A guide developed by the Parkinson’s Foundation to provide interested stakeholders with the tools, resources, templates and examples to run a Parkinson’s patient advisory board (ad board).

The purpose of this document is to provide tips that can help to optimize effective communication during virtual meetings for bilingual audiences who may also have hearing loss. Today's virtual world provides technological benefits that can ease communication and language access needs.

In this document, we share suggestions for meeting planning and implementation that will help to support participation of audience members who may have difficulty hearing or may not speak the language of the meeting facilitator or other attendees.

More on this resource

• Coalition Technology Tips for Bilingual Online Meetings (Grayscale)
• Coalition Technology Tips for Bilingual Online Meetings (Spanish)
• Coalition Technology Tips for Bilingual Online Meetings (Spanish, Grayscale)

The purpose of this training package is to give you tools and support to deliver the READI curriculum to your group. READI is designed as an introduction to health research for individuals with intellectual and developmental disabilities and their caregivers. In this booklet you will find everything you need to prepare and deliver the modules including ways to customize READI to best suit your group.

This toolkit was developed by Massachusetts General Hospital for community partners, researchers, clinicians, and other stakeholders who aim to understand and eliminate barriers to virtual engagement and access to mental health care for adults with serious mental illness. It includes findings, best practices, lessons learned, and strategies for engagement. It also includes sample documents and resources. It can apply to a broad spectrum of health equity initiatives. This toolkit is also available in Spanish. 

This document contains a description of peer priorities for mood disorders research compiled from (1) a review of survey data previously collected by DBSA and (2) a multi-stakeholder convening. The goal is for these priorities to inform conversations and collaborations between researchers, clinicians, peers, and mental health advocacy organizations as future mood disorders research is conceptualized and planned.

This document also informed the Recommendations for Creating and Sustaining Meaningful Partnerships Between Researchers and Peers during this project period.

This meeting summary, created by Cincinnati Children's Hospital Medical Center, provides an overview of the methods and results from their four All-In meetings. All stakeholders came together to develop a collective journey map, identify and prioritize patient-centered research questions, and create drafts of the Stakeholder Capacity Needs Report and Stakeholder Engagement Roadmap.

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 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 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 training deck lays out the multiple channels through which data can be disseminated once it has been collected and analyzed. This deck could help study teams explain the dissemination process as well as include stakeholders in selecting dissemination pathways and audiences.

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 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 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.

The Greater Plains Collaborative (GPC) Clinical Research Network (CRN) developed and used these engagement meeting norms as a way to orient and continually guide stakeholder interactions in their community. Use this document to guide the development of meeting norms for your own community.

GPC is a Network Partner in PCORnet^®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

This resource developed by the COPD Patient-Powered Research Network (PPRN) provides information about the COPD360social platform, the COPD Foundation online social platform for engagement throughout the research process. This platform serves as a vital tool for engaging stakeholders to support and participate in meaningful research, help generate ideas, and provide feedback. Organizations can use this resource to inform the design of their own social platforms to better engage their stakeholders throughout the entire research process.

COPD formerly was a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

This conference summary created by the UPMC Center for High-Value Health Care and the UPMC Wolf Center summarizes the activities from their one-day conference. The meeting aimed to create an opportunity for stakeholders to share ideas about when, where, and how PCOR/CER can be used to support transformation in a learning health system. It highlights presentations and discussions and outlines their next steps, including the creation of a strategic roadmap to guide stakeholder-driven PCOR/CER in health systems available here.

The University of Texas San Antonio held a symposium in collaboration with their annual geriatrics conference. Specific breakout sessions were designed for PCORI participants and facilitated by members of the Stakeholder Advisory Council. These breakout sessions focused on important areas for research related to prevention, diagnosis, and care as well as a toolkit for engaging people with dementia and their family caregivers as collaborators in dementia care research.

This 10-Step Guide to an All-In Meeting, was created by the NEC Society after their NEC Symposium. This framework walks through strategies for academic, scientific, and clinical faculty. Patients and families can authentically engage with each other during the planning and participation at a scientific meeting. It can be used by societies and rare disease groups to model the same approach to integrating patient-families and hosting an All-In Meeting.

Personalized Medicine Coalition convened patients, patient advocates, caregivers, healthcare professionals and academic researchers in a two-year project to develop a patient-centered research agenda identifying evidence gaps that must be filled to ensure personalized medicine treatment strategies better align with priority patient outcomes. In the first year of the project, PMC organized a series of four web forums to develop a set of patient-centered principles to inform a research agenda. The agenda was then used to inform a group of 45 patients, researchers, and healthcare providers at an in-person roundtable in Washington, D.C., at which participants translated the principles into research objectives. The complete research agenda will be published in the form of a white paper.

This is the meeting summary for Brain Recovery Project’s Functional Impacts of Large Pediatric Epilepsy Surgeries scientific stakeholder meeting and could be used as a model by teams to create interactive meeting summaries.

This is the program for ECRI Institute's 22nd Annual Conference on the Use of Evidence in Policy and Practice and could be used as a model by teams planning future multistakeholder conferences or meetings.

Presentation slides from the 2015 National Organization for Rare Disorders (NORD) Rare Disease and Orphan Products Breakthrough Summit provide information on the role patient groups can play in research. The slides share real-world examples of patient groups advocating for the inclusion of patient voices in patient-centered outcomes research. The presentation could be used by others to introduce patient advocacy in research, particularly in the field of rare diseases. View slides from the other sessions.