HIV Related Intersectional Stigma Research Advances and Opportunities Workshop
Dr. Paul Gaist: Well, a big welcome to everyone who's joining us today. This is the open report-out session of the NIH OAR and NIMH organized HIV-related intersectional stigma workshop that has been ongoing over the past several months. Welcome, and thank you for your interest in this vital topic and in the reports that you will hear today.
With over 1,000 of us attending this session today, the core planning team for the workshop, Dr. Greg Greenwood, Ms. Amber Wilson, and myself will start the session off with some background on the workshop itself, so everyone is on the same page for the presentations that will follow. If we could have the slide with the overview. Thank you very much.
The co-chairs for the workshop, Dr. Maureen Goodenow from the NIH Office of AIDS Research and Dr. Dianne Rausch of the National Institute of Mental Health. She's the director of the Division of AIDS Research. The goal of the workshop has been, and this session is to promote HIV prevention and treatment science, as well as inform the Ending the HIV Epidemic Initiative and HIV efforts worldwide through furthering HIV-related intersectional stigma and discrimination research advances and opportunities. Next slide.
The workshop has key approaches. We brought together researchers, government officials, and community partners to discuss and develop these points here. I'm not going to read each one, but I'd start: Develop a common understanding of the concept of intersectional stigma and discrimination within the context of HIV prevention and care. Harmonize methods and measurements. To identify opportunities within, across, and beyond EHE jurisdictions to do monitoring. Highlight the evidence-base of current interventions. To integrate and tailor intersectional interventions to advance EHE goals and improve HIV prevention and treatment outcomes overall.
Ultimately, to outline next steps to address research opportunities and advance implementation plans.
As you can see, we pose lofty questions for the workgroups to address. They work diligently and made advances in their deliberations and add clarity that also offer new questions or reframe old ones. We look forward to hearing more from them today in this session regarding their takeaways, as well as their assessment of work that still lies ahead. Next slide, please.
The workshop itself was set up to have three phases. Today is Phase III, but I'm going to turn the discussion over to Amber Wilson, who's going to talk about Phase I. Amber.
Ms. Amber Wilson: Thank you, Dr. Gaist. As stated earlier, the workshop included three phases. The Phase I meeting took place earlier this year on July 13th and included scientific presentations and moderated discussions. Next slide, please.
The Phase I meeting began with opening remarks from co-chairs, Drs. Goodenow and Rausch, as well as Dr. Joshua Gordon, who is the Director of NIMH, and Mr. Harold Phillips, who is the Senior HIV Advisor and Chief Operating Officer for EHE. After opening remarks were received, moderated panel presentations were given on intersectional stigma and discrimination, conceptual frameworks, and community perspectives.
Moderated panel presentations and discussions continued later that afternoon with leading researchers and focused on intersectional stigma measurements and intervention development. The Phase I session was recorded, and that link will be made available soon. Next slide, please.
Phase II of the workshop involves four virtual interactive workgroups. Each workgroup met three to four times, diligently working in between meetings from July to September. The workgroups addressed key questions pertaining to HIV-related intersectional stigma, as well as develop summary reports and presentations which will be the foundation of all post-workshop deliverables. Representatives from each workgroup will provide a report out presentation that you will receive later on today. Next slide, please.
Each of the four workgroups had their own separate but related charge. Workgroup one focus on the harmonization of methods and measurements for this area of science. Workgroup two was charged with identifying opportunities within, across, and beyond EHE to monitor intersectional stigma. Workgroup three focused on highlighting the evidence-base of intersectional stigma reduction interventions, and workgroup four efforts centered on discussing ways to integrate and tailor intersectional interventions to advance EHE and improve HIV outcomes. Now, I will turn it over to Dr. Greenwood, who will cover Phase III.
Dr. Gregory Greenwood: Thank you so much, Dr. Gaist and Ms. Wilson. Next slide, please.
Now for the focus of today, our Phase III, our final report-out, which is open to the public, and we welcome you. The main focus of today's webinar is to hear from the four workgroups. We'll hear from each of the four workgroups with a moderated discussion. Before that, we'll have just three sets of brief sets of talks. First, we'll hear opening remarks. Second, we'll hear a conceptual overview on intersectional stigma. Then, third, we'll hear some brief highlights from our Phase I meeting on July 13th. Next slide, please.
Following the workshop, we will be posting, not only the Phase I webinar presentation from July 13th but today's presentation. We'll be preparing a full workshop report with all phases integrated. We'll be preparing several dissemination pieces for communities around Ending the HIV Epidemic, as well as just promoting intersectional stigma and discrimination research. We are hoping to publish a scientific journal supplement that would feature a number of the key areas of discussion from this workshop.
Overall, our hope is really to expand the level of understanding, identify community and research needs, and accelerate knowledge generation, translation, and implementation. Let me turn it back to Dr. Gaist. Thank you.
Dr. Paul Gaist: Thank you, Dr. Greenwood. It is my pleasure, my honor, to introduce my boss, to introduce Dr. Maureen Goodenow. Dr. Goodenow is the NIH Associate Director for AIDS Research and the Director of the NIH Office of AIDS Research. In these roles, she has responsibility and stewardship to guide and manage and innovate the NIH HIV research program.
She has been doing this work at the NIH and in these roles for the past four years. I started working with her from the time that she began at NIH. I can say, knowing the research program for quite a number of years, that she has come in and has done exactly that- has taken her stewardship seriously and has innovated the program to move it forward. With that, I turn the floor over to Dr. Goodenow.
Dr. Maureen M. Goodenow: Well, good day and thank you very much, Paul, for that introduction. On behalf of co-chair, Dr. Dianne Rausch, and senior HHS official for Ending the HIV Epidemic, Mr. Harold Phillips, I welcome you and thank you for joining the HIV-Related Intersectional Stigma Research Advances and Opportunities Workshop. Next time, Paul, it has to be fewer words.
It's really great that so many of you are here from so many important sectors and areas of interest and impact. We trust that you are safe and well during these challenging times.
To say, this workshop is timely is an understatement. Once again, long-standing racial, social, and economic inequities are at the forefront of our lives. Manifested not only through HIV-related but also COVID-related health disparities, as well as deep-seated social injustices stemming from hatred, misunderstanding, discrimination, and brutality.
Community members and researchers have long discussed intersectional stigma and discrimination. Systemic and institutional policies ingrained in civil society are also public health issues that affect the well-being of individuals and communities.
In particular, HIV-related stigma is a critical barrier to the prevention, care and treatment of HIV. Stigma impedes access to an uptake of effective tools to prevent HIV transmission as well as to fully achieve positive health outcomes and quality of life for people living with HIV. Moreover, HIV-related stigma intersects with multiple independent aspects of life, social identities, and positions. However our understanding of intersexuality within the context of HIV remains limited.
As a leader in health research and NIH has the mission and responsibility to continually secure the evidence needed to achieve new ways to improve people's health and keep them free from harm and disease. This includes addressing the health disparities that prevent many from experiencing the full and complete life they hope for and deserve.
Within that mission, the NIH office of AIDS research has lead responsibility in managing and advancing the NIH HIV/AIDS research program conducted across NIH Institutes, Centers, and Offices.
The NIH HIV/AIDS research program has overarching priorities that are outlined in the NIH Strategic Plan. The five-year plan for FY21 to FY25 that is just becoming effective, intersectional stigma research is captured through the cross-cutting priority area of behavioral and social sciences and is relevant to all other overarching priorities.
Researchers have started to elucidate the effects of intersectional stigma at the individual, community, and structural levels. Findings are laying the foundation for the implementation of HIV intervention, services, and programs that move beyond considering stigma as a unidimensional to addressing various forms of marginalization at the intersection of factors such as race, gender, sexual orientation and socioeconomic status. Critically, it is essential to build on what we already know about intersectional stigma to identify and quantify its breath and importantly, develop and test effectiveness of interventions.
The overall goal, research that addresses interventions and solutions that mitigate the individual and systemic factors contributing to stigma, it's intersectionality, and complexity. Today you will hear about the deliberations of key experts and stakeholders and their thoughts about where we are and at least some of what we need to do to address the challenges of HIV-related intersectional stigma in our research, programs, and policies for improving the health of people with, at risk for, or affected by HIV. Today's meant to be a dialogue and an opportunity for you to provide your questions and thoughts during the time planned for questions and answers and comments.
It is now my pleasure to introduce my workshop Co-chair and colleague, Dr. Dianne Rausch, who will also give a few opening remarks. Dr. Rausch is the Director of DAR, the Division of AIDS Research in the National Institute of Mental Health at the NIH. NIMH, the National Institute of Mental Health is the lead federal agency for research on mental disorders. Dianne leads DAR and its research portfolio of HIV-related basic and clinical research to transform the understanding and treatment of mental illnesses, paving the way for prevention, recovery and cure. She is also the Director of NIMH's Center for Global Mental Health. It's my pleasure to turn this over to you, Dianne.
Dr. Dianne Rausch: Thank you, Dr. Goodenow and for your introduction, for your co-chairing this important workshop and welcome everyone.
I'd like to start with a brief introduction about the Division of AIDS Research at NIMH. So next slide please.
The mission of the NIMH Division of AIDS Research is to reduce the incidence of HIV/AIDS worldwide and to decrease the burden of living with HIV. We support research that encompasses a broad range of studies from basic and clinical neuroscience to basic and applied behavioral science within the context of HIV prevention, treatment, cure and across the lifespan. Next, please.
Stigma has been a longstanding area of emphasis within our defined priorities with the goal of understanding and addressing the impact of HIV-related stigma and other social determinants of health as they relate to improve HIV prevention and treatment for populations at substantial risk of HIV acquisition or transmission. Next slide, please.
A little history about how we got here. While there had been ongoing interest in stigma research since the beginning of the epidemic, a renewed interest in 2013 resulted in NIMH and its community and federal partners publishing a series of papers in the journal and the International AIDS Society on HIV-related stigma, examining the state of the science and identifying key gaps in measurement, challenges and intervention research and community prevalence.
Following these publications, an interest group was formed and began to plan a meeting which ultimately resulted in the White House meeting on HIV stigma, which was convened in 2016 by the NIH Office of AIDS Research, NIMH and the Office of National AIDS Policy. The focus of this meeting was on interventions, measures and actions and from the discussions, the importance of the intersection of HIV/AIDS stigma with other forms of stigma and discrimination emerged as a very high priority. This included stigma related to sexual orientation, gender identity, mental illness, substance use, socioeconomic status, race and ethnicity. Next slide, please.
