PaTH brings together researchers, clinicians, patients, and health system leaders from the Mid-Atlantic and Mid-West regions: the University of Pittsburgh/UPMC Health System; Geisinger Health; Johns Hopkins University/Johns Hopkins Health System, Penn State College of Medicine/Penn State Milton S. Hershey Medical Center; Temple Health System/Lewis Katz School of Medicine at Temple University; the Ohio State University/Ohio State University Wexner Medical Center; and the University of Michigan/Michigan Medicine. The team’s mission is to use patient-empowered research to address the questions and concerns that matter most to communities to make better health decisions.
Why is this project important to patients and caregivers? PaTH has worked to make it easier to do rapid, large-scale, patient-centered health research in its healthcare systems and communities. The team ensures that real-world data from partnering health systems (>14 million patients) is ready for analysis and can be accessed in an efficient way. The team has also emphasized the need to protect patients’ privacy. To optimize the ability to support studies, the team has linked health record data with other data such as health claims. The team’s sites can all use the PCORnet®-approved privacy-preserving approach for data linkage.
The team encourages researchers to develop study ideas that are patient-centered and easy for community members to participate in—and then supports those studies when they become realities. Research teams have engaged in 28 studies that examine patterns in real-world health data to understand how health/illness change over time, and the effects of different treatment options. The team has also led or participated in eight clinical trials.
Patients and other stakeholder partners will help to make the project successful. The PaTH Executive Committee’s two voting patient partners will help to steer network decisions. The team works with over 100 clinical champions within its healthcare systems. These healthcare providers make it easier for people who work in these health systems to get involved with research. A PaTH committee involves patient partners and ethics/regulatory experts to make sure that PaTH research is patient centered. The team will ask patient partners to give feedback on the topics of PCORnet data queries twice a year to make sure that it is addressing topics that matter. The team will ask patient partners who work with PaTH/PCORnet studies to share their thoughts about what is helpful and challenging about working in research and use that input to help research teams function effectively.
Patients, caregivers, clinicians, and research participants will be invited to share stories about health and health care in the team’s Story Booth project. The stories can help researchers understand patient perspectives and ask research questions that matter. Also, storytellers can be matched with researchers leading studies on the same topic to form research teams where patients help guide the research.
In PCORnet 3.0, patients, healthcare providers, and health system leaders across PaTH will be invited to virtual meetings to discuss findings from the studies the team worked on in the past year. By reflecting on what the team has learned, the researchers hope to identify ways in which health care can be improved.
MMM-IDD Capacity Building Project
This project received additional funding in 2022 to support infrastructure capacity building to facilitate patient-centered outcomes research aligned with two PCORI priority research areas: Maternal Morbidity and Mortality (MMM) and Intellectual and Developmental Disabilities (IDD).
PCORI funds patient-centered outcomes research (PCOR), a type of comparative clinical effectiveness research (CER) that focuses on outcomes that matter to patients, their caregivers, and their families. As part of PCORI’s reauthorization in December of 2019, Congress included two new research priority areas: maternal morbidity and mortality (MMM) and individuals with intellectual and developmental disabilities (IDD).
The goal of this project is to strengthen the capacity of PCORnet®, the National Patient-Centered Clinical Research Network’s infrastructure to facilitate PCOR focused on these two priority areas by:
- Developing MMM and IDD research agendas focused on CER questions which the PCORnet® infrastructure and resources are well- suited to address,
- Identifying national experts in IDD and MMM who are affiliated with PCORnet partner organizations to inform understanding of PCORnet strengths and potential limitations to address PCORI’s strategic priorities, and
- Identifying potential gaps in existing PCORnet capacity (e.g., data resources) needed to address high-priority IDD/MMM PCOR questions.
Enhancement Award Amount: $76,293
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.