This agenda template was developed by the Research Action for Health Network (REACHnet). It was created with patient stakeholders’ input for use during study meetings that include stakeholders, such as patients, clinicians, and/or payers, to overcome some common challenges stakeholders face during study-related meetings. This resource can be utilized during all phases of the research process.

This survey was developed by the study team to better understand stakeholder partners' experiences as advisors. It could be used as a template or an example for other teams interested in obtaining feedback from study partners on their engagement experience.

This short, graphically pleasing summary of the impact that engagement had on study design and conduct was presented to study stakeholders so they could understand how important their input was to this study. This format could be used by other study teams as a model to close the feedback loop with stakeholder partners.

This lay language training deck, along with its second part, clearly lays out the data analysis process. Part One focuses on observational study limitations and benefits, identifying variables of interest and managing common data issues.

This lay language training deck, along with its first part, clearly lays out the data analysis process. Part Two focuses on statistical testing to explain study data, understanding statstical jargon, and then focuses in on outcomes from the specific study at hand.

This two-pager on electronic health data utilizes the metaphor of making chocolate to clearly lay out how electronic health records can be used to anonymize data. It is a useful tool for clearly explaining EHRs and the privacy inherent in building a research network. It pairs with a video on YouTube that focuses on the same topic.

This video on electronic health data utilizes the metaphor of making chocolate to clearly lay out how electronic health records can be used to anonymize data. It is a useful tool for clearly explaining EHRs and the privacy inherent in building a research network. It pairs with a two-pager that focuses on the same topic.

This board charter template can be used to help study teams clearly lay out the roles of their advisory boards, bodies or committees. Using the format and content provided in this document as a jumping off point, study teams can work in collaboration with their partners to define the scope and responsibilities that will be expected of stakeholders involved with the study.

This communication tool clearly represents the positive impacts that partners have on studies. It guides users to lay out the topic, input and impact of engagement with stakeholders. This resource will help plan meetings, manage discussions, and share results with partners.

This meeting agenda example provides both a template and suggested topics for a Patient and Family Advisory Committee meeting. It can be viewed to develop communication strategies and planning discussions.

This communication tool tracks touches with stakeholder partners. It will allow your research team to build strong relationships with partners by ensuring timely and clear communication. It lays out both the input received and the ways that it was utilized to improve the project. It can be used internally by the study team or as a shared tool with partners.

This communication tool guides conversations between local sites and their partners while also creating a short report that can be shared with the governance team. This resource will help plan meetings, manage discussions, and share feedback between sites.

This toolkit was specifically designed to improve stakeholder recruitment, selection and engagement. This comprehensive document includes an overview of the SEED Method, instructions, example documents – including timelines, meeting agendas, and powerpoint slides – and customizable templates – including organizational documents, facilitation guides, and training materials. An optional evaluation module is also included as part of the toolkit for users who would like to assess SEED Method processes or outcomes.

This communication tool ensures that recommendations made at local sites are registered and acted upon by both the local study team and the study's steering committee. This tool walks each issue from the question posed by study staff through to the impact of feedback on the study itself. It is a useful tool both to track internal communications and to share with partners.

This meeting agenda example provides both a template and suggested topics for a Stakeholder Advisory Committee meeting. It can be viewed to develop communication strategies and planning discussions.

This newsletter by the PaTH study team includes research updates, spotlights on partners and team members, advertisements for study participants and more. It can be viewed by other research teams as an example of a co-produced communication tool.

The CISTO study team developed this newsletter to highlight the milestones of the first year of the study and preview what is upcoming in the following year. It includes an overview of recruitment, site launch information, study resources available, stakeholder successes and other updates. This newsletter can be viewed as an example for other teams.

In 2018, the Genetic Alliance Coordinating Center set out to capture and describe the engagement practices and lessons learned across PCORnet®. This presentation may be useful to stakeholders who want to assess and evaluate engagement activities within their organization. 

View the original report: Engagement Assessment Project: Findings and Recommendations

Genetic Alliance was formerly the Coordinating Center of PCORnet^®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

This report, developed by the PCORnet^® Engagement Committee, 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. This could be used by stakeholder groups to explore and assess the impact of network activities in engagement.

View the PowerPoint presentation of the report: Engagement Assessment Project: Results of the Engagement Assessment Project

The Engagement Committee was formerly a governance committee of PCORnet^®, the National Patient-Centered Clinical Research Network, from 2016 to 2018. PCORnet has been developed with funding from PCORI.

This engagement assessment tool developed by the PCORNet^® Engagement Committee describes principles to consider throughout your shared research process. Organizations can use these principles to help nurture essential partnerships, shape project values, and drive research progress. This assessment was adapted from a tool provided by the University of Kansas Medical Center for Frontiers: The Heartland Institute for Clinical and Translational Research # UL1TR000001 (formerly #UL1RR033179).

The Engagement Committee was formerly a governance committee of PCORnet^®, the National Patient-Centered Clinical Research Network, from 2016 to 2018. PCORnet has been developed with funding from PCORI.