Resources for Inclusive Community Involvement

Featured on this page are a list of resources covering various aspects of community engagement in clinical research.

Bill of Rights and Responsibilities for HIV Research

The cross-network Bill of Rights and Responsibilities for HIV Research document provides a short list of the rights and responsibilities for participants in a clinical trial. The purpose of this document is to help research participants act on their own behalf and in partnership with study staff. Rights and responsibilities listed in the document are in no particular rank order. This document was developed by the Community Partners Bill of Rights and Responsibilities Working Group for use by sites, at their discretion, along with informed consent forms. Feel free to share this resource with collaborators both within and outside the HIV/AIDS Clinical Trials Networks.

Bill of Rights and Responsibilities for HIV Research

Community Engagement Resource Highlights

Community Partners developed a Community Engagement Resources document highlighting some of the resources available to support community engagement in HIV research.

Community Engagement Resources Flyer

H=H, the H is for Human Podcast 

H=H, the podcast that centers on the Human in HIV. This podcast is sponsored by the HANC Legacy Project and presents content on the human side of research, featuring scientists and community members, and affirming communities disproportionately affected by HIV. 

Episode 13: Evidence2Practice
Episode 12: Margarita Breakfast Club. CROI 2023 HIV Prevention Highlights
Episode 11: The MOSAICO Study
Episode 10:
 World AIDS Day 2023
Episode 9: Hispanic Heritage Month | National Latinx HIV Awareness Day
Episode 8: The role of the community in the development of an HIV vaccine
Episode 7: Desire, Intimacy, Pleasure, and Sexual Health. An Interview with Jim Pickett 
Episode 6: Latinx & HIV: The National Latinx Conference on HIV/HCV/SUD
Episode 5: Transgender Women's Health Research
Episode 4: The Health of Transgender People
Episode 3: A Conversation with Carl Dieffenbach, Director of the Division of AIDS
Episode 2World AIDS Day
Episode 1: The H is for Human

HIV & AIDS Awareness Days

February 7: National Black HIV/AIDS Awareness Day
2020 statement from the Legacy Project and Women's HIV Research Collaborative

March 10: National Women & Girls HIV/AIDS Awareness Day
2023 infographic from the Women's HIV Research Collaborative
2022 infographic from the Women's HIV Research Collaborative
En español

March 20: National Native HIV/AIDS Awareness Day
2022 infographic

How to Critically (and Quickly) Read a Protocol

Understanding a protocol is important for community members interested in engaging in clinical research. One of the challenges for community and CAB members participating in protocol development is learning how to critically review a protocol from a community perspective. This document was designed and updated to help individuals understand the most important components of a protocol and how to critically (and quickly) read a protocol and provides suggestions to help focus on the most critical areas of the protocol to help save time.

How to Critically Read a Protocol - English
How to Critically Read a Protocol - Spanish
How to Critically Read a Protocol - Portuguese

How to Critically Read a Protocol - Cure Revision - English

NIAID HIV Language Guide

Language can empower, but it can also perpetuate stigma, and as studies continue to bear out, stigma exacerbates the HIV epidemic. While many factors that contribute to stigma are entrenched and systemic, NIAID officials have the immediate power and opportunity to improve language and lead by example. This guide includes language suggestions for communicating about HIV and related topics.

NIAID HIV Language Guide

Recommendations for Community Engagement

The world of clinical trials research is highly regulated, with an array of documents guiding the conduct of clinical trials research. Policy documents and procedural guidelines, such as Good Clinical Practice (GCP) and Good Clinical Laboratory Practice (GCLP), cover most aspects of clinical research but none of these documents discuss standards for engaging community in the research process.

Community representatives working with the National Institute of Allergy and Infectious Diseases (NIAID) at the NIH increasingly felt that this type of guidance was essential and in 2009 sought to develop recommendations as a way to address good community practice. These recommendations were updated in 2014, and again in 2020, to help research staff and community representatives expand and deepen existing partnerships, and forge new ones, with the ultimate goal of facilitating effective community engagement in all aspects of clinical trials research.

Recommendations for Community Engagement in HIV/AIDS Research Version 3.0
Recommendations for Community Engagement in HIV/AIDS Research Version 3.0 Portuguese Translation
Recommendations for Community Engagement in HIV/AIDS Research Version 3.0 Spanish Translation

Representative Studies Rubric (RSR)

The RSR is a tool to enhance the representation of study populations in clinical research. It consists of a twelve-item questionnaire that examines individual studies for their representation of study populations in terms of age, ethnicity, gender, injection drug use, pregnancy, race, and sex assigned at birth. The HANC Legacy Project recommends that research teams use the RSR proactively in the development of each study protocol.

The Representative Studies Rubric (RSR)

Tuberculosis Resources for Communities

As part of the mandate from DAIDS to work with other disease groups, Community Partners (CP) and the TB Community Research Advisors Group (CRAG) are collaborating and working together on a joint TB/HIV project. The Community Research Advisors Group is an international, community-driven advisory body that works to ensure the meaningful representation and engagement of affected communities in research conducted by the U.S. Centers for Disease Control and Prevention's Tuberculosis Trials Consortium. This group of research-literate activists supports a robust, comprehensive and innovative TBTC research agenda that is responsive to community needs as well as scientific priorities. 

One goal of the CP/CRAG partnership is to help educate TB community members and researchers about HIV and to help educate HIV community members and researchers about TB and how the two diseases are connected.

Transgender Resources

See the resources below for conducting gender-inclusive HIV research.

This document was developed in August 2023 by the NIAID Division of AIDS Cross-Network Transgender and Gender-Diverse Working Group. It outlines best practices for data collection.

Data Collection Recommendations

This guidance document highlights a number of different practices that can facilitate gender-inclusiveness in study protocol design, data collection, and data reporting across the networks, and it provides needed context and direction to support these efforts.

Guidance for Gender-Inclusive HIV Research Practices

This brief correspondence, authored by transgender scholars and published in The Lancet, outlines fundamental principles for conducting research with transgender and gender-diverse (TGD) participants. It offers six essential questions for researchers to consider when conducting research with TGD communities.

Research on Transgender People Must Benefit Transgender People

Transgender and gender-diverse (TGD) people are severely underrepresented in HIV research. To address this systemic issue, the HANC Legacy Project partnered with AVAC to devise this scorecard tool, which is intended for use by advocates and researchers alike when envisioning, designing, and/or grading clinical trials for meaningful TGD inclusivity. The Scorecard is based on a combination of AVAC's No Data No More: Manifesto to Align HIV Prevention Research with TGD Realities and the HANC Legacy Project's Representative Studies Rubric. Find the Scorecard and related resources below.

Scorecard Tool

Scorecard Slides presented at the 2023 Biomedical HIV Prevention Summit

Scorecard Poster presented at IAS 2023

The Transgender Training Curriculum for HIV Research was developed by the DAIDS Cross-Network Transgender and Gender-Diverse Working Group. It includes five training modules that are available as e-learning modules and in-person training tools. Access to the trainings requires a free DAIDS Learning Portal account, which can be created at the link below.

Transgender Training Curriculum for HIV Research