项目背景
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
Dr. Shih &
Dr. Rosario
Collaborating with California organizations to support education and engagement. Focused on flexible, authentic partnerships to meet community needs.
Dr. JD Shih and Dr. Emily Rosario discuss the PCORI CER project and available educational materials.
项目背景
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 patient-centered comparative clinical effectiveness research (patient-centered CER), we created easy-to-understand one-page handouts on research, CER, and PAD for use at community events.
Additionally, we also offer an expansive collection of flyers and interactive modules on vascular conditions and health management.
项目背景
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.
本项目由患者中心结果研究所 (PCORI) 尤金·华盛顿 PCORI 参与奖 (EACB-32761) 资助。本项目中表达的观点仅代表血管疾病治疗促进基金会的观点，并不一定代表患者中心结果研究所® (PCORI®)、其理事会或方法学委员会的观点。