Month: June 2024

Community Convenings are in-person gatherings that bring together community members and researchers for facilitated discussions. These events are held at faith-based organizations or nearby community hubs. The conversations are guided by a community leader and representative from a faith-based organization, such as a pastor. Community members attending the convening learn about All of Us research from representatives of community organizations, All of Us Research Program participants, and researchers themselves.

Community members can also ask questions and talk about their thoughts and opinions. Researchers, community organization leaders, and All of Us research participants talk directly with community members and answer their questions.

Research teams that want to host their own Community Convenings should think about creating a planning team that includes community members, researchers, and participants from their study. They should consider several key factors, which include selecting a suitable venue, and deciding if the session will be filmed and posted online. Close collaboration with community organizations is crucial to navigate budgetary constraints and make informed decisions.  The advertising and other types of promotion of event to reach people to attend, such as on the radio, social media, or in newspapers.

Stage(s) of Research Process:

Planning for a Community Convening requires time and should start before the beginning of a research study.

• Study Planning: Researchers should build relationships with community organizations, including religious organizations, and work with these groups to choose the best way to host a Community Convening. The research team and their community partners can begin to select a place to hold the event and determine the costs.
• Study Conduct: During the research study, the researchers can work with their community partners and study participants to tell them how the study is going and let them know about any problems they are facing. This shows respect and trust between research teams, community partners and research participants. This trust and respect will increase the success of the Community Convening when the study is finished.
• Post-Study: The final planning for the Community Convenings occurs after the study is over. The planning should still include community organizations and religious organizations. The people planning the Community Convening should make sure that the way they give the study’s results to the community is helpful and easy to understand.

Who Might Benefit:

• Researchers
  • Can use the Community Convenings as one way to discuss research findings with community members.
  • Should think about who the right community or religious organization is to work with and build a trusting partnership early in the study planning process.
• Communities can watch previous Community Convenings to learn about All of Us research. If community members are asked to participate in a research study, they could think about telling researchers that they would like to have a Community Convening at the end of the study.

Key Takeaways and Examples in Practice:

• Working with people the community trusts is important when deciding how to return research results to community members.
• By working with community organizations and community leaders, research teams can make better choices on when to hold the event, where to hold it, and how to make sure it is a helpful experience for people that attend.
• The research results should be presented by community leaders, research participants, and researchers. They should use words and examples that are meaningful to the people who attend the Community Convening.
• The people chosen to present during the Community Convening should represent diverse perspectives and include community leaders and research participants.
• Researchers should think about talking with community members before they start their research study. This can help them identify the best way to return the research results in a helpful way.

This work was done with the direct support by each of the following partners who advance this work:

• NIH All of Us Division of Engagement and Outreach (DEO)
• Pyxis Partners
• Baylor College of Medicine, Department of Molecular and Human Genetics
• Tuskegee University
• Faith-based Genomic Research Institute
• And special thanks to representatives, panelists, support, and collaboration from the following partners
  • Delta Research and Educational Foundation
  • InGENEuity, LLC
  • Jain Society of Metropolitan Washington
  • John Hopkins School of Medicine
  • Mt. Lebanon Baptist Church, Baltimore, MD
  • National Medical Association/Cobb Institute
  • Real Chemistry
  • St. John Baptist Church, Columbia MD
  • The Henrietta Lacks Initiative
  • The Wilde Lake Interfaith Center, Columbia, MD

Keywords: Return on Research Value, Methods of Engagement, Equitable Engagement, Collaborative Decision-Making; Researchers; Communities

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Links to Relevant Resources:

• Example of a Flyer Advertising a Faith-Based Community Convening
• Example of a Flyer Advertising a Faith-Based Community Convening (II)
• Example of an Event Page for a Faith-Based Community Convening
• Video of Session 1 of Macon County Community Convening: Moving Us Forward!
• Video of Session 2 of Macon County Community Convening: Lessons Learned from the Past
• Video of Session 3 of Macon County Community Convening: Opportunities to Collaborate
• Publication Describing How All of Us Participants Define Return of Value in Research
• News Article Describing Macon County Community Convening: Discussing Medical Wrongs
• News Video Describing Macon County Community Convening: Medical Research Transparency
• 2022 All of Us Engagement and Outreach Annual Report
• 2023 All of Us Engagement and Outreach Annual Report
• Contact the NIH All of Us Research Program
• Contact the NIH All of Us Research Program Division of Engagement and Outreach at [email protected]

Definitions for each engagement objective can be found in the glossary.

