Engagement means active involvement of all stakeholders. Here you will find a collection of best and better practices, tools, and materials for engaging a variety of stakeholders throughout the research process.Explore
The innovative resources and tools found here can help you improve the quantity and quality of data used for your studies. PCORnet believes data networks should follow the principles of efficiency, interoperability, transparency, reproducibility, security, and inclusivity of stakeholders. Access pioneering data tools and models now!Explore
Find innovations that can be applied across the research life cycle - from generating research questions, identifying patients and capturing data, to disseminating results back to participants and the public. Explore these tools and move your research forward!Explore
Check out these resources to tap into the wealth of experience and expertise available through PCORnet – or share your own innovative research resources. Search and share now!
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The purpose of this Standard Operation Procedure (SOP) is to establish a uniform process for PCORnet studies to follow when developing manuscripts and defining and contracting participating authors.
PaTH: Retaining Local Perspectives in the Era of the Central IRB – The PaTH Network Protocol Review Committee Poster
As currently implemented, the single IRB process means valuable input from both institutional as well as patient and community resources of ceding sites is lost. The PaTH Network aims to develop and implement a process to ensure local patient input in research protocols reviewed under the single, or central, IRB model.
PaTH: A Multi-Site Review Process that Retains Local Patient Involvement in the Era of the Central IRB Abstract
The PaTH CDRN has developed a pre-IRB review process that incorporates input from all involved sites and their patient partners, enabling all stakeholders to help craft final research plans. Patient partners included in such a pre-IRB review often identify issues that are distinct from those raised by IRB members or by patients who work with specific research teams.
PORTAL and OneFlorida: ‘Safety of Direct Acting Antivirals for Patients with Hepatitis C Virus’ Research Request Form
The ‘Safety of Direct Acting Antivirals (DAA) for Patients with Hepatitis C Virus (HCV)’ project examined whether patients with HCV who are prescribed newer DAA medications experienced higher rates of adverse events than patients with HCV who are untreated.
PORTAL and OneFlorida: ‘Safety of Direct Acting Antivirals for Patients with Hepatitis C Virus’ Adverse Events Definitions
The ‘Safety of Direct Acting Antivirals (DAA) for Patients with Hepatitis C Virus (HCV)’ project examined whether patients with HCV who are prescribed newer DAA medications experienced higher rates of adverse events than patients with HCV who are untreated. The project team is sharing the list of the adverse events and definitions (e.g., ICD-9 and ICD-10 codes) used in this study of the safety of a specific medication. It can be used by others who are studying these types of adverse events.
This toolkit was created by members of the Patient Advisory Council (PAC) of ImproveCareNow. The purpose of this toolkit is to share personal stories about traveling with Crohn’s disease and ulcerative colitis, answer questions, and identify tips and techniques that can make travel easier, safer and more comfortable. Use this to inform the creation of a people-centered, condition-specific tools for improving quality of life.
The table below contains an evolving compilation of study management resources and tools from across PCORnet. Checklists, Policies, and Other Guidance SCILHS: Publications and Presentations Policy and Procedures ADVANCE: Research Glossary GRIPP2 Reporting Checklists: Tools to Improve Reporting of Patient and Public Involvement in Research REACHnet: An overview and implications for clinical research Rare Diseases Task Force Guidance Document PEDSnet: Research Resources PARTNERS: Research Collaboration Expectations PEDSnet: IRB/Regulatory Resources SMART IRB: Toolkit 1.0 Mid-South CDRN: Trial Accrual Tool and Instructions CENA: Organization Research Inventory Survey Consent Process, Diversity, and Inclusion NephCure Kidney Network: Patient Registry Informed Consent AR-PoWER: May 2015...
The table below contains an evolving compilation of governance resources and tools from across PCORnet. Charters and By-laws IBD Partners: 2016 Patient Governance Council By-laws PRIDEnet: Participant Advisory Committee Bylaws PRIDEnet: The PRIDE Study Participant Advisory Committee PAC By-laws COPD PPRN: Governing Board Charter Template MS-PPRN: iConquerMS Engagement Committee Charter Approved Signed MS-PPRN: iConquerMS Governing Board Charter MS-PPRN: iConquerMS Research Committee Charter MS-PPRN: iConquerMS Research Committee Charter Approved and Signed NephCure Kidney Network: Steering Committee Charter PMS-DN: Parent Action Committee Charter IAN: Community Advisory Council Charter Codes of Conduct, Group Norms, and Standard Operating Procedures Greater Plains Collaborative: Engagement Meeting...
This report supports understanding of the current landscape of engagement in PCORnet, identifies emerging promising practices, and provides a framework and baseline for future work aimed at assessing network engagement. Published: September 2018