Resources

This multipart project included a survey of women and healthcare providers regarding obstetrical, gynecological, and breast care for women with disabilities; a review and analysis of survey data by broadly…

This symposium served as a vehicle for clarifying and exploring conceptual and practical interconnections among the organization’s patient experience, patient engagement, and learning healthcare system initiatives. Project Lead: Daniel Davis…

This project adopted the CEERIAS in-person approach from the PCORI-funded CEERIAS study, to the COVID-19 environment using virtual platforms such as video, radio, social media, and texting for community and…

This national summit held in October 2017 in Boston, Massachusetts, convened patients who have experienced vision loss from age-related macular degeneration (AMD), AMD patient caregivers, vision advocacy leaders, vision researchers…

This conference was held in September 2016 in Philadelphia, Pennsylvania, bringing together a host of healthcare providers, clinical guideline developers, researchers, policy makers, insurers, patients/patient representatives, patient advocates, and other…

This community convening was intended to build and give voice to a new community of fully engaged stakeholders for the purpose of identifying, facilitating, and delivering desired outcomes to celiac…

This series of convenings brought together stakeholders engaged in suicide prevention to share evidence-based practices in reducing suicide incidence in western Colorado and develop a patient-centered outcomes research/comparative clinical effectiveness…

This project involved patients and stakeholders in collaborative production, initially as redesigners to adapt the existing engagement tool, Integrating Behavioral Health and Primary Care (IBH-PC), into the PCOR/CER Partnering Guide…

This convening was intended to advance the body of knowledge on missed and delayed diagnosis of heart disease in women and increase interest in comparative clinical effectiveness research and patient-centered…

This conference convened PCORI-funded research groups and multi-stakeholder groups to accelerate perinatal depression patient-centered outcomes research/comparative clinical effectiveness research in rural communities. Project Lead: Kelli Ryckman, PhD, MS Organization: University…

This summit was held in August 2016 in Arlington, Virginia, and convened physicians, patients, the cancer support community, and researchers in meaningful dialogue to better understand how skin cancer patients…

This project, in partnership with Smart from the Start, sought to learn directly from members of underserved communities about challenges created by COVID-19 that must be addressed to facilitate partnership…

Howard Brown Health, in partnership with Four Corners, convened transgender and nonbinary (TNB) community leaders, patients, clinicians and researchers at The Next STEP (Supporting TNB Engagement in PCOR) Convening to…

The project team and its multi-state Special Olympics partners hosted a Health Research Summit focused on research collaboration and building capacity related to health disparities, health promotion, and access to…

This project’s objectives focused on developing insights to inform emerging research needs as it relates to patients, future plans to expand Not One More Life (NOML) beyond asthma education to…

This project established a consortium where students, parents, educators, and community stakeholders were brought to the same table to identify the key concerns regarding Seattle Public Schools students’ social emotional…

This project established the Colorado Patient Partners in Research (CoPPiR) Network, an online community that connects patient advisors with research teams. Leading this effort was the CoPPiR council, a diverse…

This project aimed to facilitate future research by understanding the factors most relevant to the successful use of telediagnosis and the best mechanisms for preparing relevant stakeholders to participate in…

This convening series engaged Historically Black Colleges and Universities and partnered stakeholders in cardiovascular research, highlighting the intersection of COVID-19, mental health, and stakeholder engagement using patient-centered outcomes research principles…

This project included two educational forums on patient-centered outcomes research and comparative effectiveness research that featured speakers representing patient groups, the research community, the healthcare sector, and government. Project Lead…

This project developed a Peer Mentorship Program aimed at increasing patient engagement and improving chronic kidney disease (CKD) patients’ well-being by exposing them to proven coping strategies for living well…

This initiative aimed to improve the understanding of the value of integrating patient-centered outcomes research in the healthcare community from the patient, provider, and community perspectives. Project Lead: Sarah Woolsey…

This project aimed to develop a network to connect parents of children with medical complexity (CMC) to each other and their key healthcare providers to identify the most common challenges…

This project built the Stakeholder Alliance for Children with Robin Sequence (RS) (StARS) community composed of RS parents, health systems personnel, clinicians and researchers to increase participation in patient-centered outcomes…

This project included the adoption and adaptation of the PCORI-funded tool, Inspiring Change Manual, to train patient and community stakeholders in community-based participatory research (CBPR) methods and strengthening and expanding…