- The PCORI Strategic Plan
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- The PCORI Strategic Plan
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Past Opportunities to Provide Input
- Patient-Centered Economic Outcomes Landscape (2023-2024)
- Systematic Review of Audio Care for the Management of Mental Health and Chronic Conditions (2023) -- Draft Key Questions
- Proposed New Methodology Standards for Usual Care as a Comparator (2023)
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
- Past Opportunities to Provide Input
In response to the increasing crises of over 700 maternal deaths and nearly 73,000 reported cases of maternal morbidity occurring in the United States as recently as 2022, maternal morbidity and mortality is one of PCORI’s designated priority health topics. One of the largest contributors to these statistics is cardiovascular disease, which accounts for one in four reported maternal deaths.
Eugene Washington PCORI Engagement Award projects like those of Sharla Smith, Ph.D., MPH, from the University of Kansas Medical Center Research Institute, and Anitha John, M.D., Ph.D., a pediatric and adult congenital cardiologist from the Children’s Research Institute/Children's National Hospital, are facilitating projects to impact maternal health as it relates to cardiovascular disease.
Smith's and John's respective project teams have focused on engaging unique stakeholders to enhance understanding of the effects cardiovascular disease has on maternal populations through engagement tactics and listening to the first-hand experiences of patients. Both projects aimed to advance and discern priorities for future research.
As Smith reflects, "Our project is influencing patient-centered outcomes research and comparative clinical effectiveness research (PCOR/CER) to provide quality, culturally and linguistically compounded health care for birthing persons and families. Because we have a diverse group of stakeholders, it not only impacts the patients and the work that we do; it also influences the community members and health care providers that live within these systems."
Engaging patient and stakeholder voices before research is conducted is key, and the awardees saw increased engagement during this period with their stakeholders beyond what was anticipated, not only through patient and physician perspectives but also those of psychologists, nurses, caregivers and advanced practice providers. “One partner that was especially instrumental in providing patient engagement,” states John, “was the Adult Congenital Heart Association.”
A positive aspect of the shift to virtual engagement was that it instilled a mentality of 'leaving the door open to all voices.'Anitha John, M.D., Ph.D. Children’s Research Institute/Children’s National Hospital
Each project emphasized the importance of including as many perspectives as possible, demonstrating how much can be learned from each stakeholder participating in the process. Through this reciprocity, strategic road maps and research priorities were created during the project period to highlight short- and long-term PCOR/CER priorities. The research topics identified the disproportionate outcomes seen in maternal morbidity and mortality because of cardiovascular disease, while pinpointing topics that could be used to conduct future PCOR/CER.
Both awardees faced challenges in the process, as the need to accommodate the demands of stakeholder schedules pivoted the groups convenings and consortium to a virtual setting. Although there had been a great deal of interest, scheduling meetings with all stakeholders proved to be particularly challenging. However, a positive aspect of the shift to virtual engagement, according to John, was that it instilled a mentality of “leaving the door open to all voices.” With nearly 1,000 respondents from across the country, this allowed space to determine priority topic areas from many individuals who otherwise might not have responded. Within Smith’s project, this came to fruition in the form of virtual interest meetings, as well as virtual participation in a collaborative network that created the visual roadmap. This furthered the motive to understand what the parties needed, maintain open lines of communication and provide ways to participate in creating the research priorities.
As the projects continue, the newly created road maps will be utilized to sustain high levels of engagement. This will be achieved in Smith’s project using marketing tools, such as refrigerator magnets, and dissemination on her organization's website. John plans to also engage and collaborate with representatives from professional organizations such as the American College of Obstetricians and Gynecologists, the Society of Maternal Fetal Medicine, the American College of Cardiology, and the American Heart Association, that are critical stakeholders in future partnerships with patients and other stakeholders. These and other future collaborative processes will be instrumental in helping to shift maternal health outcomes. As Smith states, "This is significant work, and these women deserve for us to make sure that there are PCOR/CER approaches in place.”