Antecedentes del proyecto
Project Summary
Goal
Need for Engagement
The Foundation to Advance Vascular Cures is working with Chinese-speaking patients & caregivers living with vascular disease to build capacity to engage in research.
Identify and address barriers to research engagement among Chinese speaking patients with vascular disease in California.
Vascular disorders are understudied; Chinese-speaking patients are underrepresented. Enhancing patient involvement can improve research relevance and outcomes.
Partnership Approach
Collaborating with California organizations to support education and engagement. Focused on flexible, authentic partnerships to meet community needs.
Antecedentes del proyecto
Needs
Assessment
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Literature review to understand what has been done and conduct a gap analysis
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Interviews with key stakeholders to assess needs and preferences
Engage patients and stakeholders
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Focus groups with participants from educational sessions
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Steering committee made up of clinicians, researchers, patients, and patient advocates
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Consultation with community organizations
Community Consultation Outreach
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Partner with organizations to gain community trust and cultural insight
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Integrate perspectives of community organizations at all stages of activity
Videos of patients, clinicians, and researchers
Hear from patient advocates and lead researchers to learn how Chinese-speaking patients' voices and experiences are shaping research priorities, improving accessibility, and driving more inclusive, patient-centered approaches to care for underserved populations.
Education for patients, caregivers, and people at risk
To help Chinese-speaking communities learn about and participate in comparative effectiveness research (CER), we created easy-to-understand one-page handouts on research, CER, and PAD for use at community events.
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Additionally, we also offer an expansive collection of flyers and interactive modules on vascular conditions and health management.
Antecedentes del proyecto
A central lesson from this project is that engagement with Chinese-speaking populations is most effective when conducted through trusted community-based organizations. These organizations maintain longstanding relationships within their communities and serve as culturally aligned, credible intermediaries. Their established trust networks reduce barriers to participation, increase openness to research engagement, and strengthen sustainability.
Rather than developing parallel outreach systems, we leverage existing community networks as primary pathways for sharing materials. Community partners provide not only access but also insight into linguistic preferences, cultural context, and effective communication strategies within their particular population groups. We have learned through meetings, conversations, and feedback discussions, that preferences vary in different areas, so reliance on the knowledge and trust base of local community partners is essential.
Gracias a nuestros
valiosos partidarios de la industria
Este proyecto está financiado por el Instituto de Investigación de Resultados Centrados en el Paciente (PCORI), a través del Premio Eugene Washington de Participación en PCORI (EACB-32761). Las opiniones expresadas en este proyecto son responsabilidad exclusiva de la Fundación para el Avance de las Curas Vasculares y no representan necesariamente las opiniones del Instituto de Investigación de Resultados Centrados en el Paciente (PCORI®), su Junta de Gobernadores ni su Comité de MetodologÃa.