In June 2017, the Fogarty International Center and its NIH partners hosted a three-day workshop to further refine the agenda for stigma research and global health, bringing together researchers, policy makers,and program implementers to focus on reducing health-related stigma.
Inspired by this meeting, in March 2019, Fogarty sponsored a series of articles titled Collection on Stigma Research and Global Health and was published in the journal BioMed Central. This important body of work calls for stigma research to be broken out of the silos that focus on a single condition or population and instead develop new scientific approaches that cut across illnesses, demographics and scientific disciplines. These scientific research gaps and priorities were articulated. Next slide, please.
Building on the momentum of the 2019 BMC stigma collection-- Next slide, please. NIMH along with some of its partners at NIMHG, NINR and OBSSR funded eight research awards as part of the prison RFA. The goals of this initiative or to advanced measurements of intersectional stigma and examine the mechanisms and pathways by which it impedes prevention outcomes and develop and test interventions to improve HIV prevention outcomes among target populations in the US and worldwide.
Thus in 2020 the idea for this workshop took shape to promote HIV prevention and treatment science as well as inform the End the HIV Epidemic Initiative and HIV efforts worldwide. As you will hear, the goals are to rigorously focus on the science of HIV-related intersectional stigma and discrimination in order to further advance research and identify opportunities for integrating an intersectional stigma approach.
Finally, as we have all witnessed, this workshop is taking place during an unprecedented year. When the consequences of structural racism were laid bare by something new and something old. That is a novel coronavirus has taken a heavy toll on Latinx and African American communities and long-standing and deep-rooted structural racism against African Americans. Collectively, these events offer us an uncommon opportunity to think critically about social processes like racism and intersectional stigma and discrimination. Next slide, please.
You can't see this very well but a tweet by the NIH Director, Dr. Francis Collins on June 10th offers some very clear and compelling guidance for our workshop. Next slide, please. He noted that we need to look unflinchingly at the source of health disparities and structural racism and embrace the challenge and enlist the vision and talent all around us. He states, "We're reliable, capable, and resilient because of our many races, ethnicities, cultures, faith, gender identities, sexual orientations, ages, abilities and backgrounds. Now is the time more than ever to harnest bold new ideas and approaches."
With that, I would like to turn this over to Harold Phillips who works in the Office of AIDS and Infectious Disease Policy at the office of the Assistant Secretary for Health at the US Department of Health and Human Services as the Senior Advisor and Chief Operating Officer for Ending the HIV Epidemic, a plan for America. Harold, it's yours.
Mr. Harold Phillips: Okay. Thank you, Dianne and thank you also to Dr. Greenwood, Dr. Gaist and Dr. Goodenow. I remember and you may also recall this, Dr. Rausch, you and I and Dr. Goodenow in a taxi racing through Chicago rush hour trying to make it to O'Hare airport, trying to beat the storm as well as the rush hour traffic, and you talking about almost a year ago this meeting and what you hope to accomplish. Congratulations to you and the NIH team for what you've been able to accomplish. Who knew at that time that we would be doing this virtually and that the topics would be so timely and so front burner for many of us doing this work and all across American society at this time.
I'd also like to thank the workgroup for the important work that you are doing. Not only is it important and relevant for our efforts to end the HIV epidemic, not only is it important for me and my role as Chief Operating Officer but also as a black gay man living with HIV, the topics that you have delved into the research and what you are about to give us is so important. It will impact care and prevention across the continuum. It will impact lives.
When we talk about stigma and discrimination it has an impact that-- I remember the first time that Laura Nyblade [unintelligible] and Greg talked about the fact that we could measure it.
Many of us as people of color, many of us living with HIV, those of us that are at risk for HIV have experienced it. We've been able to feel it but the fact that we now know that we can measure it-- That was a great gift that I remember at that PEPFAR meeting shouting as I raced back to HRSA and talked about the fact that stigma and discrimination can be measured, we can measure its impact and therefore if we can measure its impact, then we can actually do something about it. Then we can develop tangible interventions that can be applied, that can be addressed, and we can measure its impact. We can evaluate it and we can change the course of service delivery and therefore impact health outcomes.
This work is also so important. Thank you and I guess I'll go to the next slide which talks about the EHE pillars. The impact of the work that you have done will impact and help assist us across the pillars. Also help us in reaching our goal of the 75% reduction within five years and a 90% reduction within 10 years.
Next slide which talks about our dashboard and our indicators and our ability to be able to measure like I mentioned earlier, and the great gift that I felt had been given to me that day at that PEPFAR meeting to be able to think about stigma and discrimination in new and different ways. Next slide.
With EHE we have specific indicators that we are looking at and I know that what the work group has explored, we will be thinking about how do we apply it and how will we use it to measure our progress that includes the progress on the six EHE indicators that are here on the slide. Next, please.
We now have a responsibility because we know that we can have an impact, because we know it can be measured, and because we have done the research. We have an obligation to the community that has helped and has been waiting for this. To ensure that it means changes in policy, in programs, and service delivery. and changes in culture.
This slide I've borrowed, stolen from the American Medical Association, it really truly points to our next steps. Now that we have the research and the evaluation, we need to ensure that it is applied at the local level. That insurance is something that the community is going to hold us accountable for because as we shop this great news about the ways we can impact stigma, discrimination, and racism in healthcare settings, they're going to begin to demand that we do something about it.
Those changes in policy, programs, services and culture are necessary and needed as we look to apply the science which the work groups have worked so diligently on creating for us. With that, next slide, I will end my comments. I look forward to the discussion as was said earlier and I look forward to working with us all to ensure that we can improve the health outcomes and reduce the impact of stigma and discrimination in healthcare settings. Thank you.
Dr. Gregory Greenwood: Next slide. Let me introduce to you Carmen Logie from the University of Toronto and Chelsea Gulden from RAIN, Incorporated. Carmen and Chelsea if you'd like to turn on your videos. Next slide, please. Carmen and Chelsea will be providing an overview on the concept of intersectional stigma and discrimination. Carmen and Chelsea, if you could turn on your videos and your mics please and take us away.
Dr. Carmen Logie: Thank you so much. I'll be starting and then Chelsea will finish. Thank you for inviting us here today. Professor Kimberlé Crenshaw coined the term intersectionality 31 years ago to center the experiences of Black women at the intersection of racial and gender discrimination. In a 2017 interview, she described intersectionality as a lens through which we can see power colliding, intersecting, and interlocking. She also cautions about using intersectionality as a, "grand theory of everything or getting bogged down by thinking of the concept is so complicated that it immobilizes us." Next slide, please.
Through intersectionality also trace back to the Combahee River Collective, a collective of black feminists meeting in the 1970s. This quote is well known for- I'll just read the first sentence. "We are actively committed to struggling against racial, sexual, heterosexual and class oppression," and "the major systems of oppression are interlocking." The end of this full statement is a reminder that, "We have a very definite revolutionary task to perform and we are ready for the lifetime of work and struggle before us." This Combahee River Collective foregrounded the struggle in community and love for self and others. Next slide, please.
Dr. Lisa Bowleg in her earlier presentation at one of the workshops, reminded us that these concepts travel even further back as clearly articulated by Sojourner Truth in her Ain't I a Woman? speech. Next slide, please.
Intersectionality today has been largely seen to conceptualize the ways that intersecting social categories at the micro level individual experience reflect larger systems of both privilege and oppression. Next, slide please.
We also conceptualize stigma as multilevel, as rooted in the structures of our social, economic and political environments and resulting in devaluation, discrimination and reduced opportunities that further entrench inequality and prevent people from realizing their full freedom and their full potential. Next slide, please.
When we bring together intersectionality and stigma conceptual frameworks which we're doing today-- Next slide, please. We can see that there's been much discussion over the past near decade on this topic. Our 2011 work which is in the figure presented here with women living with HIV in Canada, revealed how multiple forms of stigma, just for instance, sex-work, related racism, homophobia and transphobia, sexism and gender discrimination in addition to HIV stigma, converged and spanned micro, meso and macro levels. At the same time, across these levels there was resistance, there was solidarity and social support, and there was resilience. Next slide, please.
We are working on an integrated conceptual framework as Dr. Anne Stangl presented in an earlier workshop. There are several challenges we're still grappling with how do we address more than one health issue? How do we not get stuck on focusing just on psychological processes? How do we look at multiple intersecting issues? How can we conceptualize people as both stigmatized, stigmatizer, and actually moving beyond those distinctions? As part of the earlier BMC medicine special NIH Fogarty issue, as you can see in the next slide-- Next slide, please. Dr Anne Stangl lead a team of us in producing integrated conceptual health and stigma discrimination framework. Next slide, please.
I'm turning it over to co-presenter, Chelsea.
Ms. Chelsea Gulden: Thank you. As you can see, we have brought out several tensions, this was brought out by both Lisa Bowleg and Anne Stangl also in their work. This one is really about language, and whether discrimination or inactive stigma and structural stigma framing better get at which one we are looking at. I do think that neither one is right, they are just different. Next slide, please.
This one also focuses a little bit on language, but really, at an individual level or a structural level. I work at a nonprofit in Charlotte, North Carolina. We do not have the resources for doctorate levels. When we engage in research from our community, a lot of times we see this stuff come out of the research field and we are focused so much on the individual and these outer structures and barriers impact those interventions.
If you look at the bottom, if we shift our gaze, and we were to look at the root of the causes versus the individual level, I think oftentimes we get overwhelmed at how do we measure that and if it is too complex to be funded. Next slide, please.
This is also my favorite slide. This third tension that we brought together is really around if we're missing the mark by leaving out a more strength-based approach. I think oftentimes, we get caught up that stigmatized identities are inherently negative when they are not. They can bring opportunity and resilience and a lot of benefits to an individual. Sometimes those are not always seen in the interventions that we create or implement.
I think that at an organization doing the interventions, we often have to infuse those strength-based moments because a lot of what comes out is all of the barriers and all of the problems. That comes out in the research, it comes out in our outcomes but we're missing how to use that and how to make sure that that is overwhelmingly put into our work.
Next slide, please.
There are many considerations. Some of these we've already talked about. Some of them have been brought out and previous and some of them will be brought out in future presentations. I do think that the one thing that we forgot to put on this slide is how do we measure.
I think we've heard that we can measure, but a lot of times, organizations and the people who have the community and the populations that we're looking at our fingertips on a daily basis and we work with them on a very intimate level. We don't have the structure, the resources, or the advancements to be able to accurately produce outcomes that are not in combination our partnership with researcher or higher-level education institute. Next slide, please.
