Project Summary
PCORnet®, the National Patient-Centered Clinical Research Network projects place a major focus on engagement of stakeholders, including patients, families, community groups, clinicians, health systems, and payers. Stakeholders can point out research topics, study design, and how to conduct and review a study, along with sharing study activities. The overall conduct of PCORnet’s commitment to stakeholder engagement will greatly benefit from a strong engagement focus in the PCORnet Coordinating Center.
This Phase 3 Coordinating Center for PCORnet will serve as a PCORnet Engagement Coordinating Center (PECC) to oversee activities at the national level and to help run activities across PCORnet sites. It will aid in the development of strong policies for PCORnet that move the role of stakeholders forward in all PCORnet activities. The PECC will be led by and engage a diverse range of individuals that represent racial, ethnic, gender, geographic, and other forms of diversity and represents a dynamic group of stakeholders impacted by patient-centered research including families and patients, community groups, local and federal government agencies, clinicians, health systems, and payers.
The PECC team represents a unique group of leaders and stakeholders with decades of experience in engagement; community-based research; diversity, equity, and inclusion work; working with underserved populations; health communication; addressing social and behavior factors of health; real-world clinical trials; and research that identifies what clinical and public health interventions work best for improving health. It has significant experience in leading stakeholder engagement activities for various PCORnet national studies such as 1) a recent data-focused PCORnet study on the impact of different surgeries for weight loss, 2) a real-world clinical trial (ADAPTABLE) that evaluated the best dose of aspirin for patients with heart disease, and 3) current work on a trial (PREVENTABLE) testing the role of cholesterol-lowering drugs to prevent dementia.
The PECC will ensure that all PCORnet projects follow the PCORI Engagement Rubric (a PCORI guide for engagement practices), PCORnet core values, and the standards of the PCORnet Engagement Work Group. It will also directly partner with the PCORnet Engagement Work Group to oversee plans and approaches related to engagement.
The PECC’s goals are to create the structure to support true engagement of patients, families, clinicians, health systems, and other stakeholders in all parts of PCORnet research and to grow research that respects stakeholders’ views on the meaning and acceptability of research. This includes making sure that stakeholders are engaged in identifying research topics, have opportunities to lead and provide input to research projects, and are involved in the decision making on projects. The center’s approach is guided by a stakeholder engagement model that recognizes that stakeholders can provide varying levels of input to guide work and inform research projects. This includes:
- Having stakeholders involved in leadership and partnership roles on PCORnet decision-making bodies
- Development of PCORnet policies that support principals of engagement
- Having stakeholders participate as co-principal investigators or co-investigators on projects
- Having processes and support directly engaging stakeholders for input on PCORnet research projects
- Sharing best practices and trainings across PCORnet and with stakeholders to better the stakeholder engagement process
- Engaging patients, communities, health systems, and other stakeholders to support sharing of findings using scientific or plain language, depending on the audience
- Assessing the impact of stakeholder engagement