Stakeholder engagement infrastructure to support multicenter research networks: Advances from the clinical research networks participating in PCORnet

• DOI: 10.1002/lrh2.10313
• Publication Date: 2022-05-13T05:59:14Z
• Authors: Elizabeth L. Cope; Kathleen M. McTigue; Christopher B. Fo...; Thomas W. Carton; Alecia M. Fair; Crispin Goytia; Joseph M. Harrington; Susan Lowe; J. Greg Merritt; Elizabeth A. Shen...; William J. Stephens; Anna Templeton; Neely A. Williams; Nadine Zemon; Sarah Millender; Rebekah S. M. Angove
• Keywords: Stakeholder Engagement; Leverage (statistics); Community Engagement

Abstract Background The evidence based on the inclusion of patients and other stakeholders as partners in clinical research process has grown substantially. However, little been reported how are engaged governance large‐scale networks infrastructure used by to support engagement network‐affiliated activities. Objectives objective was document activities practices emerging from Clinical Research Networks (CRNs) participating PCORnet, National Patient‐Centered Network, specifically regarding infrastructure. Methods We conducted an environmental scan PCORnet CRN structures, assets, services, focusing network oversight structures for policy development strategic decision‐making. included assets services supporting patient/stakeholder engagement. Data were collected searching web‐based literature tool repositories, review Engagement Plans, analysis previously key informant interviews, CRN‐based iterative structured worksheets. Results identified 87 discrete across nine CRNs. All CRNs engage patients/stakeholders their governance, maintain workgroups and/or staff dedicated overseeing strategies, offer one or more non‐CRN researchers enhance conducting research. Conclusions This work provides important resource community explore peers, reflect progress, consider opportunities leverage existing infrastructure, identify new collaborators. It also serves highlight a seeking efficiently conduct venue advancing science