Dr. Carmen Logie: I'll just finish by saying we looked at the presentations that are forthcoming and tried to pull across some of the themes and so we came across five overarching themes that you'll be noticing across presentations. They include the need for a focus on policy, practice, and structures a need for integration of community engagement and expertise across research stages, consideration of history, context, and variability of people's experiences, shifting from the individual towards the stigmatizing systems in our measurement and interventions.
Finally, how do we balance attention to oppression and vulnerability with attention to agency and resistance? The next slide, please. Just focus on thanking everybody for inviting us here today.
Dr. Gregory Greenwood: Great, thanks so much. Really appreciate Carmen, and Chelsea. Next slide and I'd like to introduce Marcia Ellis. She's with the DC Center for AIDS Research. Marcia, if you could turn on your video and microphone and provide an overview of the community perspectives.
Ms. Marcia Ellis: Thank you, Greg. I want to thank you so much for this very humbling task of providing some highlights from our most esteemed and engaging panel that presented the community perspective on intersectional stigma and discrimination. I'm sure that the panel and you join me in thanking all those who came before us and who are still with us making it possible today for community to be centered in these discussions. Next slide, please.
You see the panelists, the very same panelists who collectively bring many years of professional experience working in and with communities addressing health disparities, intersectional stigma, and all aspects of HIV. They are leaders in agencies and CBOs addressing HIV, they are published researchers and academicians, they are artists and social justice advocates and activists, and they work passionately, domestically, and globally. They bring their years of lived experiences to their work and what they presented in Phase I of this workshop.
There were several things from their presentations that I will highlight here in a few minutes, things that are actually aligned with much of what was said that those who spoke before me. Next slide, please.
There was the theme of why intersectional stigma and discrimination research is important. Some of this was said by Dr. Goodenow and others economic disenfranchisement, racism, sexism, homophobia, transphobia, and xenophobia converged to hurt health, is important because the social nature of health disparities is often ignored or misunderstood, leaving marginalized groups to be disproportionately impacted by the burden of disease.
It will enable HIV research and care to more closely mirror the lived experiences of the communities to which researchers are accountable. It looks at social characteristics like class or economic status systems and structure and through a rights-based lens.
Race, gender, class, and sexual orientation are not separate identities. The identities are experienced holistically and intersectionally and identities sometimes change. Stigma is not theoretical, it is real. Next slide, please.
The role of community and importance of lived experience. Community can articulate problems and theories about the nature of those problems and are closest to some of the best solutions. Community through their experiences and observations expose power imbalance underlying health disparities and partnerships that are formed to respond. Communities can bring hope, are committed to opportunities and could be partners in raising and addressing challenges. Community can be points of reference in leading, framing, and elucidating discussions.
It is important to center and acknowledge Black feminist thought and Black women's intellectual labor and laying the foundation for these important discussions. People living with HIV are a critical voice that bring valuable lived experiences that must be in beneficiaries of HIV research. Next slide please.
Centering community and addressing the power dynamic. Effective communities should be equal partners throughout the research and engagement process in policy and in practice. We need to change the power dynamics so that we can contribute our thoughts, craft the knowledge transfer process, and build our own capacity to collect and share data.
Community leadership is important especially with regard to stigma because of the power dynamic, participatory practice, and strong community voices that may be outside of public health, complement and enhance the discussions, the research, and the practice. Next slide, please.
The use of arts and culture is something very close to my heart. Contributions outside of public health, space, and language should be recognized. Cultural references bring people in by acknowledging their strengths, gifts, and assets and provide a more natural platform for the development, analysis, and acceptance of ideas, though not all by itself. It is important to combine quantitative methods with narratives and storytelling to comprehensively capture the lived experiences of community members. Next slide, please.
Recognize and change the power dynamic. We'll see a lot in the presentations about power dynamic. Intersectionality is not just about how people are devalued. People are empowered or diminished, pro valued as well as devalued. A balanced power dynamic between researchers and community is important to ensure that stigmatized people are not devalued or diminished. Researchers need to responsibly acknowledge their position and think carefully about how that position of power might impact their research.
Researchers are encouraged to think about opportunities for empowerment and resilience present among networks and communities of people living with HIV and strive to comprehensively capture the complexities of those different communities. Remember the researches are also intersectional. Next slide, please.
Leave with some challenges and a bit of hope. There's a need to disseminate information and findings throughout the research and engagement process among the community. We need to translate measurements into concrete actions for faster quality of life and more systemic changes. The work must be translated quickly and responsibly into both programmatic and policy solutions. The hope is to see collaborative, power-balanced and mutually beneficial partnerships between researchers and communities to effectively address intersectional research and discrimination. Thank you.
Dr. Gregory Greenwood: Thank you so much, Marcia. That was terrific. Next slide. Tamara Taggart is up next. Tamara will provide an overview of the measurement. Tamara's from the George Washington University Milken Institute School of Public Health. Hi, Tamara.
Dr. Tamara Taggart: Yes, thank you for the introduction and the opportunity to provide the summary of our initial discussion around measurement of intersectional stigma and discrimination. This slide provides a list of the titles and presenters we heard from during the opening session and rather than summarizing each, I've identified three central themes raised across these presentations. I will begin with identifying gaps in the current evidence base for the theme and then summarize some of the approaches and suggestions for future research. Next slide, please.
Several presentations highlighted the need to develop validated measures of multilevel intersectional stigma. For example, we heard about the lack of adequate measures of structural-level stigma or the policies and institutional practices that disadvantage certain groups, as well as the need to develop measures that assess how social and cultural norms may affect institutional practices and in turn further constrain access to certain opportunities and resources.
Some approaches we discussed included the presentation of a protocol for integrating measures of spatial stigma with frameworks of intersectional stigma, with the overarching goal of developing and validating a measure of multilevel intersectional stigma. One that captures the structural, social and individual-level attributes of the construct.
We also learned about a process for using policy-level measures of stigma and how findings from these applications may facilitate the development of composite measures of structural stigma. Now, an advantage to using these composite measures is that they account for the correlation between different dimensions of structural stigma like laws, social norms, and attitudes which may be useful when developing and evaluating interventions. Next slide, please.
Presenters also highlighted the need to capture the lived experiences of stigmatized groups in relation to enter sectional stigma. Some concerns that were raised included an overemphasis on individuals and negative responses to intersectional stigma and a need to rigorously assess the embodiment of stigma in a biological and behavioral sense of course, but also in terms of a person's narrative and even a community's narrative.
In terms of approaches, we heard about using daily and event-level methods to capture an individual's experiences of intersectional stigma. We then learned how these methods can be used to assess the frequency and type of event as well as how these same methods can be used to assess the social and environmental context in which an event occurs. Similarly, several presentations discuss the need to capture both negative and positive like resistance or resiliency responses to stigma, and perhaps how would that level measurement may support these types of research questions.
Lastly, we heard across multiple presentations and discussions, the need to center communities within this research, including the sociopolitical histories and traumas of stigmatized communities. Next slide, please.
The final theme is around measuring the intersections of intersectional stigma, presenters shared concerns with using some of the available methods for assessing intersectional stigma, as they may in fact be missing the intersectional component. For example, we heard about some of the strengths and potential limitations to using parallel scales to measure multiple identities as an intersectional approach. We also heard about augmenting current measures to capture the processes of intersectional stigma, rather than focusing explicitly on the frequencies or types of stigmatizing events.
In terms of addressing these concerns, we were challenged to think more critically about how do we quantify and weight certain dimensions of stigma. We saw a demonstration using modeling and principles of geometry to quantify intersectional stigma beyond additive approaches.
Lastly, we discussed what may be gained by using indirect questions to measure individual experiences of intersectional stigma. Next slide, please.
Thank you, that concludes the summary of presentations on measurement of intersectional stigma and discrimination.
Dr. Gregory Greenwood: Great. Thank you so much, Tamara. That was terrific and I'd like to introduce Viraj Patel, who will provide an overview of the interventions to address intersectional stigma. Viraj.
Dr. Viraj Patel: Thank you, Dr. Greenwood. I'll be giving a brief summary of interventions designed to address intersectional stigma that were presented on July 13th on a Phase I. Next slide, please.
As we'll hear later today in greater detail, there is currently a lack of evidence base of effective interventions to address and overcome intersectional stigma for different populations in diverse contexts and in diverse settings. What happened on in this presentation is, I'll be giving a- as you'll see, on the next side, there was a large range of interventions that were presented, ongoing interventions, that were diverse in scope and breadth. Many of these interventions that were presented were at the formative and developmental stages, especially appropriate given our lack of a large body of work in this arena. Next slide, please.
This slide gives a summary of some of the interventions that were spoken about, the ongoing interventions, a list of researchers who shared their work with us, the populations of focus in their studies, as well as the primary sociological level of their interventions. I won't be going through each of these studies in detail, but the recording, I think as Dr. Greenwood mentioned, will be available online from that session.
Interventions presented focused on addressing multiple intersecting stigmas, including HIV, sexual orientation or gender identity as well as issues related to socioeconomic and class and racism. Interventions were diverse with respects to targets for change and range from structural or community-level changes, ranged at providers or healthcare-system level factors or at the individual level.
The settings for interventions that you can see were quite diverse with many low and middle-income countries represented and two studies from the United States. Next slide, please. All of these studies were what appeared to be strong community academic partnerships. These teams were diverse with respect to who was represented on the teams, the community partners and how they formed the intervention of developing the interventions.
As mentioned earlier, these interventions focused on different intersecting and interlocking types of stigma, including HIV, PrEP, gender, as well as different types of stigma manifestations including enacted, anticipated or internalized stigmas. All of these interventions had helped service uptake as a primary or a secondary outcome and health service uptake in this setting included HIV testing, PrEP or PEP uptake, as well as HIV care engagement and adherence.
Interestingly, all of these interventions were quite diverse with respect to how they measured intersectional stigma, and their approaches to measuring intersectional stigma for their interventions to detect change. Next slide, please.
Some of the lessons learned or shared from that session included engaging diverse stakeholders early on. This included government stakeholders to ensure that there was buy-in once the pilot phase or the larger study was completed, and that such interventions or strategies could be incorporated into policy. This included engaging stakeholders at the proposal and design phase, a repeated theme that I think we'll hear throughout the presentation, but that we, as a community of researchers, long come to understand the importance of engaging and working with communities and diverse stakeholders early on.