The Coalition of Patient Advocacy Groups seeks to amplify the voices of patient advocates in all activities of the Rare Diseases Clinical Research Network. The Coalition works together to find the causes of all rare diseases studied in the Network. The Coalition has representatives on the Network’s Joint Leadership and Steering Committees. This gives the Coalition a defined role within the Network structure.

The Coalition also creates resources for patients and patient advocacy groups. Their first webinar series, available for free online, describes how patient advocacy groups can work with industry representatives and regulators to improve the patient experience in future rare disease clinical trials. The second webinar series, also available for free online, spotlights resources available for patient advocacy groups to accomplish their work.

Stage(s) of Research Process:

• Study Planning: The Coalition works directly with Network research groups to design studies, improve data collection, and develop recruitment materials.
• Study Conduct: The Coalition helps Network research groups and clinical sites by connecting patients and families to potential studies. They also educate healthcare providers so that they can refer patients to potential studies.
• Post-Study: The Coalition helps Network research groups share research findings to patients and caregivers through webinars, social media posts and videos, and personal appearances. The Coalition also helps share results with regulators, policy makers, industry representatives, and committees that write clinical practice guidelines.

Who Might Benefit:

• Patients, Caregivers, and Patient Advocacy Groups
  • Can use the information found in the Coalition’s webinar series, including a detailed description of the patient’s experience in rare disease clinical trials and resources available to patient advocacy groups.
  • Can use tools and information on the Resources for Patients and Families section of the Rare Diseases Clinical Research Network. The Coalition has direct input on these materials. The information covers topics such as finding financial aid, how to communicate with healthcare providers, and how to join or make a patient registry for rare disease.
  • Will also benefit from the progress towards new treatments and cures for rare diseases that result from their contributions in Network decision-making.
• Researchers can use the structure of the Coalition as an example for including the voices and perspectives of patients and patient advocacy groups in decision-making for research efforts.

Key Takeaways and Examples in Practice:

• The Coalition provides researchers with study design tools to increase the chance of study success, provides information about the research network to their patient communities, and assists with patient recruitment.
• Shared leadership of a research network accelerates progress towards the testing of new treatments in clinical trials and turning research findings into treatments.
• Patient advocates provide meaningful information to researchers to help decide research priorities and agendas.
• Researchers are inspired by patient advocates and appreciate their contributions to study design, recruitment, and sharing of results.
• It takes time to build the understanding, trust and flexible governance that are needed for these new models of shared leadership between patient advocates and researchers.

This work was done with the direct support by each of the following partners who advance this work:

• Rare Disease Clinical Research Network Consortia
• National Institute of Health Partners and Key Personnel
• Rare Disease Clinical Research Network Committees

Keywords: Collaborative Decision-Making; Methods of Engagement; Sustainable Engagement & Capacity Building; Return of Research Value; Patients, Caregivers, and Patient Advocacy Groups; Researchers

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Links to Relevant Resources:

• About the Coalition of Patient Advocacy Groups
• Coalition of Patient Advocacy Groups Steering Committee
• Coalition of Patient Advocacy Groups Webinar Series
• Scientific Publication Describing the Partnership Between Patient Advocacy Groups and Research Teams in the Rare Diseases Clinical Research Network
• Resources for Patients and Families
• Rare Disease Research Network Research Teams
• NIH Partners and Staff for the Rare Disease Research Network
• Contact the Rare Disease Research Network

Definitions for each engagement objective can be found in the glossary.

The Nonprofit Forum happens once a year and brings together diverse voices in the neurological disorder community. The Nonprofit Forum is attended by people with lived experience of neurological disorders, leaders of patient advocacy organizations, and staff at the National Institute of Neurological Disorders and Stroke (NINDS).

