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Legacy 2017 Work Plan

Legacy 2017 Work Plan

The Legacy Project seeks to increase knowledge about HIV clinical prevention and therapeutic research, cure research, scientific literacy, and participation in HIV/AIDS Clinical Research among the most disparately impacted communities in the United States.

The Legacy Project 2017 Work Plan is in line with the 2016 NIH HIV/AIDS Research Priorities and Guidelines for Determining AIDS cross cutting areas of basic research, health disparities and training including: Research to reduce health disparities in the incidence of new HIV infections or in treatment outcomes of those living with HIV/AIDS; Research training of the workforce required to conduct high priority HIV/AIDS or HIV/AIDS related research; and addressing health and social issues that are clearly linked with HIV (transmission/acquisition, pathogenesis, morbidity and mortality, stigma) in the context of HIV (i.e., in populations or settings with high HIV prevalence or incidence).

The Legacy Project will work to pursue funding opportunities to continue its valuable work.  Legacy’s continued success depends on the support and cooperation of DAIDS and the networks. Legacy will continue to work to coordinate activities and meet the following objectives outlined in the following Legacy 2017 Work Plan.


 

Legacy Project Objective #1: Facilitate collaborative (community, site and network) involvement throughout the research process among the NIH HIV/AIDS clinical trials networks.


 Strategies and activities to support this objective:

  • 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.
  • 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.
  • 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.
  • Maintain relationships with network communications and community engagement staff in collaboration with Community Partners and the HANC-facilitated Communications Working Group.

 

Legacy Project Objective #2 Provide information exchange to enhance collaboration and identify additional engagement topics/issues in the field.

Strategies and activities to support this objective:

  • Maintain collaborations/partnerships with former Be the Generation (BTG) partners and select CBOs and ASOs across the U.S.
  • 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.
  • 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.
  •  Utilize the Framework for Dialogue tool to engage faith leaders and people living with HIV to address stigma and discrimination.
  • 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
  • Host community-focused presentations on women and PrEP, basic prevention and scientific literacy, and decriminalizing HIV.
  •  Establish and/or enhance site-level linkages/partnerships with specialized institutions/networks by continuing engagement with the Center for Black Equity Black gay prides (Atlanta, Dallas, and LA) and house/ball communities.
  •  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.
  • 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.
  • 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.
  • Establish formal collaboration with AVAC by inviting AVAC staff member to join Legacy Project Working Group.
  • Invite Martin Delaney Collaboratory to Legacy call or webinar to present on HIV cure research.
  • Develop strategies to establish and/or enhance linkages/partnerships with other Legacy stakeholders.
  • Develop strategies to provide information/messaging focused on HIV treatment.
  • Provide support to HPTN and HVTN in educating communities about the Antibody Mediated Prevention (AMP) Study.
  •  Provide support to HPTN and HVTN in educating communities through increasing awareness and understanding of monoclonal antibodies.
  • Provide support to MTN in educating communities about microbicide research.
  • Provide suggestions to PACHA regarding how to address HIV-related disparities for young BMSM in the southern U.S. where there are few or no NIH HIV/AIDS clinical research sites.


 Legacy Project Objective #3: Share and disseminate information, training materials and resources.

Strategies and activities to support this objective:

  • Coordinate dissemination and promotion of the BTG HIV Prevention Research and Basic Scientific Literacy Modules.
  • Disseminate training materials designed to increase scientific literacy among historically underrepresented communities most impacted by the domestic HIV epidemic.
  • Host community-focused webinars on HIV prevention, treatment and cure clinical research advances in collaboration with the NIH HIV/AIDS clinical trials networks.
  • Provide input/technical assistance in the work of the Faith Initiative for Black HIV/AIDS Awareness Day 2017, The Week of Prayer 2017 and USCA 2017.
  • Disseminate the guidance document for engaging Native American communities based on the experiences of the Native American Engagement in HIV Clinical Research Project.
  • Host community-focused webinar on Native American engagement in HIV/AIDS clinical trials.
  • Host workshops/presentations at the National Pow Wows, NASEM, APHA, USCA 2017 and other meetings/events aimed at improving community research literacy and support for 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 among high risk populations at meetings/events.
  • Host community-focused webinar on stigma and discrimination related to religion, faith, spirituality.
  • Submit abstracts to present findings from HBCU and House Ball Projects to APHA, NAESM and USCA.
  • Host events through CATA to raise scientific literacy about HIV and scientific research in underrepresented and disproportionately affected communities.
  • Publish and disseminate results of the HBCU Lincoln Project and the House Ball Project.
  • Oversee publication of quarterly BTG e-newsletter in collaboration with the HPTN, HVTN and MTN.
  • 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.


 

Legacy Project Objective #4: Review topics across networks; identify areas where there are gaps and/or opportunities for improvement and work in collaboration with network leadership and DAIDS to address those issues.

Strategies and activities to support this objective:

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

 

Legacy Project Objective #5: Provide culturally appropriate guidance and leadership in development, implementation and dissemination of information about HIV research focused on and responsive to the needs of women and girls.

Strategies and activities to support this objective:

  • Increase awareness of HIV prevention modalities for transgender and cisgender women. 

o    Establish relationships with women-focused prevention initiatives, programs, and studies such as Philadelphia and New York Women & PrEP study.

o    Highlight the dapivirine ring and other PrEP modalities for women through webinars or local events

o    Invest in a presentation or paper on hormone use, pregnancy, contraception and guidelines and HIV prevention products for women

o    Gather and present data on the vaginal microbiome and HIV susceptibility

  • Increase awareness of the intersection of disability and HIV with a focus on mental health in women and girls.

o    Host a webinar exploring the links between mental health, trauma, gender, and HIV acquisition

o    Highlight HIV stigma as a mental health hazard for women and girls with HIV

o    Present data from the AMP study and other studies that have measured mental health and its impact on HIV prevention and treatment for women and girls

  • Advocate for the meaningful involvement of women in HIV cure research

o    Craft a policy or activist recommendations document based on conclusions from the 2016 WHRC Women & HIV Cure webinar series 

o    Share a recommendations document with the Division of AIDS Clinical Trials Networks and the general public

  • Engage in efforts to curb the effects of gendered violence on HIV acquisition with a focus on transgender and cisgender women

o    Develop a policy recommendations document on assessing for violence in clinical/behavioral research settings 

o    Present a recommendations document to the Division of AIDS Clinical Trials Networks

  • Increase the social media presence of the WHRC to reach a broader and younger audience

o    Develop a WHRC twitter account to promote the WHRC’s activities

o    Develop a WHRC blog site to feature the work of the WHRC, stories from WHRC members, and guest bloggers whose visions align with that of the WHRC

  • Promote increased representation of women scientists in the field of research

o    Partner with Centers for AIDS Research that are engaged in promoting the work of women in research

o    Host discussions with other women-focused health and STEM organizations

  • Recruit new WHRC members with a focus on transgender inclusion

o    Identify potential new members in and outside the DAIDS clinical trials networks

o    Invite new members to participate in regular calls and WHRC events/activities

  • Establish collaboration with the Black Women’s Health Imperative
  • Utilize Community Partners to help promote the Legacy Project practices to address disparities, health and social issues in the context of women and HIV which can be applied in various populations and settings globally with high HIV prevalence or incidence.

  

Legacy Project Objective #6: Build out BTG website content and updates in collaboration with the HPTN, HVTN and MTN.

  • Restructure BTG website content and update content in collaboration with the HPTN, HVTN and MTN.
  • Maintain and promote the BTG Google Group to facilitate communication among the former BTG B partners.


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