There were several methodological challenges presented in the interventions, which included the ability to disentangle effects of, especially multi-component interventions. For example, components together may be synergistic to be effective, however, on their own may have limited impact. How does an intervention or a research program begin to disentangle these effects and measure the synergistic effects of multicomponent multi-level interventions, which may be also challenging with regards to the resources needed to conduct such studies?
There was also discussion around a need for expanding and testing intervention elements that address or overcome intersectional stigma, which includes testing these interventions or developing interventions for diverse populations, contexts and settings. Even within low- and middle-income countries settings, or higher-income country settings, testing interventions in diverse contexts, within those settings will be important.
One question arose, are there strategies, processes or approaches that are effective, across contexts and populations? What are some common elements or effects of these interventions? Are there common processes that work to overcome stigma, or is it that we really need to be highly tailored in our approaches? Questions that remain unanswered, but I believe that we'll be unpacking later today.
In summary, there were some really exciting and innovative interventions and projects ongoing globally. We look forward to the work that's being produced and the results of these studies. Okay. Thank you.
Dr. Gregory Greenwood: Great, thank you so much, Viraj. Now, the meat of today's webinar, our working group report out, and I'd like to introduce our two moderators, Monica Gandhi from University of California, San Francisco, and Robert Remien from Columbia University. They'll do a quick introduction and then we'll get started with the first workgroup. Monica and Bob, if you could turn on your video and mic and take us away, please.
Dr. Robert Remien: Okay, can you hear me?
Dr. Gregory Greenwood: We can, thanks.
Dr. Robert Remien: As Greg said, this is the meat of or the heart of the remainder of our time together today. We'll be moderating the feedback from these workgroups and the discussion. There'll be a discussion after each one. We'll introduce the presenters from the workgroups one by one as we go through the four workgroups.
You already heard what they were but just to briefly repeat that Workgroup One is harmonizing methods and measurements of intersectional stigma and discrimination. Workgroup Two is identifying opportunities within and across and beyond EHE activities to monitor intersectional stigma and discrimination. The third workgroup is highlighting the evidence base of intersectional stigma reduction interventions. The fourth group is, integrate intersectional interventions to advance EHE and improve HIV prevention and treatment outcomes. Again, we'll introduce the presenters one by one and I'll turn it over to my colleague, Monica, for introduction of our first work group report back.
Dr. Monica Gandhi: Great, thank you so much, Robert. I wanted to introduce Dr. Jonathon Rendina, who's going to be presenting the findings from the first workgroup. Dr. Rendina, is an assistant professor of psychology at Hunter College and director of the very aptly Applied Intersectionality & Minority Stress Lab. He's also in the doctoral faculty of the health psychology and clinical sciences program. He will be speaking today on the first workgroup findings, which they worked very hard on. Please, Dr. Rendina, take it away.
Dr. Jonathon Rendina: Great, thank you so much. I am honored to be here today and to try to do justice in representing the thoughts of many brilliant people who I was happy to join on Workgroup One to think about measurement of intersectional stigma. We're already on my second slide. This is an overview of what I will be presenting today. Next slide, please.
This was our charge, "Harmonize methods and measurements of intersectional stigma and discrimination as they relate to HIV treatment and prevention." Next slide, please.
Related to that, the scientific context behind all of this is that many different frameworks and traditions like intersectionality, minority stress and stigma are being used in unison to try to understand health disparities and inequities.
There has been an increasing focus on integrating theories of intersectionality and stigma together to understand the health effects of stigma at the juncture of multiple marginalized social positions. Some of the foundational qualitative methods that have been traditionally used within intersectionality framework-based research are now being used alongside of emerging quantitative methods for capturing intersectionality. Next slide, please.
This slide shows some of the research questions or guiding questions that were developed to give our working group a guide to what to do. They center around what is an intersectional measurement approach, what are best practices around that, what measures already exist, what are their advantages and disadvantages. What are some key considerations in general recommendations when using quantitative approaches to measure and understand intersectional stigma and discrimination?
I will just give you an honest, upfront information that we actually are not going to be talking about like the best and worst measures, the best and worst ways to analyze quantitative data today. Our group really spent a lot of time still thinking about what it means to conceptualize and approach research from an intersectional perspective. Next slide, please.
This is the team that I had the pleasure of working with, led by doctors José Bauermeister and Deanna Kerrigan. Dr. Valerie Earnshaw will be leading the final written report from this group. We had two amazing note takers, Stephen Bonett and Joseph Carter. Then the rest of the amazing team is listed below. Next slide, please.
We really broke the process out into three different meetings that each had their own purpose. The first meeting was focused really on conceptual issues. The second meeting was focused on data collection and methods and the third meeting was focused on community and stakeholder involvement. Next slide, please. Next slide, please.
Okay, so we started out by thinking about what is intersectional stigma, we were all asked to provide a definition of intersectional stigma. To start out with, the notion of intersectional stigma that we have today integrates multiple, sometimes distinct theoretical and conceptual traditions. In particular, there are many such traditions that may influence individual intersectional stigma, research studies, but some of the main ones are intersectionality, critical race theory, stigma and minority stress. We've heard a lot about the conceptual background of intersectional stigma already today so I will move on to the next slide, please.
This was our group's attempt at defining intersectional stigma research in a way that had as much consensus as possible across a broad and diverse group of individuals. We defined intersectional stigma research as investigating interlocking systems of power and oppression, to understand and combat the causes and consequences of stigma at multiple levels. Doing this by integrating theories and methods from social science and public health, with critical lenses from feminist, critical race and queer theories.
I'll unpack this a bit more as I go through. Next slide, please. We decided to frame our consensus around a few benchmarks that we thought might be helpful for researchers who are thinking about conducting research into intersectional stigma. We came up with three broad benchmarks that we thought really helped to classify what it means to do intersectional stigma research. Next slide, please. I want to start with a few really important considerations, one of which, that we talked quite a bit about is that intersectionality and the term intersectional have become buzzwords.
What we wanted to really highlight is that there is a diverse tradition of stigma research and that not all stigma research is or can be intersectional. We should really make sure that we are being intentional with our use of the term intersectionality and intersectional stigma, and that we are doing this within an intersectional research framework. Intersectional stigma itself is also a construct, stigma is a construct. I really appreciated the first presentation about the joy of realizing that intersectional stigma could be measured. This is really super important that intersectional stigma can be measured.
We may not have a final answer right now on to how that can be done but it should be measured rather than inferred. Things like simply looking at demographic differences are not in and of themselves intersectional and are certainly not intersectional stigma because the stigma piece needs to be measured. Also, acknowledging the lived realities of participants who have multiple and intersecting identities is not the same as using intersectional methods. We could all begin our research by acknowledging these multiple backgrounds that our participants have. That alone doesn't make it an intersectional research study.
We also talked about the terminology of intersectional stigma and whether that was the best and acknowledge that, in many studies, maybe intersectional stigma, as the terminology, is not going to be appropriate. We also talked a lot about caution when it comes towards harmonization. There was a lot of work towards consensus as a result of these working groups, and we did not take issue with the notion of trying to come to a consensus as a field. One of the many ways the consensus often manifests is in the attempt to harmonize measures.
In the intersectional stigma sphere, we felt that harmonization of measures may not actually be the best approach and that that would not be one of the ways to really think about a framework for intersectional stigma research. Then finally, science, of course, is characterized by advances, and so even to the extent that we came up with some consensus, this consensus won't last forever. Next slide, please.
These are our three guiding criteria for conducting intersectional research that I'm going to unpack on the next few slides. The first is really critical that we need to center considerations of power, privilege, and oppression.
The next is that we need to attend to the context in which stigma manifests. The third is that we need to empower communities and individuals to act. Next slide, please.
Centering power and oppression really has to do with moving beyond independent effects and individual-level analyses. Intersectional stigma research is really designed to interrogate interlocking sources of power, privilege, and oppression. The focus of any intersectional stigma study really should be on both of those aspects; that they are interlocking, and that they originate in power, privilege, and oppression.
Intersectional stigma research seeks to understand and intervene upon these throughout all stages of the research process and really, with an eye towards creating social change and equity. Stigmatized individuals have been the primary focus but work really needs to focus on systems and structures, as well as stigmatizers. When I say stigmatizers, I don't mean them as a class of individuals. We all perform stigma, and really, this is about how stigma gets performed among individuals. The heart of this was a discussion around how research that is focused on intersectional stigma, should be thinking about multi-dimensional, multi-level, and multi-directional constructs.
Multi-dimensional meaning that there are multiple forms of interlocking sigma. Multi-level meaning that the stigma manifests across multiple levels, including structures, interpersonal interactions, and individuals. Multi-directional meaning that stigma is manifested not only from systems down to individuals, but individuals can also then influence those systems, and so there really is a multi-directional process that hasn't received quite as much attention in the literature. Next slide, please.
The next really important thing that we talked about is the importance of the context in which stigma occurs, as opposed to just focusing on people who experience stigma. We talked about a range of different contexts, including policy, law, and history, organizations and institutions, spaces, social networks, cultures, and time. The critical race theory concept of centering in the margins becomes really critical here. We need to consider the role of language to amplify the experiences of socially marginalized groups, and shift the focus back to power and oppression, that this is one of the key things that we can use intersectionality for in our research, is to think not just about the experience of stigma within a vacuum, but really rather that stigma is the manifestation of systems of power and oppression, so going back to that first point. Next slide, please.
Then finally, the intersectional stigma research and using intersectionality in research really should have an eye towards empowerment and action. We shouldn't focus only on the negative experiences but also think about the positive experiences. In addition to examining multiple multi-level sources of stigma, also thinking about resilience, but also the resources that are necessary to create resilience, so not making resilience the responsibility of the individual and, again, not focusing just on the individual, but also thinking about resources that are required for that.
CBPR and PAR approaches are critical to this type of work and also the importance that thought leaders within this work, come from multiple marginalized intersectional positions, and partnering with social movements. Thinking not just about research, again, in a vacuum, but what are the social movements that are occurring alongside of that research? How can the research feed into the social movements, and how can the social movements feedback into the research? Next slide, please. Alongside all of this, we talked a lot about different challenges and opportunities. Next slide, please.
The first two that I'll discuss are around resources. We talked about data sources. Access and development of different data sources are necessary, particularly, if we want to really shift the focus up to the structural and systemic level. CDC and other population-based data sets, ensuring that there is better access to those. In particular, in all of these different nationwide data sets or even global data sets, we need geocoded data, things like zip code or whatnot, that would allow for the types of coding that are necessary to focus on structural and systemic factors, while also, of course, protecting privacy.
