The Lupus Initiative

This case study shows off our capabilities in Evaluation

No two populations or projects are the same. That means robust and culturally relevant evaluations must be designed to fit the task at hand. It also means these evaluations must be refined and expanded with collaborators, stakeholders, and most importantly the populations of interest.

These are golden rules at KDHRC, and they have guided our approach to research and evaluation services from the start—including seven years of lupus specific awareness-building, training, and evaluation projects.

Our Work

KDHRC has enjoyed a long-standing collaboration with the American College of Rheumatology (ACR). Since 2016, we have served as the evaluation partner for the ACR’s Lupus Initiative®, a multi-faceted education program funded by the Office of Minority Health (OMH) and designed to reduce disparities and improve outcomes among people with lupus. As part of this effort, we have managed expert review panels to finalize a lupus curriculum for medical schools, led outreach to medical schools to disseminate curricula, and conducted online evaluations of practitioner toolkits and trainings.

As part of our lupus awareness work, we also assist Lupus Therapeutics, an affiliate of the Lupus Research Alliance, with the evaluation of its Patient Advocates for Lupus Studies (PALS) program, which aims to improve participation in lupus clinical trials through increased peer-to-peer education and availability of clinical trial information.

Our numerous research and evaluation services related to lupus awareness include:

  • Participant recruitment and retention
  • Qualitative research, including one-on-one interviews and focus groups with representatives of the intended audience
  • Multi-project concurrent management
  • Data collection, tracking, and analysis
  • Development and implementation of research methodologies, including RCT
  • Quantitative research, including feasibility, process, and outcome evaluations
  • IRB and other clearances
  • Report and manuscript development

Findings

Below are several findings from ACR’s Lupus Initiative projects that have impacted more than 7,400 lupus patients and health care providers and for which KDHRC has been an evaluation partner.

  • More than 1,800 African American women and Latinas ages 18-25 attended education sessions and events as part of the Playbook Project, an initiative to increase awareness and knowledge of lupus signs and symptoms. Outcome evaluations showed increases in lupus knowledge as a perceived benefit of engagement and exposure to the Playbook.
  • More than 500 non-rheumatology providers attended rheumatologist-led education sessions as part of the Small Group Project, which aimed to build relationships among healthcare providers while raising awareness of lupus, specifically in areas where rheumatology care is limited or unavailable. Outcome evaluations showed a perceived increase in lupus awareness and knowledge.
  • 120 providers completed an evaluation of the Lupus Nephritis Self-Management Project (LNSM), which included digital resources for people living with lupus as well as rheumatology and nephrology providers who may be in need of additional information for patients. These evaluations showed that rheumatology and nephrology providers perceived the education materials to be useful, usable, and effective.

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