Democratizing Education for Sickle Cell Disease Gene Therapy: A Community-Based Model for Creating Patient Education...

Area of Science:

• Community Engagement
• Health Communication
• Gene Therapy Research

Background:

• Deliberative democracy fosters consensus through participative engagement.
• The project partnered diverse stakeholders to develop patient education materials (PEMs) for sickle cell disease (SCD) gene therapy.

Purpose of the Study:

• To develop accessible PEMs for SCD gene therapy.
• To study the process of deliberative community-engaged research in gene therapy.

Main Methods:

• A multi-disciplinary group (patients, advocates, researchers, industry, government) participated.
• Data collection included surveys, recordings of deliberations, and focus groups.
• Mixed-methods analysis evaluated the deliberative community engagement experience.

Main Results:

• Participant experiences revealed strengths and challenges of the deliberative model.
• Four key focus areas for PEMs were identified: therapy types, social context, medical impact, and clinical trial participation.
• Insights into engaging diverse participants for gene therapy education were gained.

Conclusions:

• The deliberative community engagement model has strengths and challenges for diverse stakeholder involvement.
• Findings offer insights relevant to the growing field of gene therapy.
• The project successfully developed accessible patient education materials for SCD gene therapy.