There needs to be more of a balance there, whereas right now, a lot of data really only have much, much higher level of variables in them to protect privacy. There are significant time and resources that are necessary to code, capture, and measure structural level and policy indicators for research use. It's really critical that we put in the work to get those variables prepared for future research. Also, that nationwide studies really should focus on oversampling subgroups. Population-based data are super important, but population-based data may not have sufficient representation of important subgroups who really embody what it means to experience intersectionality.
The second was training and networking capacity. Intersectional stigma is a complex construct. It's certainly not an impossible construct to understand, but it is complex. What we need is for the next generation of researchers to really come prepared with all of the advanced tools that are going to be necessary to tackle this critical issue. That means both methodological and analytical skillsets, as well as really the important understanding of how to engage communities across the research process. Also, we're not saying that these resources don't exist at all, but oftentimes, they exist in pockets, and those pockets can be difficult for people to find without the right connections.
Next slide, please. The next two challenges and opportunities are really about the impact of the work. One of the things that we focused a lot on was policy, and how we need to think more about policy change. NIH review criteria, for example, around significance in public health, often focus on the implications around practice or individual change, rather than considering things like social and policy change to also contribute to significance in public health impact criteria. That mechanisms like these working groups and like the Prison Funding Opportunity may be needed on an ongoing basis to bring multi-disciplinary expertise, maybe not just researchers, but also bringing in law and policy experts who can contribute to the understanding of these issues, and that new metrics and methods might be necessary to understand the various different contexts that we talked about. For example, social networks.
Finally, that engaging communities, a key theme, and I think across all of the talks today, is critical in all stages of the research process, not just one stage of the research process. Right now, it's really difficult to engage communities in the beginning, in the research formulation process before there's any funding to support that engagement, and also at the end in terms of community sustainment of the research that was done. Also finally, that there's really a lack of leadership roles within research for community and health leaders, so really thinking about maybe people who don't have PhDs but have a wealth of other expertise having really significant investigative roles within various research teams. Next slide, please.
I'll end with a few implications and future directions. Next slide, please. We were asked to think about these within three specific areas, practice, HIV research, and ending the epidemic. In terms of practice, our group discussed the importance of considering policy and social change as significant mechanisms to promote health. Practitioners should think about policy and social change as ways that we can really be promoting health, so not just at the individual level, but also thinking about the importance of the context that we talked about, that funding and resources are needed for local community partners to create and adapt intersectional measures and methods that are relevant for their communities, so the community-led approaches can really exist.
That structural of competence around intersectionality is really necessary within the context of care to ameliorate the exact types of intersectional stigma that we're talking about here. Within HIV research, a compendium of measures would be really important, but not necessarily harmonized measures where we're all expected to use one or two of the same, continued efforts to engage underrepresented early career researchers to ensure intersectional identities are represented among the teams that are doing the research, continued opportunities for funding beyond one-time RFAs like PRISM, which was amazing.
PRISM is going to lead not only to answers, but to new questions, and that we need to take an iterative approach here, and have the opportunity for repeated funding, and dedicated infrastructure for intersectional approaches to health equity. Finally, thinking about ending the HIV epidemic, fostering stronger leadership roles for community and health leaders within NIH funded networks and centers. For example, a lot of the EHE funding was pushed through the CFARs. There was some discussion that community leaders felt like they didn't necessarily have the same access to that funding that researchers within the CFARs did.
Making sure that there really is equity there, as well as greater synergy to promote applied research. Not necessarily doing this through research centers like CFARs, but also partnering with organizations like CDC and HHS as federal partners to really make these funds available for community-based organizations to also do that kind of applied research. Next slide, please.
To sum up, these are the takeaway points. Intersectional terminology should be used when it's intentional and meaningful and shouldn't really be a buzzword.We should continue to focus on increasing the diversity of the biomedical workforce so that researchers with lived experiences are leading the research.We should try to work towards developing a resource guide. This resource guide could contain multiple different things; educational and training opportunities, sources of seed and pilot funding, particularly around engaging communities across the research process, as well as a significant investment in making sure that there are data sets available to conduct this important work, mentorship and training networks to link experts and prepare the next generation. There are some amazing R25s and other mentorship and training networks out there.
Maybe one dedicated towards intersectional stigma would help to do a lot of the work that we really thought about within this working group. Again, incremental and recurring funding opportunities to take an iterative approach to building this area of research. Finally, and super important, consideration of how structural and policy change implications of NIH research fit within public health impact criteria. That is everything from me today. Next slide, please.
Dr. Robert Remien: Thank you, Dr. Rendina. Thank you, Jonathon. That was really a wonderful, very rich overview of the excellent work of your workgroup. I want to remind everyone to please place your questions in the Q&A box. We have several minutes now, where we can entertain questions, and Jonathon can answer your questions. Please, just place them in the Q&A box, and we'll read them and Dr. Rendina will answer them. I am noticing a comment, Jonathon, about your excellent points on utilizing people that may not have PhDs but have a wealth of experience to share. Bravo.
Question from Steve Saffron. "Great presentation. One question though, CDC and HHS, seems so politically motivated now, and now hard to trust what they say or do. How do you imagine partnering community agencies with them unless these agencies become more credible?" Back to the question [crosstalk].
Dr. Jonathon Rendina: An amazing point by Steve. I'm not sure that I want to get too deep into some of the implications of that on this call. The real point there was just that, we need to not only be thinking about these issues through research-oriented organizations but also the ways in which community-based organizations could really lead applied research in this area. Community-based organizations may not have the access to the same resources that research organizations do. The goal there was really just to think about, maybe given your points, CDC and HHS are one of many potential options that we would or wouldn't pursue, but just really thinking about the ways that community-based organizations could be tasked with leading some of this work, as opposed to serving as community partners on the work.
Dr. Robert Remien: Thank you. We have a question from Amara Esther at [unintelligible]. "I didn't hear names of specific tools that are now in use for measuring intersectionality. Can you speak to what tools exist now, and their strengths, limitations? Any one or two would be great for illustration. Thank you."
Dr. Jonathon Rendina: Thank you. That's a great question. An astute observation that that was one of the goals of our working group. As I mentioned when I was on that slide, our working group actually didn't really get into that level of detail and that level of specificity. We didn't really get into the weeds on existing measures because as a group, we felt like there were still so many conceptual issues that needed to be dealt with before we could think about what were existing measures that might be appropriate. In terms of measurement, one of the first steps in measurement is operationalization.
We struggled as a working group with what is the best way to even operationalize intersectional stigma. Even though many of us are doing individual studies where we're doing measurement of intersectional stigma, it remains very experimental at this point. In terms of providing resource, I can mention that Bauer and Scheim recently published and intersectional stigma measure that you should definitely look at and see whether it's appropriate for inclusion within a given study. Our workgroup didn't get down to that level, the nitty-gritty level of thinking about this measure versus that measure, or even reviewing what measures exist.
That being said, I can also say that many of the PRISM R21s do have a systematic literature review as part of their process. Hopefully, within the near future, there will be some publications that do review the existing body of literature and the available measures within the intersectional stigma sphere.
Dr. Robert Remien: We have a lot of questions, so I'm just going to take them as they came in until we run out of time. Question from Karen McKinnon. "Thank you for incorporating training and networking capacity. You mentioned CDC and HHS. Several of us from the Northeast Caribbean AETC are wondering if, how, and to what extent, you're engaging with partner agencies like HRSA to build on AETC's existing dissemination and capacity building infrastructures, as well as for implementation."
Dr. Jonathon Rendina: That's an amazing question. I am not part of any of these organizations or really even part of a CFAR. I don't know if Deanna wants to hop on and respond to this in any way, but this seems a little bit more like a question that might be geared towards NIH officials or leaders within some of these networks and centers.
Speaker 3: I would agree Jonathon, it might be best to enlist some of our NIH colleagues if they might help us out here.
Dr. Robert Remien: I would suggest maybe we move to the next question and an apology. We'll provide a response to the individual. Next question from Amrita Gill. "Thank you so much. I'm a doctoral student at Tulane School of Public Health and Tropical Medicine and will be starting my dissertation focused on intersectional stigma among youth living with HIV in India and wants to know about support for doctoral students." Again, I'm not sure that--
Dr. Jonathon Rendina: Yes, this is probably a great area to connect with a project officer. Greg Greenwood is a project officer at NIMH. Sorry to offer you up Greg, but he might be a great person to email to connect you with people who could talk to you about different funding opportunities.
Dr. Robert Remien: Try and get as many questions in the remaining five minutes. From Raymond Balise, this is more about measurement. "Can you say a bit about plans, suggestions to share standardized instruments? Are you working with products like REDCap to share common data dictionaries?
Dr. Jonathon Rendina: Again, I just want to make sure it's clear that we are not a group that is in any way conducting research together. We were a group that was brought together and convened by NIH to think about these issues. I think many of us are probably working in ways to make our measures available, but not within the context of a network or a center that would have a standardized and centralized system for those types of things. That, to me, also, would maybe be a question where NIH might step in at some point and want to make these types of things available, but the working group itself, I think, would not be relevant for that.
Dr. Robert Remien: Here's a question from Homero Del Pino. "How exactly can we try to measure interlocking systems of power? Different systems in power come into play depending on the individual and context, so how do we measure?"
Dr. Jonathon Rendina: That is the million-dollar question, and the thing that I think requires probably quite a bit more research. That really is the key methodological challenge ahead of us. I think the main point is that we don't have that answer yet, that is this brand-new area of research is really thinking about how do we quantify these things. A few studies have been finished and published, a few more studies are underway, but I think probably that's an area that's going to take quite a bit more investment and research to know the answer to.
Dr. Robert Remien: Thank you, Jonathon. Here's an interesting question from Dr. Lucy Stackpool Moore about time. "Thank you, terrific series of presentations. I wanted to ask more about the context of time, that you mentioned. It's a critical area, in my opinion, that needs more attention. Did you mean through longitudinal approaches to understand how intersectional stigma changes over time for specific individuals or tracking structural processes over time? Would love for you to say a bit more about this."
Dr. Jonathon Rendina: When we mentioned time, it was particularly brought up in the context of development. In terms of human development and the role of thinking about intersectionality over the human life span, but certainly, we would also advocate for longitudinal approaches. In particular, I think longitudinal, the data right now are not great for thinking about these structural issues. I think would be even more difficult to think about structural issues over time, but that would be an amazing end goal, would be to think about a longitudinal study that really looks at policy and structure changes over time, and how they impact health.
