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

Guidance for Gender-Inclusive HIV Research Practices

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 provides needed context and direction to support these efforts.

Guidance for Gender-Inclusive HIV Research Practices

H=H, the H is for Human Podcast 

H=H, the podcast that centers on the human in HIV, presents content on the human side of HIV research, education, affirming Black, Indigenous, and other People of Color (BIPOC), and sexual gender minority communities desproprotionally impacted by the HIV. 

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
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

Long-Acting Antiretroviral Injectables Info Sheet

The Legacy Project Working Group has produced an information sheet that includes the recent developments on Long-Acting Antiretroviral Injectables (LAIs) in different formats for use in social media outlets or to print.   

Long-Acting Antiretroviral Injectables Brochure (horizontal format)
Long-Acting Antiretroviral Injectables Brochure (vertical format)
Long-Acting Antiretroviral Injectables for Treatment (flyer)
Long-Acting Antiretroviral Injectables for Prevention (flyer)

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.