The AcademyHealth Annual Research Meeting (ARM) 2024 offered the opportunity to share some of the unique features of PCORnet®, with leaders highlighting how the multi-stakeholder ecosystem has enhanced researchers’ capacity to conduct national-scale comparative clinical effectiveness research (CER). The panel session, “Multi-Stakeholder Engagement and Collaboration: What We’ve Learned from Patient-Centered Research Using PCORnet,” brought panelists together to discuss how the PCORnet infrastructure works. It also shed light, through real-world examples, on some of the ways use of PCORnet is speeding patient-centered insights that improve clinical care.
Held at the Baltimore Convention Center on June 30, the session featured a panel of experts: Dr. Erin Holve, Chief of Research Infrastructure at the Patient-Centered Outcomes Research Institute; Al Richmond, executive director of Community-Campus Partnerships for Health; Dr. Kathleen McTigue, principal investigator for PaTH, a PCORnet® Clinical Research Network; and Dr. Tom Carton, chair of the PCORnet® Steering Committee.
Five Key Takeaways
- Visit the PCORnet® Front Door: PCORnet can support a range of study designs, including data-only projects, observational research, and clinical trials, and the panel emphasized that all collaboration with PCORnet resources starts at the PCORnet® Front Door.
- PCORnet resources can address significant research questions: PCORnet® Network Partners are primed and equipped to tackle the “big audacious questions” that often require incredible resources and infrastructure, such as comparing clinic-based and community-based peer support for individuals with intellectual and developmental disabilities (IDD) and evaluating melatonin versus behavioral therapy for sleep. This point is underscored by public query reports highlighting how PCORnet data resources could be used to support three priority research areas: IDD, telehealth, and maternal morbidity and mortality.
- Community organizations can benefit from PCORnet resources: Community organizations can leverage PCORnet to address their specific research needs. Notable examples given by the panel include collaborations with rare disease communities. Case studies explored by the panel highlight the practical ways in which investigators can connect with and leverage PCORnet resources to enhance their research efforts.
- The collaborative nature of the PCORnet infrastructure is a differentiator: The PCORnet governance structure is designed to facilitate extensive support through its resources. When utilizing PCORnet, researchers gain access to a wealth of expertise across various therapeutic areas. They also benefit from the insights provided by PCORnet® Network Partners, who possess in-depth knowledge of how their site’s data can best support research endeavors. Panelists emphasized the critical role of patient engagement in research powered by PCORnet®, using studies like the PCORnet® Bariatric Study and ACTIV-6 as examples.
- Real-world success stories continue to prove the value of PCORnet: The value of PCORnet continues to be demonstrated through a wide array of real-world success stories. PCORnet® Network Partners have effectively addressed a wide range of health services research and public health questions, showcasing versatility and impact. Projects like BP Control Lab, the U.S. Centers for Disease Control and Prevention (CDC) COVID-19 collaboration, the RECOVER initiative, and the CHI-RON project, highlight the capacity of PCORnet to support large-scale research on emerging and chronic health issues, as well as opportunities for rare disease research and engagement across all communities.
Overall, ARM 2024 was a success that demonstrated the potential of PCORnet to transform CER through robust stakeholder engagement and collaboration. By highlighting real-world examples and providing practical guidance, presenters empowered health services researchers to harness PCORnet resources for impactful patient-centered research. Would you like to engage PCORnet resources? Start by visiting the PCORnet® Front Door.