Dr. Robert Remien: I'm seeing some questions that are a little redundant. From Pim, "Since stigma and its response is in part learned, and mostly absent in infants, how is the developmental perspectives addressed?
Dr. Jonathon Rendina: That builds nicely on the response to the prior question, which is that we highlight the role of time as a context in which intersectional stigma can and should be considered. That is an area that we are suggesting as a future opportunity, but I don't know that we have the answer to that question right now.
Dr. Robert Remien: This, I'm not sure if Jonathon or Greg may want to jump in, I know there's been a lot of questions, but here's one. "If possible, would you share any resources you might have or know about for HIV research funding in developing countries, particularly in Africa and Latin America?" That's about funding. I actually thought the question was about measurement, but that was the question if anyone wants to comment. I think general funding for research is above and beyond the confines of this workgroup.
Paul Gaist: This is Paul Gaist. One of the other things, as well, I agree, Dr. Remien, this workshop is going to be posting the July 13th presentations, as well as this session today, will be online. Within that, we can discuss about embedding NIH links that take you to funding opportunities and announcements. They're available now, but we can include those links.
Dr. Robert Remien: Thank you. Yes. There are some questions here about the reports from these workgroups. I know Greg has been answering that. There's going to be a distribution of materials from this whole process. Here's a question. "CDC's approach, as is the case in Kenya, has been associated with research that is not locally disseminated. If the intersectional stigma research has to benefit the researched community, then perhaps we need to think about other partnerships that can foster the involvement of communities that are researched to introduce change."
That's really a comment. If you want to comment on it. Dr. Rendina, I think, to this person, you'll hear a little bit about this from workgroup Two. I know that because I've seen the report back from that workgroup.
Speaker 4: I thought this would be a good time to move to a Workgroup 2.
Dr. Robert Remien: Yes, I was just looking at the clock, and we're at that time. Thank you everyone for your questions. Thank you, Jonathon Rendina, for your wonderful presentation. I'm going to introduce the presenter for workgroup 2. I have the pleasure of introducing a friend and colleague, Dr. Sannisha Dale, who is an assistant professor in psychology at the University of Miami. She's a licensed clinical psychologist and the Founder and Director of the SHINE Research Program. SHINE stands for strengthening health through innovation and engagement. Her primary research interests are enhancing our understanding of the relationships between resilience, trauma, and health, outcomes amongst survivors of trauma individuals with, or at risk, for HIV, investigating psychosocial, including microaggressions, and discrimination, and structural factors that relate to HIV health disparities.
Developing effective prevention and intervention strategies to promote resilience and good health outcomes among individuals with HIV, and those at risk for HIV, especially members of the racial minority, communities, and gender and sexual minority groups who are heavily burdened by the HIV epidemic. Also, her work is highly focused on engaging community members and stakeholders in research. By the way, there are larger bios available that people can see for these people. Sannisha, Dr. Dale, thank you very much and thank you for reporting back on Workgroup 2. I now turn it over to you.
Dr. Sannisha Dale: Hi, everyone. Thank you for being here, and for participating thus far. Thank you for the introduction, Dr. Remien. My group focused on identifying opportunities within, across, and beyond ETHA to monitor intersectional stigma and discrimination. Next slide, please. The workgroup consisted of many members. It was definitely a team effort in terms of the amount of expertise that was at the table, and so you could see the beautiful images of everyone who showed up and really contributed their voices and expertise. There are some key members I'd like to highlight.
Lisa Eaton, one of the facilitators, Dr. Remien, one of the facilitators as well, Cheriko Boone was one of our note-takers, Brian Kutner, also a note-taker, and Stefan Baral, who will be leading the final report out. Next slide, please.
These are some of the overarching guiding questions for our workgroup that we used to simulate the discussions that we had throughout the various meetings. One of the first questions was around, what are the key considerations when taking an intersectional approach to implement, and monitoring stigma and discrimination?
What are common barriers or challenges in the research and practice when trying to do this? Are there cases and examples of successful and unsuccessful integration of intersectional stigma and discrimination measures? How could various theories help to guide our efforts to integrate intersectional stigma and discrimination measures? What are the highest priorities, in terms of opportunities, for integrating intersectional stigma and discrimination measures into research practice or surveillance? From here on, you'll hear me refer to intersectional stigma and discrimination measures as ISD (intersectional stigma and discrimination), just for simplicity. Next slide, please.
Right off the bat, in terms of our group discussion, we started to think about what are some key areas for consideration in terms of implementation and integration of ISD measures. There were four themes that came up for us in our discussion right from the start. It was around salience and [inaudible 01:29:00] of intersectionality. Thinking about assessing the attributions that a person associates with their stigma and discrimination experiences, thinking about the magnitude and salience of people's attributes and experiences, rather than just the sole categorization of their identities.
Also, time of recall. This was brought up in the Q&A that just occurred, but we talked about time of recall as being a key consideration. The need to examine the temporality, and the influence of people's ability to recall their experiences. Are we asking about experiences that occurred in the past year, in the past month, in the past week? I know this is something central to one of our current projects that I'm doing. Research practice is another area of consideration that we talked about. What is the appropriateness of the context in which we're doing this work?
Is it strictly within a research environment? Is it within a care setting, or is it within a clinical trial? The modality also mattered, in terms of thinking about the consideration, so what is your modality for collection? Will it be paper or electronic instruments such as using phones, and what will be the type of assessment that you'll be conducting? Will it be quantitative or qualitative? One thing you'll notice here is that my group was tasked with thinking about implementation and integration, but true to intersectionality, we also needed to think about the measures themselves and the context themselves. Next slide, please.
Two other areas of key consideration are presented here. The first one being around community, and participant-focused approach, and this being central to how we have this discussion.For instance, if someone reports that they had a particular experience, what then would you do to attend to how your monitoring has affected them? Who's doing the asking of ISD measures? Having community members help to create and review items are also important, as part of a formative process prior to implementation of measures. The length of surveys and participant burden are key to consider and address. Measures and integration with other data is also something that we thought of as one of our key areas of consideration.
What is the adaptability and fit of the measure to the context? If it actually fit in the key population that's of interest for that organization, and the work that's being done, the types of questions being asked, again, linking back to salience. Are these questions around macro events, that individuals have experienced micro-events, and available public health data that can be used to contextualize new data collected on discrimination and stigma? Going back to one of the reviews done earlier, thinking about things such as the American Community Survey, the census data, and this is something that I do in one of my current studies in terms of looking at data at the census tract level to contextualize these different variables.
Next slide, please. Common barriers or challenges to thinking about implementation and integration of ISD measures was also another area of discussion for us. These were some that we identified as coming up across our various work within this field. Create an objective standard for monitoring ISD across multiple sites of an area of challenge, objections from programs on monitoring ISD, given that many programs have many demands, and so there are naturally going to be objections. How do we work through that? Explaining and defining ISD can take time.
Academic jargon, intersectionality, and discrimination can sound like really big words when we're having a conversation with a lay individual, and it can be a barrier to buy-in. Not being in tune with our own limitations and blind spots as researchers, as Marcia Ellis said earlier, researchers are also intersectional. There's a power dynamic that's consistently at play that we need to consider. Next slide, please. We also highlighted some lessons learned from prior and existing efforts, based on work being done by the group. These include presenting the goal of implementing ISD measures in a manner that promotes buy-in and build trust, is essential.
Engaging communities in such a way that honors that they are experienced in ISD, not because of who they are, but rather because of oppression. This is key again when it comes back to language. Are we saying stigma, are we saying discrimination? Irrespective of what language we're using, it is important to center the source of the oppression where it belongs, on society, not on the individuals who are being oppressed. The conflation of gender identity with sexual identities problematic conceptually and prevents meaningful analysis and learning.
There is a need to shift the frame of ISD from a primary focus on the receiver, to the perpetrator and the systems. Items in a monitoring project may also reflect changes over time. For instance, individuals might start to understand what's being asked of them more, therefore endorse it more. It might also be a factor of trust as they begin to trust the assessment process and the researchers, that they will reveal more about what their true lived experiences are. Next slide, please.
I'm now going to turn to different domains of recommendations that our group specifically made based on those key considerations and the guiding questions.
The first recommendation that we are making is that there needs to be a creation of a toolkit on how to implement ISD measures, consistent of available measures, diverse approaches, so both qualitative and quantitative, and guidelines on how to adapt measures to meet the needs of communities in context. Within that toolkit, there needs to be an inclusion of a few qualitative questions that we recommend posing to stakeholders to accompany any quantitative measure, including ISD items directly linked to EHE pillars, is also something we recommend.
Ensuring that there are items linking to diagnose, treat, prevent and respond, including measures of resilience and mental health to complement ISD measures as echoed earlier by both Marcia Ellis and also by the previous presenter, Jonathon. There needs to be a focus on strength and empowerment, and not just on the adverse experiences being had. There needs to be an inclusion of measures capturing ISD at various levels, community, national, and individual. We need to include information on how ISD measures were developed. Were these measures developed with the community voice and input from the start?
What are the psychometric properties such as reliability, validity? Also to think about a rating system that would be created, again by diverse and representative group, in terms of rating the quality of these measures. Make measures sortable by various attributes, and last but not least, the measures and the toolkits need to be available to the public. Next slide, please. We also had another body of recommendations falling under, value, community, and partnerships. We need to be attentive to both the process of ISD work and the content.
Measures are measures, and they will assist us to gather information, but how we actually do the work of capturing ISD, is essential. How we arrive at choosing the measures is essential, so we need to attend to the process of doing that work when engaging with community stakeholders, and partners, and collaborators, and not just run to get to a measure. What are we trying to measure and why? How have we arrived where we're at? We need to invest time in building trust, and expand, and reach to communities unreached. We need to provide capacity building and technical assistance for stakeholders, and partners in monitoring ISD and evaluation.
We also need to create a list of key reasons and benefits of monitoring stigma, discrimination, to assist in discussions. We also need to listen to communities in terms of their priorities. What is most relevant to communities? What would be their end goal for the data? What change will the data inform? Data for the sake of data is just data. We need to be able to demonstrate and have an end goal in terms of impacting meaningful change for the communities that are consistently being marginalized. We also need to remember that communities know what intersectional stigma and discrimination is.
They are living it. This is not new to their reality. It is not referred to with such jargon necessarily. In a discussion in our workgroup, and Marcia Ellis is a member, hence why I keep highlighting her, and I also highly, highly like her. Nonetheless, Marcia had noted to us that there was a project that was actually being conducted that she was a part of. It was very intersectional in its nature, in terms of thinking about stigma and discrimination. That terminology, in and of itself, was never used. They consistently talked about a full person approach.
