CASE STUDY

Co-Creating Empathic Solutions to a Wicked Design Problem

LIMIT JIA

The Recruitment and Retention Challenge

Recruitment has long been the Achilles heel of randomized, controlled, clinical trials. Oftentimes, clinical trials fail to deliver useable results due to failures in recruiting enough participants. The LimitJIA clinical trial faces an additional hurdle, as the clinical trial seeks to recruit participants within 6 months of diagnosis for an incurable chronic condition.

Strategic Foundation

  • Ethnography
  • Design Thinking
  • Quantitative and Qualitative Research

Deliverables & Tactics

  • Ethnographic Research Study
  • Custom Patient Engagement Protocols
  • Real World Qualitative Evidence
PROGRAM OVERVIEW

LIFT was hired by CARRA as part of a PCORI-funded effort to explore and prototype solutions for clinical trial recruitment challenges using ethnography, design thinking, and traditional qualitative and quantitative methods.

OBJECTIVE
  • To understand the parent’s reality upon diagnosis of a child with JIA at first joint.
  • To identify key factors related to clinical trial participation and retention.
  • To use an iterative design strategy to increase clinical trial participation and retention.
TARGETED AREAS OF FOCUS
  • Juvenile Idiopathic Arthritis
  • Clinical trial recruitment
  • Clinical trial retention
GOALS
  • Understand the emotional state and lived experience of parents and patients at the time of diagnosis

  • Assess the acceptability and effectiveness of clinical trial recruitment and retention materials

  • Iteratively design appropriate recruitment and retention materials over the course of the clinical trial

CHALLENGES
  • Navigating regulatory mandates on communication.

  • Identify key factors to recruitment for a population that may not be ready to participate in research.

METHOD
  • Co-design with diverse stakeholders
  • Ethnographic immersions supported by film documentation
  • Traditional methods including telephone interviews and electronic surveys
  • Thematic analysis of findings

Outcome

This study is ongoing. LIFT has completed a design thinking workshop and designed the initial tools for recruitment and evaluation. Protocol and IRB are finalized and this study will run through 2020.