People who attend the Forum talk about research priorities for neurological disorders, learn more about the research already happening at NINDS, and build relationships with each other. The Nonprofit Forum is free to attend, and participants can attend in-person at the National Institutes of Health (NIH) or virtually. For people who miss the meeting, a video of the meeting is available on the Nonprofit Forum’s website.

Stage(s) of Research Process: 

• Study Planning: When people attend the Nonprofit Forum, they get to make sure NIH and researchers understand what topics they think are most important. People who attend can also learn how to meet with researchers and start building better relationships with them. These relationships can lead to active partnerships where people work with researchers to design studies that ask the most important questions.

Who Might Benefit:

• Patients, Caregivers, and Patient Advocacy Organizations
  • Can attend or participate in the Forum to tell the NIH what they think are the most important research questions about neurological disorders.
  • Can watch videos of previous Nonprofit Forums online. The videos talk about research, research questions important for neurological disorders, and about how the NIH works.
  • Can attend the Forum to talk with other patient advocacy organizations and learn good ways for achieving their goals. They can also learn these successful ways by watching the videos on the Nonprofit Forum website.
• Researchers and Research Administrative Leaders
  • Can participate in the Forum to understand more about neurological disorders from people whose lives are affected by neurological disorders.
  • Can use the Nonprofit Form as an example for how to create a space for researchers, patients, and patient advocates to work together.

Key Takeaways and Examples in Practice:

• The topics included in the Nonprofit Forum should be chosen by a group of people that include nonprofit organization staff, researchers, and people with lived experience. This makes sure that the information is relevant to everyone who attends the Forum.
• Use feedback from participants to inform program content in future years.
• It is important that meetings like this have an option for people to attend online. This makes it easier for people who cannot travel to learn and participate.
• The videos available online are useful to people who work at patient advocacy organizations, and they share them with others.

This work was done with the direct support by each of the following partners who advance this work:

• The Nonprofit Forum planning committee of patient advocacy organizations and NINDS staff (the planning committee members change every year to make sure there is equal opportunity for participation across different patient advocacy organizations)
• NINDS’s partnership with the patient advocacy community

Keywords: Sustainable Engagement & Capacity Building; Patients, Caregivers, and Patient Advocacy Groups

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Links to Relevant Resources:

• The Nonprofit Forum Website
• 2024 Nonprofit Forum Agenda and Program Content
• Recording of the 2023 Nonprofit Forum
• Recording of the 2022 Nonprofit Forum
• Recording of the 2021 Nonprofit Forum
• Contact NINDS Nonprofit Forum

Definitions for each engagement objective can be found in the glossary.

The ComPASS program aims to empower community organizations to take ownership of their own health challenges and solutions. ComPASS is an NIH program that directly funds community organizations to create and test interventions. The goal of the interventions is to address health disparities and advance health equity among the populations served by the community organizations.

Academic researchers work together with community organizations to support their research goals and co-design community-led interventions to address social determinants of health that have an adverse impact on people’s health, well-being, and quality of life. ComPASS also aims to provide resources for community organizations and relevant partners to enhance their ability to sustain their intervention over time and compete for future research funding.  

Stage(s) of Research Process

• Study Planning: Community organizations lead efforts to identify and design interventions, and work together with researchers to create and test their intervention.
• Study Conduct: Community organizations lead study recruitment, deliver the intervention, and check to see if the intervention successfully reduced health disparities.
• Post-Study: Results from the research studies must be discussed in both academic and community settings. Community organizations are responsible for identifying new and interesting ways to share intervention results with their communities.

Who Might Benefit

• Community Organizations
  • Will benefitfrom theresources available on the ComPASS website. These resources include guidance documents, trainings, webinars, workshops, consultative services, and publications. This information will be valuable in helping community organizations understand how research works and provide strategies for working together with academic researchers and other community partners.
  • Will benefit from the results of the 25 community organizations who received money from the ComPASS program. These 25 organizations will be able to share their experience to empower other communities and organizations to take leadership over addressing and improving health among the populations that they serve.
• Researchers may find the ComPASS community listening sessions (held prior to program launch) useful for understanding community needs and ways to improve the perception of research and researchers. This may lead to additional focus on research co-design moving forward.

