers, in order to increase inclusion of difficult-to-reach isolated populations. In 2001, Dr. Mann Koepke joined the National Institutes of Health (NIH).  Now at NICHD/NIH, her program portfolio includes child development and learning disabilities. In addition, she provides expertise on disability issues to NIH and multiple other federal agencies and has received multiple notable awards related to this service, including the NIH Yvonne Thompson Maddox Award for Equity, Diversity, and Inclusion in 2019. She founded the NIH ABILITIES Employees Resource Group (ERG) and listserv and has been an active member and served in leadership roles in numerous national and regional organizations that support persons with a wide range of disabilities and continues to create and lead innovative strategies to support persons challenged by illness-related dysfunction and/or ableism.

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