Print
 

NCATS Day 2018: Engaging Patients and Communities for Smart Science

October 31, 2018

Author: Ursula Kahric, Research Assistant, MHRI / Georgetown-Howard Universities Clinical & Translational Science (GHUCCTS)

picture1.jpgOn Friday September 28th, 2018, patients, community partners, researchers, and others gathered at the National Institutes of Health in Bethesda, Maryland for the NCATS Day 2018: Engaging Patients and Communities for Smart Science. This event was hosted by The National Center for Advancing Translational Science (NCATS), which places great value on including diverse patient and community perspectives in the development of health research. NCATS Day was an opportunity for patients, researchers, and other health professionals to discuss challenges faced in health research and how to overcome these challenges through effective patient and community involvement engagement, allowing researchers to learn how to incorporate community input into their work.

Members from the GHUCCTS team were significantly involved in planning for this event and in bringing speakers from our researcher and community network. Florencia Gonzalez, MPH, Including Diverse Populations Co-Director and Community Networks Manager, was an integral member of the NCATS Day Planning Group. GHUCCTS’ panel presenters included Karen Baldi, Volunteer Participant Advisory Board member and MedStar Community Clinical Research Center (MCCRC) participant, Kristi Graves, PhD, Director of Cancer Survivorship Research at GU, and Finie Hunter-Richardson, MPH, Program Manager , HU Department of Community and Family Medicine.  All provided great insight based on their varied experiences in health research. Karen Baldi shared her experience: “Participating in NCATS Day as a community representative gave me the extraordinary opportunity to understand the challenges researchers, activists, patients, and physicians face in getting trials off the ground.  The day also provided me with multiple opportunities to exchange ideas and share strategies to increase participation in clinical trials.  Discussions and panel presentations that addressed compensation and the importance of transparency and communication were of great help and interest.”  

During the presentations on Getting Started on Developing Relationships, Kristi Graves and Laura Logie spoke about important values each partner needs to bring to a community - academic collaboration, such as the importance of investigators ability to listen and building trust with their community partners.  Finie Richardson, a member of our GHUCCTS Community Engagement Core presented during the Sharing Research Results panel discussion. She shared insight about our direct impact on academic-community-based partnerships through our participant advisory board, community advisory board, and pilot funding of community-initiated projects. She highlighted GHUCCTS’ strength in the practical integration of community engagement principles into research.  This includes being transparent with communities, particularly given past wrongs in research among communities of color.  She stated that, “Addressing issues of mistrust is very important even before engaging the community in research or clinical trials.”   

The full-day event also featured interactive activities, including a Patient and Community Engagement Studio Demonstration for which GHUCCTS Staff arranged for participants from the GHUCCTS’ network. Leveraging the GHUCCTS Community Outreach listserv organized by Tonya Bishop, MHRI & GHUCCTS Recruitment Coordinator, we were able to fill the majority of the panel on an expedited timeline. The studio included breakout group discussions during which participants discussed current activities, shared experiences, and developed recommendations to regarding community engagement in clinical research.  Overall, the event provided an opportunity for individuals involved in translational science from a wide range of perspectives to learn from one another and brainstorm ideas to further strengthen patient and community engagement in order to achieve the ultimate goal of improving the individual and population health status and quality of life.

For more information on NCATS Participant day and video recording, click on links below.

picture-2.jpg



Event Information

https://ncats.nih.gov/ncats-day

Event Video

https://videocast.nih.gov/summary.asp?Live=28358&bhcp=1