Resources

This initiative aimed to educate diverse seniors about clinical research and prepare them to engage in patient-centered outcomes research as educated research partners and research advisory board advocates across disciplines…

The long-term objective of the COVID-19 and Other Infectious Diseases Engagement Initiative (COIDEI) is to reduce health disparities related to COVID-19 and other infectious diseases (COID) Project Lead: Beverly Quintana…

This initiative engaged members of Utah patient and family advisory councils (PFACs) to adapt a successful workshop and guidebook for PFAC members, presenting opportunities to enhance the skill set for…

This project sought to increase the number of Adolescent & Young Adult Oncology Councils and expand the capacity for adolescents and young adult stakeholder engagement in patient-centered outcomes research and…

This project brought together LGBTQ+ stakeholders to create a learning community to identify patient needs regarding trauma-related problems and to share information regarding benefits and challenges in delivering and evaluating…

This project strived to bring the patient voice to the forefront, unearthing the issues most important to the arthritis community through a series of nationwide listening sessions. Project Lead: Suzanne…

This conference included a patient-centered outcomes research track supported by PCORI. The objective of this track was to promote effective strategies to implement, evaluate, and sustain innovations that improve patient…

This initiative developed the Patient Survey Network as well as a list of prioritized research questions considered to be meaningful by bladder cancer patients and their caregivers. Project Lead: Angela…

This project built community-engaged research partnerships to improve the health of the Springfield, Massachusetts, community through the development of a community-engaged research workshop series and other related activities with stakeholders…

Benefit-risk assessments of medical products are the foundation for making decisions about the product all through its life cycle. This conference aimed to provide baseline knowledge for targeted stakeholders (patients…

This project aimed to establish training, provide tools, and create a network to help researchers and patients better connect and collaborate in patient-centered outcomes research. Project Lead: Danielle Lavallee, PhD…

This project was focused on building capacity for and implementing a diabetes-focused VIrtual Patient engagement (VIP) Studio to facilitate engagement efforts along the continuum of diabetes comparative clinical effectiveness research…

This project sought to identify research questions, shaped by beliefs, values, and preferences, that address patient-centered outcomes that are most important to Black Americans. A network of community members and…

This multi-stakeholder convening produced an infrastructure for sustained patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) collaboration and dissemination, and an agenda for increased mental and behavioral health PCOR/CER. Project Lead…

This project established a network of patients and key stakeholders to collaborate on developing a research agenda and setting research priorities to address the racial/sex-specific cardiovascular disease (CVD) disparities observed…

This project sought to leverage the Maternal Mental Health Research Collaborative (MMHRC) of mothers with mental illness and substance use, providers, and researchers to build out the infrastructure and tools…

This project captured the emerging COVID-19 research needs as expressed by high-cost, high-needs patients facing COVID-19 and other key stakeholders to collaboratively develop a roadmap for future patient-centered outcomes research/comparative…

This project sought to engage patients and caregivers as partners in COVID-19 research through facilitating incorporation of their perspectives in COVID-19 research and enabling connections between them and other researchers…

This roundtable identified barriers and enablers to shared decision making (SDM) in behavioral health (BH). Recommendations were developed along with a webinar and other communication strategies to summarize and share…

This project aimed to increase understanding about how Black and Native American women with chronic conditions think about their reproductive health decision making and ways to optimize their health prior…

This project created a set of tools for teaching justice-involved young people, their families and detention center workers about patient-centered outcomes research (PCOR). The first resource is a toolkit to…

This project adapted and scaled up a COVID-19- Focused Virtual Patient Engagement Studio (CoVIP Studio) to allow investigators to reach and engage diverse nationwide stakeholders in COVID-focused patient-centered CER, capitalizing…