Key Takeaways and Examples in Practice:

• Health interventions do not work for long if they do not include resources for the community to continue using the intervention in the future.
• The current status quo values the voice of the researcher more than community voices, and ComPASS was designed to change that.
• NIH used community members’ opinions and ideas when designing the ComPASS program.
• Community organizations can find it difficult to apply for NIH funding. ComPASS provides resources for community organizations to be more prepared to apply for and receive NIH funding.
• ComPASS stimulated community-led research at NIH, transforming health equity research and advancing health for all. 

This work was done with the direct support by each of the following partners who advance this work:

• ComPASS NIH Working Group
• ComPASS Awardees and Their Research and Community Partners

Keywords: Methods of Engagement; Collaborative Decision-Making; Equitable Engagement; Sustainable Engagement & Capacity Building; Return of Research Value; Communities; Researchers

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Links to Relevant Resources:

• NIH ComPASS Program
• ComPASS Coordination Center
• Introduction to ComPASS – YouTube Video
• ComPASS Funded Research
• ComPASS Consultive Resource Through the Community Engagement Alliance
• Listening Sessions to Shape the Innovative NIH ComPASS Common Fund Program to Advance Health Equity
• How to Write a Compelling Research Question and Build a Research Team – Webinar
• NIH ComPASS Working Group

Definitions for each engagement objective can be found in the glossary.

The Building Research for Academic and Community Equity (BRACE) Toolkit is a set of materials to help community organizations and researchers build equitable partnerships. The Toolkit provides information and templates for both community organizations and researchers to help them in working together during the research process.

The Toolkit also includes a form that both researchers and community organizations can complete to connect with an appropriate partner and start a collaboration.

Stage(s) of Research Process: 

• Study Planning: The Toolkit provides recommendations on how to create equitable relationships between community organizations and researchers. These relationships are critically important during the early stages of the research process and should be established at the start of a project.

Who Might Benefit:

• Community Organizations
  • May benefit from the Toolkit’s strategies for working with medical researchers and clinicians to serve on scientific or medical advisory boards.
  • Can use the Toolkit’s information on how to determine if a research proposal is a good fit for their organization, understand what a partnership with a research team would look like, the general timeline of research studies, and the role of Institutional Review Boards in research.
  • Can also use the Toolkit’s template for writing legal and contractual documents between their organization and the research team.
• Researchers
  • May benefit from the Toolkit’s information on beginning a partnership, ensuring equitable data collection, and sharing of results, and tips for writing competitive research proposals.
  • Can use the Toolkit’s templates for resumes/biosketches, plans for sharing results, inclusion enrollment reports, and data safety monitoring plans.
  • Can also use the Toolkit’s guidance on how to add community engagement efforts into their grant and budget proposals.

Key Takeaways and Examples in Practice:

• Creating equitable partnerships between community organizations and research teams can be enhanced by using dedicated materials that help community organizations understand the research process.
• The Toolkit creators are considering ways to monitor the Toolkit and its use in practice.
• The Toolkit creators are also thinking about future additions to the Toolkit, including strategies for handling conflict and concluding a partnership when it has achieved its goals.

This work was done with the direct support by each of the following partners who advance this work:

• Kimberly Kiley and FrontLine Service
• Julie Merker and Beech Brook
• Patricia Terstenyak and Susan G. Komen
• Carey Gibbons and The LGBT Community Center of Greater Cleveland
• Diane Mastnardo and the Massage Northern Ohio Practice Based Research Network
• Yvonne Oliver and Universal Healthcare Action Network Ohio
• Rachelle Milner and West Side Community House
• Cathy Vue and Asia Services in Action
• Mickey Weisen and United Way 2-1-1

Keywords: Equitable Engagement; Methods of Engagement; Communities; Researchers

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Links to Relevant Resources:

• Register for the BRACE Toolkit
• Strategies for identifying medical researchers and clinicians to serve on scientific or medical advisory boards
• Scientific Publication Describing BRACE Toolkit and Its Development
• Contact the BRACE Toolkit Team at the Center for Health Equity Engagement, Education, and Research

Definitions for each engagement objective can be found in the glossary.