It is our responsibility, in doing this work, to ensure that academic jargon is not a barrier to us actually doing the work, and also that it doesn't somehow connote that there's a difference in the amount of intelligence or authority at the table. We need to lean into the individuals with lived experience, and listen, and learn with them. We also need to ask better identity questions such as gender identity and expression, in order to appropriately monitor intersectionality in large public datasets. Next slide, please. Next slide. Thank you.
Another overarching area of recommendation is around affirmation and ethics.In doing this work in implementing measures on ISD, we need to ensure that these are also centered. We need to ensure that interactions, personnel, and spaces are affirming. We need to make respondents aware of why ISD items are being asked. ISD questions can result in a range of emotional responses for participants and respondents. People can feel validated by being asked about these things. They can experience distress, numbness. Knowing that it may inform change, may also be empowering for respondents. We also need to minimize participant fatigue and burden and use a trauma-informed lens.
I do have to say, one of the greatest benefits of doing this work is coming from an angle of it as a psychologist specializing in the treatment of trauma. We also need to have a protocol in place to respond and provide resources when individuals report ISD. This ISD may occur outside and within organization, but we need to have a way of responding in place. We need to also recognize the limits of our wokeness and have a checklist to consider as we embark on implementation of ISD measures. Who are we leaving out of ISD questions? Who has been marginalized? Who is at the table leading the process and who is not? These are questions that we need to use in order to check our process, and what we're then concluding. Next slide, please. We also have recommendations in terms of specifically with NIH and departments of health and the EHE initiatives. We recommend requiring an ISD measure for all NIMH, HIV, human subjects, research studies. We're not saying recommended one specific measure, but we need to require that there is a measure that's been required across all human subjects research study because whether or not we're actually assessing it, it is having an impact in the lives of individuals.
We need to propose ISD as the fifth EHE pillar, given its impact across the cascade. We need to embed an ISD item on the standard HIV test informed but are then directly reported to the health departments. We also need to have an ISD item asked routinely in clinical and medical practice by providers, similar to the frequency and normalcy of how we ask about eating and sleeping habits and experiences with pain. Health departments can also integrate indicators to look at stigma measures. This was done by the New York State Department of Health.They took this approach by asking all their CBOs to implement a survey on stigma. Next slide, please.
Another overarching area of recommendation is monitoring beyond individuals. We need to implement measures to not only capture the recipients of acts of ISD but the perpetrators and institutions. For institutions, in general, we need to look at the C-Suite. Do they represent the community they serve? Which is something consistently being asked by one of my brothers, Ace Robinson. If your C-suite is not representative, then that needs to inform your hiring practice in order to ensure that you are best equipped to tackle ISD. It needs to be ongoing evaluation of employee students, where they are not engaging in ISD, collecting data on ISD occurring within organization, and acting locally in response to that, and integrating ISD items on patient-client satisfaction surveys.
Also, there needs to be a monitoring of ISD at the structural level, beyond individuals because that's imperative to impacting change. Next slide, please. In terms of high priority opportunities for integration, we had a few. There could be a measure of ISD that's implemented whenever there is an implementation of a CDC evidence-based HIV prevention intervention. Also, for ISD monitoring, we can utilize the framework and set up of existing data collection models that generate aggregates across sites, and of local, national, and international data.
We also need to think about systematically collecting qualitative data as well. Recognize that adding ISD items to existing data collection models will only be as useful as the current ability of those models to reach communities that are marginalized, impacted by ISD in bearing the brunt of the epidemic. Data on monitoring ISD can help to inform future funding opportunities. Next slide, please.
We also had recommendations in terms of reach policy and dissemination. We need to ensure that ISD monitoring reaches rural areas. There's a need for policy aims and congressional briefings on changes needed, based on our findings for monitoring ISD.
We need to disseminate findings from ISD widely. There were suggestions made here such as informational campaigns, partnering with the media, partnering with an annual stigma conference hosted at Howard University, Kimberlé Crenshaw's African American Policy Forum, and the AIDSVu platform, that has great data digitalization. Next slide, please. General recommendations before I wrap up. Our recommendations must be accessible in lay language, recognize that our terms can be problematic and not well received. For instance, surveillance can be a problematic terminology when working with many communities, and we need to find alternatives.
We need to have people who are fully based in community and in practice in these discussions. Panel discussions with community voices are something that were recommended post this report out. We're recommended that there are a series of Instagram live and Facebook lives that are done in partnership with community members, where we could provide a very brief overview of key considerations and recommendations being had by each of the workgroups here, and actively engaged community members, around a conversation. I could tell by a lot of the questions being asked in the Q&A, that potentially, there would be an appreciation for this.
Next slide. In terms of our next steps, we would love the support and resourcing in order to actually create a toolkit that is publicly accessible and also work on organizing and planning community panels. Before I wrap up, I want to close by mentioning one of my sheroes, Audrey Lorde. She said there's no such thing as a single-issue struggle because we do not live in single-issue lives. Next slide, please. These are acronyms from the various databases and data sets that could be used as models for integrating ISD measures. Next slide.
It's time for Q&A. I would like to say a thank you, as we head into this. My first thank you is for the community of people living with HIV, or who are consistently giving us their lived experiences, knowledge, advocacy to really do better in terms of addressing stigma and discrimination, and, of course, all the other usual folks. Thank you to the organizers and the researchers, but I wanted to shout out to the community of people living with HIV. Thank you.
Dr. Robert Remien: Thank you very much, Dr. Dale. Sannisha, thank you for, not only a comprehensive presentation, but I personally appreciate your commitment and passion that you bring to this work. Thank you.
Dr. Sannisha Dale: Thank you as well.
Dr. Robert Remien: A reminder to everyone, all of our attendees, please place your questions in the Q&A, and we'll answer them as they come in. I'll present them to Dr. Dale. Also, just to comment that since we're not always able to get to all the questions, I'm told by the organizers that they will be trying to post and keep record of all the questions that were asked, even if we don't have time for them during this session today, and have questions that can be answered to have that posted as part of the materials that get posted from this workshop. Please place your questions in for this workgroup Two, and specifically for Dr. Sannisha Dale.
Dr. Sannisha Dale: I'm seeing questions that started at 1:05 and I'm not sure it was still during that Q&A box. I see [crosstalk].
Dr. Robert Remien: Oh, I see what's happening. Here's a question from Sean Cahill. "Are you interested primarily in enacted stigma, anticipated stigma, or both? Will proposed measures distinguish between these kinds of stigma discrimination?"
Dr. Sannisha Dale: If I was answering on behalf of the workgroup, I know that all of our work cut across these, so it would be all of the above; enacted, anticipated, and both. I think it's also the need to center. You didn't mention internalize there, but to center the fact that these experiences are ones that are being perpetrated. We need to understand the context, the doer, and also the experience that people are having in their lived lives, and also what's happening beyond that in terms of their emotional, and cognitive process, and of those experiences, but it's all of the above.
Dr. Robert Remien: Here's a question from Amy Bauer. "In large national surveys," and I know we discussed this in our workgroup, so this is a good question, "One challenge we experienced when measuring stigma is that" sorry, it keeps bouncing, "Many stigma instruments are quite long. I realize you don't have a specific metric to recommend, but do you have a general guide for the minimum number of questions needed to adequately measure ISD while still taking into account participant fatigue and burden?"
Dr. Sannisha Dale: Yes. This is one of the reasons we're actually recommended the creation of a toolkit because the toolkit would not only have a list of the measures that are there, but it would be sortable in terms of the length of the measures. For a team going after a shorter measure versus a longer measure, they'd be able to sort it based on that. They would be able to sort it based on how the measure was developed, what kind of identity the measure is capturing. Is it multilevel or not? I can't specifically answer your question in terms of what amount is the least amount, but I will say there are different ways to do this work.
I, myself, has done as little as a short scale, like the everyday discrimination scale by David Williams from Harvard University, and longer metrics that are much more extensive. I think that is why we need a toolkit; to really allow people and researchers to have access to a way for making this decision for themselves.
Dr. Robert Remien: Here's a related question from Laura Bogart. I'll ask it anyway. "Great presentation, Sannisha. One of the recommendations is to implement a single ISD item, for example, on organizational forms, but how can ISD be assessed in this single item? What were some of the recommendations on how to assess ISD briefly for monitoring purposes?"
Dr. Sannisha Dale: This goes back to it as well because there are tons of metrics out there. I know, Laura, you're aware of this as well. It is possible. I have been in the position, and I have mentored and worked with individuals who are in the position where they have an opportunity to put in five items at max. Looking to see what scales are out there that have shorter items where they could capture it, but also having the conversation around the process. What identity are you trying to capture? How is this relevant to the general research question that you're asking, and then what conclusions are you hoping to arrive at?
It's the process piece that will allow individuals to make that decision in terms of what amount of items they're going to integrate, and how they land on a few when they do have overarching limitations. I definitely do not believe that it is one that we should propose. We should say that there needs to be an integration of an ISD item and measure within these studies, but we need to allow for there to be a process for people to arrive at what that exactly is.
Dr. Robert Remien: Here's a question that comes from your general terrain in Florida. "I live in Broward County, Fort Lauderdale, Florida. My research was focused on stigma in HIV positive gay men. Do you find it a challenge to recruit Men of Color or People of Color, in general, as participants?
Dr. Sannisha Dale: I got this one covered y'all.
Dr. Robert Remien: I know you would. [chuckles]
Dr. Sannisha Dale: I don't find it to be challenging. I think the issue is, how are we doing the work to engage those communities, and who is at your table. I often tell people that I moved from Harvard and came to the University of Miami a couple of years ago. The day I landed in Miami, the following day, I went to a community meeting. The reason I did that intentionally, was because I know that the success of my work, and my ability to engage with the local communities, depended upon knowing who the stakeholders are, and building relationships from the get-go.
That is one of our issues; we tend to think about communities as sources that we go to once we have a research question versus individuals that we build relationships with to invest in, and then have them a part of the research endeavor. It's about our process and our investment that's the issue with recruiting and engaging with these communities. I found that that approach has been fruitful from the research side, but it's also because it's not drive-by research. You show up, and you show up to invest and to give back to communities. Not simply just to ask the question. I think it's largely about the process.
Dr. Robert Remien: Thank you. Thank you, Sannisha. In the interest of time because we've run out of time for this workgroup, I want to thank you again, Dr. Dale. Again, it has been pretty comprehensive.
