–January 2019

KDHRC launches fourth year of support to ACR’s CDC co-op, kicks-off VERA.

KDHRC has been supporting and collaborating with the American College of Rheumatology (ACR) for more than seven years.  Since 2016, we’ve supported ACR’s work on a five-year co-operative agreement with the Centers for Disease and Control and Prevention (CDC) to ultimately improve health outcomes and time to diagnosis for individuals with lupus.  In year four of our work, we will support a variety of projects and tasks aimed to increase awareness of lupus, increase minority participation in lupus clinical trials, better understand the needs to self-manage lupus nephritis, and expand promotores de salud programs to Native American/ American Indian communities, among several other things.

More specifically, KDHRC will continue to support to The Playbook Project by expanding its reach and increasing rates of engagement.  KDHRC assisted in the development of the Playbook Project, an online guidebook of step-by-step plans, activities, and resources for use by organizations to execute lupus awareness events in their communities. The Playbook Project is designed for African-American women, ages 18-25 and in 2017-2018, was implemented with student organizations on college campuses.  In year four, we will expand the reach of the Playbook Project by implementing within faith-based organizations.  The Playbook will then be evaluated for it’s effectiveness.

In addition, KDHRC will help develop a community health representative (CHR) or community health worker (CHW) workgroup to provide input on the program development and implementation plans for a CHW project.  Ultimately the project is designed to assist health care providers correctly asses lupus signs and symptoms in groups at high risk for lupus, or what do if lupus is suspected. In addition to identifying CHR or CHW trainers within the Native American / American Indian communities, we will develop an evaluation plan, provide evaluation training, support trainers as they recruit CHRs/CHWs, and collect qualitative and quantitative data on pilot sessions.

As a compliment  to these projects, KDHRC recently started work on ACR’s VERA (Volunteers to Expand Rheumatology Access Project).  On this project, KDHRC will draft findings reports based on online member surveys and phone interviews, comparing segmented samples such as rural/non-rural, retired/early-mid-late in career/fellows, etc.  This project will be complete in March 2019.

For more information or to participate in these efforts, please contact Nicole Wanty (nwanty@kdhrc.com).