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Legacy 2018 Work Plan

The Legacy Project builds trust and collaboration between HIV research institutions and the communities most impacted by the US HIV epidemic.

The Legacy Project 2018 Work Plan is in line with the 2016 NIH HIV/AIDS Research Priorities and Guidelines for Determining AIDS Funding, cutting across areas of basic research, health disparities and training, including research to reduce health disparities in the incidence of new HIV infections, research in treatment outcomes for those living with HIV/AIDS, Research training of the workforce required to conduct high priority HIV/AIDS-related research, and addressing health and social issues that are linked with HIV (e.g. transmission/acquisition, pathogenesis, morbidity and mortality, stigma, racism, transgender antagonism, poverty, etc).  

Legacy Project Objectives:

  1. Build capacity among community members and researchers to address disparities that impact HIV acquisition and treatment outcomes by providing culturally appropriate guidance and leadership in development, implementation and dissemination of information about HIV research focused on and responsive to the needs of disparately impacted populations.
  2. Facilitate collaborative (community, site and network) involvement throughout the research process among the NIH HIV/AIDS clinical trials networks.
  3. Identify areas where there are gaps and/or opportunities for improvement in collaboration with network leadership and DAIDS to address those issues.
  4. Expand Legacy’s presence on social media platforms, developing and providing content to Legacy’s Facebook, Twitter, and Instagram accounts. Additionally, identify ways to enhance community engagement and provide access to Legacy resources through social media.


Legacy Project – Concentration Areas 2018


Section I - Cross-Sectional Initiatives 2018

This section highlights initiatives which address cross-sectional, multidisciplinary needs.

 

Governance & Membership

·         Develop guidelines/bylaws to communicate structure, relationships between Legacy, HANC, Networks,   NIAID and other stakeholders in line with the WHRC Guidelines.

·         Define role and expectations of Legacy Project staff.

·         Define role and expectations of working group members.

·         Define membership selection representation, responsibilities, and terms.

·         Define Legacy Project working group leadership duties and terms of leadership.

·         Define Legacy Project committee or working groups and relationship to Legacy Project.

 

Cross-Network Collaboration

Ongoing Engagement:

  • Consult/collaborate with populations at high risk for HIV acquisition and burden, as well as those underrepresented in HIV clinical research (Black and Latino MSM, women, transgender persons, house/ball communities, Black gay pride attendees, other events focused on Black MSM, HBCUs, TCUs, and Historically Serving Institutions, etc.), to identify community-level priorities and raise awareness of these priorities among all of the NIH HIV/AIDS clinical trials networks and sites.
  • Maintain relationships with network communications and community engagement staff in collaboration with Community Partners, the HPTN Black Caucus, and the HANC-facilitated Communications Working Group.
  • Formation of a Conference Engagement Working Group to plan for network and other national conferences and events.

Impact Activities:

  • Host community-focused webinars on HIV prevention, treatment and cure clinical research advances in collaboration with the NIH HIV/AIDS clinical trials networks.
  • Host or co-host community-focused workshops/presentations on ongoing network research including cure, PrEP, TasP, microbicides and vaccines at meetings/events.

 

Be The Generation

Ongoing Engagement:

  • Maintain collaborations/partnerships with former Be the Generation (BTG) partners and select CBOs and ASOs across the U.S.

Impact Activities:

  • Oversee publication of quarterly BTG e-newsletter in collaboration with the HPTN, HVTN and MTN.
  • Update and promote the BTG HIV Prevention Research and Basic Scientific Literacy Modules.
  • Promote the BTG website  

 

HIV Education, Research and Scientific Literacy Initiatives

Ongoing Engagement:

  • Develop strategies to provide information/messaging focused on HIV treatment.

Impact Activities:

  • Disseminate training materials designed to increase scientific literacy among historically underrepresented communities most impacted by the domestic HIV epidemic.
  • Conduct capacity building and HIV scientific literacy training with Legacy Project collaborators and populations underrepresented in HIV clinical research to increase awareness and knowledge of HIV clinical research and community readiness to engage in trial participation activities.
  • Invite Martin Delaney Collaboratory to Legacy call or webinar to present on HIV cure research.


Awareness Initiatives

Ongoing Engagement:

  • Develop strategies to establish and/or enhance linkages/partnerships with other Legacy stakeholders.

Impact Activities:

  • Submit abstracts to NAESM and other conferences that have a specific focus on key populations impacted by the Domestic HIV epidemic to identify HIV decriminalization as a priority
  • Utilize Community Partners to help promote the Legacy Project practices to address disparities, health and social issues in the context of HIV which can be applied in various populations and settings globally with high HIV prevalence or incidence.

__________________________________________________________________________

 

Section II – Engagement of Key Populations 2018

This section highlights initiatives specific to peoples disproportionately impacted by HIV.

 

Men Who Have Sex with Men

Ongoing Engagement:

  • Highlight HIV stigma as a mental health hazard for MSM.

Impact Activities:

  • Submit abstracts to NAESM and other conferences that have a specific focus on MSM populations disproportionately impacted by the Domestic HIV epidemic.
  • Host a collaborative webinar with the HPTN Black Caucus exploring the links between mental health, trauma, gender, and HIV acquisition.

 

Transgender People

Ongoing Engagement:

  • Promote and support the work of the DAIDS Cross-Network Transgender Working Group to identify and address challenges and issues that impact transgender inclusion in the NIH-funded HIV/AIDS network trials.

Impact Activities:

  • Collaborate with DAIDS, WHRC, Community Partners and the NIH HIV/AIDS clinical trials networks to address transgender cultural competency and inclusion in network protocols.

 

Women’s HIV Research Collaborative (Cisgender & Transgender Women)

Ongoing Engagement:

  • Assess protocols underway or in development across networks that include or are specific to pregnant and postpartum women.
  • Highlight HIV stigma as a mental health hazard for women and girls with HIV.
  • Partner with women-centered organizations that focus on healing and post-traumatic growth.
  • Cultivate partnerships with the Martin Delaney Collaboratory and other organizations working on HIV cure research.
  • Join the Legacy project’s efforts to harmonize activities across the minority investigator programs of the ACTG, HPTN, and HVTN, and IMPAACT.
  • Identify potential new WHRC members in and outside the NIH-funded HIV/AIDS Clinical Trials Networks.
  • Invite new WHRC members to participate in regular calls and WHRC events/activities.
  • Cultivate leadership within the WHRC membership with a focus on historically underrepresented voices.
  • Convene some of the female study chairs to discuss differences across Networks in conducting women-specific studies.
  • Partner with local and national organizations to promote scientific developments in HIV prevention and treatment.

Impact Activities:

  • Highlight the dapivirine ring and other PrEP modalities for women through webinars or local events and/or regional and national conferences.
      • Draw attention to the development of multi-use products with HIV prevention and contraceptive properties.
  • Partner and strategize with organizations interested in addressing and promoting the participation of pregnant and postpartum women in HIV treatment and prevention trials;
      • Submit abstracts to conferences/meetings
      • Develop a webinar or Twitter chat.
  • Host a collaborative webinar exploring the links between mental health, trauma, gender, and HIV acquisition.
  • Craft a policy statement or community report based on conclusions from the 2016 WHRC Women & HIV Cure webinar series.
      • Share a recommendations document with leadership and key staff of the Division of AIDS Clinical Trials Networks and the general public.
  • Develop a webinar on assessing for intimate partner violence in the HIV clinical research setting and using a trauma-informed approach as a way to enhance cultural responsiveness, outreach, recruitment, and retention of women in clinical trials.
      • Have a guest blogger write a post-webinar reflection for a public blog website such as Medium.

 

House-Ball Communities

Ongoing Engagement:

  • Consult/collaborate with all of the NIH HIV/AIDS clinical trials networks, the Women’s HIV Research Collaborative (WHRC), and Community Partners to identify research priorities.

Impact Activities:

  • Collaborate with House Ball Project community partners to build on the findings and recommendations of the National House Ball Community Change Project to increase awareness and support for HIV/AIDS clinical research among house/ball communities nationally.


Faith Communities

Ongoing Engagement:

  • Conduct capacity building and HIV scientific literacy training with faith initiatives to increase culturally appropriate messengers who value research environments and support clinical trial participation. Activities will be evaluated on their ability to provide opportunities to remove obstacles to spiritually-informed HIV education.

Impact Activities:

  • Provide input/technical assistance in the work of the Faith Initiative for Black HIV/AIDS Awareness Day 2018, The Week of Prayer 2018 and USCA 2018.
  • Host community-focused webinar on stigma and discrimination related to religion, faith, spirituality.
  • Utilize the Framework for Dialogue tool to engage faith leaders and people living with HIV to address stigma and discrimination.


HBCU Initiative

Ongoing Engagement:

  • Establish collaborations with the medical schools at historically black colleges and universities (HBCUs) Meharry, Charles Drew, Howard and Morehouse, to help address/eliminate HIV-related disparities and stigma.

Impact Activities:

  • Collaborate with HBCUs, to build on the findings and recommendations of the HBCU Project to increase awareness and support for HIV/AIDS clinical research among HBCU faculty and students.


Latinx Communities

Ongoing Engagement:

  • Establish and/or enhance site-level linkages/partnerships with Latino/a communities focused on addressing disparities, health and social issues in the context of HIV among Latinos and Latinas, including Hispanic Serving Institutions.

Impact Activities:

  • Invite Latinx researchers and Latino Commission on AIDS to collaborate with Legacy on NAESM workshop presentation and future webinars and calls.  


Native Communities

Ongoing Engagement:

  • Develop strategies to establish linkages/partnerships with Tribal Colleges and Universities (TCUs) focused on addressing disparities, health and social issues in the context of HIV among Native Americans.

Impact Activities:

  • Host community-focused webinar on Native American engagement in HIV/AIDS clinical trials.
  • Disseminate the guidance document for engaging Native American communities based on the experiences of the Native American Engagement in HIV Clinical Research Project.

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