Dr. Sannisha Dale: You're welcome. Thanks, everyone.
Dr. Robert Remien: Again, to everyone to all the attendees, all of the questions that are being posted that we're not getting to, will be recorded and will be answered as best as possible when things are posted. Let me now introduce our next two speakers who are going to talk on the next workgroup. Those two speakers are Dr. Sheri Lippman and Maria Amelia Veras. Maria Amelia Veras is a professor of epidemiology at the Collective Health Department of Santa Casa Medical School in Sao Paulo, Brazil. Dr. Veras has over 25 years of experience in conducting epidemiological studies related to HIV/AIDS in Brazil, especially focused on the LGBT community.
She also is the leader of the research group called NUDHES, which stands for Health, Sexuality, and Human rights of LGBT Community was an active member of the epidemiological advisory board of the Brazilian National AIDS program. She has been involved in research and training in the US, Brazil, Angola, and Mozambique, especially the courses in epidemiological surveillance of HIV/AIDS and use of existing data in scientific writing. Her research interests include stigma, and its role in health inequalities affecting the LGBT population in Brazil, barriers to access HIV/AIDS, and other sexually transmitted diseases, prevention, and care.
Let me also take the time right now to briefly introduce Dr. Sheri Lippman, so I can turn it over to both of them. Dr. Sheri Lippman is an Associate Professor of Medicine at UCSF. She's an epidemiologist with over 15 years of experience conducting research focused on identifying social and structural factors that impact HIV prevention and treatment and developing interventions to modify contexts that place populations at risk. A primary focus of her both domestic and international research is an emphasis on stigma reduction for populations who experience extreme social marginalization, including sex workers, and transgender women, stigma reduction activities that are largely peer-based, and aim to enhance community visibility, social integration, empowerment, and social cohesion. Let me turn it over to you both, Dr. Veras and Dr. Lippman.
Dr. Maria Amelia Veras: Thank you, Robert. I'd like to start to thank Greg, Paul, and Amber for the invitation to be part of this absolutely wonderful workshop. It was also a great pleasure to work with the fabulous Group 3. Our group was Intersectional Stigma Reduction Intervention. As you said, I'll share the presentation with my dear friend Sheri Lippman. Next slide, please. The task for our group was to highlight the existing evidence of international stigma interventions, to point out what we already know, what are the gaps in the knowledge. Next, please.
As the scientific context, we acknowledge that there is a huge amount of literature on HIV stigma and a growing body of very substantial of literature around intersectionality, but very few programming addressing intersectional stigma interventions. We could identify some examples of programs that do address intersectional stigma, but we're not conceptualized as such. Some of them involve the human rights, multiple vulnerabilities in HIV stigma. It was difficult to locate them when we searched for the literature in intersectional stigma.
We decided to start from the basic, refining our tasks. For that, we redefine it, or we came to a common understanding of our definition of intersectional stigma. We identified which components make an intervention as intersectional, and we broadly assessed the evidence the existing evidence. Next slide, please. As the other groups were already mentioned, we received some guiding questions, and we felt it was important for us, as a group, before addressing our questions, to come to a common understanding of what means intersectional stigma for us. We worked on the definition, and we found that it was very, very good way to start.
It's a group definition that, from the previous presentation, we saw there are similarities very, very good, and a lot of similarities with the other groups as well. Taking the guiding questions, we decided to refine some of them. We started to examine, for instance, one of the guiding questions were, what are the key considerations when taking an intersectional approach to intersectional interventions? We've changed a little bit and refined that, and rewrote that as, what makes a stigma reduction intervention intersectional? We went through examples of intersectional stigma intervention that the group knew about it, and how these interventions were framed.
Also, we decided to outline the next steps. Next slide, please. These are the team group. We have, as team leaders, Laura and Jae Sevelius , Sheri Lippman, Anne Stangl, Kirsty, and Sophia Hass. The other members attended at least one of the calls. I would like to thank all of them. It was a great pleasure to be there, and I've learned a large amount with them.
Next one, please. This is a little bit to show how the group worked. The team leaders, they had previous meeting to prepare the agenda. We went to the whole team group, work in the group discussions. The final results of these discussions were back to the team leaders. They debrief these discussions, and edit document, and then share the document for the whole group to additional additions, or something that by chance were missing. It was a very intense work. I would like to say that our team leaders really did a wonderful job on doing that.
Next one, please. As one of the tasks, the team leaders asked the working group to provide examples of interventions from their personal work and networks including details on the intervention design, target population, ecological level, conceptual framework, study design, et cetera. It was not a systematic review. We could not do that, but a compilation from evidence from our working group and related networks. As you can see here, just one example of this spreadsheet created with this task.
Next one, please. Our takeaways, we can go to definitions, conceptualizing the evidence, examples, and next steps and opportunities.
Next slide, please. Of course, after being wonderfully anticipated by the two working groups, we have- next one, please- our definition of internet of intersectional stigma. We revised multiple source documents to propose our definition. Basically, we center in the stigmatizing forces and not looking at the identities. We stress that examining the social inequities and the interlocking systems of power, privilege, and oppressions that create and reinforce intersectional stigma was the core, or what we understood as a definition of intersectional stigma.
In working on this definition, we also thought a lot about the need to look carefully to the measures and the outcome of the interventions. I am really happy to follow Dr. Sanisha Dale with the wonderful presentation stress in some of these.
Next one, please. The next intersectional stigma reductions seeks to address the systems of privilege and oppression. But in our search, we observed that most of the studies are intervening on the manifestations more than on the system itself. We understand that is a big challenge that we need to address. Maybe in the work that is coming forward, we can see that more addressed or involved.
Next one, please. Finally, from my part here, we defined what were the core components that would make an intervention intersectional? We thought that we need to address the conceptual system of power, privilege, and oppression. We must seek change or mitigate the impact of those systems. We should include community leadership in meaningful engagement of those communities, and also to address the access of the interlocking forces of stigma and discrimination.
We understand that systems like racism, sexism, transphobia, et cetera, are social processes, and they are mutually reinforcing or interlocking. We should address them as an axe, rather than trying to separate or single out these forces.
With that, I pass to my colleagues, Sheri Lippman, that you go through the presentation of the group. Thank you.
Dr. Sheri Lippman: Hi, thank you, Amelia. Our group really felt strongly that in conceptualizing the evidence, we couldn't adhere to an RCT-type evidence review for this topic. Instead, we sought to find a broad base of examples of interventions that met our definition, so whether or not they were initially conceived as intersectional interventions.
As noted, we asked the working group members to contribute examples and to include programmatic efforts and interventions that included a range of outcomes related to HIV and wellbeing among those living with a risk of HIV, but not only HIV clinical outcomes.
Next slide. Thank you. We then categorized our interventions by ecological levels as depicted in this figure to summarize the common approaches and outcomes at each level of the ecological model. We'll go through examples of each in the coming slides, so I won't spend a lot of time here. We did note that many of the interventions, including the recently funded PRISM interventions include activities entrusting at least two or three of these levels in different ways.
We also noted that there are fewer policy and structural interventions in the HIV prevention and care literature, but a lot of policy and advocacy work going on to mitigate or rectify health inequities and social determinants like stigma that are critical to HIV, but they wouldn't be found in a PubMed search.
Next slide. We've included a few summary points and an example of interventions at each of the ecological levels that were shared with the group. At the individual level, interventions usually focused on working with an individual to promote stigma coping skills. They have traditionally been focused on a single or dual identity group.
In this example, Jackson, Pachankis and colleagues modified an existing 10-session one-on-one minority stress-focused cognitive behavioral therapy intervention, addressing cooccurring health risks among gay and bisexual men of color, called ESTEEM. With that, they developed an intersectionality-informed adaptation called ESTEEM-Connect.
Their study showed improvements in mental health and sexual health, as well as stigma coping as demonstrated by decreases in perceived sexual minority stress, racial minority stress, and intersectional stress.
Next slide. Thanks. The interpersonal interventions focused largely on building resilience to stigma and addressing barriers to healthy behaviors through peer-based dyadic work. Some interventions also used communication skill-building to improve supports in partnerships and with family.
The Trans-Amigos intervention, that was conducted by Dr. Veras, Dr. Sevelius, and myself, utilized multiple conceptual models including gender affirmation, intersectionality, and social cognitive theory to inform a peer navigation intervention to improve retention in HIV care.
This image comes from a dance group that formed organically during the course of the project. It is, in and of itself, its own outcome. Today, we've documented higher levels of self-reported retention, and the intervention participants and other clinical outcomes are forthcoming.
Next slide. In seeking an example of an organizational-level intervention, we turned to a current prison grant funded by NINR to MPIs Nelson and Nyblade . This is an example of a multilevel intervention that includes an organizational component. This study, which is taking place in Ghana, combines three evidence-based interventions that were tested at a single level, and then combined.
The organizational health facility level is intervention focuses on provider training. The interpersonal one focuses on MSM social networks and uses EBIs. The individual-level intervention is also based on an EBI, the three MB intervention.
Like this intervention, we noted that most of the organizational level interventions included facility level or organizational level training. That would be the health providers or public employees like police, and often included activities to assess and revise organizational anti-discrimination policies. You'll need to stay tuned for outcomes on this one.
Next slide. The community level interventions we received often focused on mobilization and community empowerment and fostering group identity to build cohesive networks to support healthy behaviors, as well as resilience to stigma. This can be similar to the interpersonal level activities, but in this case, it's offered in a group format and so it focuses on promoting coping skills anchored in a larger group.
The Sheroes intervention, this example, which was developed by Dr. Sevelius, is grounded in the theory of gender affirmation, which incorporates social learning theory, the theory of gender and power, and takes an intersectional lens.
For this series of group sessions, they took a status neutral approach. That was really important to the community partners in order to reduce any potential HIV stigma associated with participating. Outcomes here included reductions in unprotected anal sex and number of sex partners.
Next slide. Our structural and policy level intervention examples included activities that were focused on advocacy and changing discriminatory laws and policies, whether they were explicitly or implicitly discriminatory. Some include placing champions and community members in public office. While they might not be planned around HIV, they can improve access to HIV care and wellbeing.
The Mississippi Center for Justice, which is a nonprofit law group committed to racial and economic justice, has a current stigma reduction intervention to educate policymakers in community regarding stigma and its impact. They have a training component for healthcare professionals, and they're working to empower Black MSM to understand and act on their legal rights.
An important point here is that to create structural change and to truly address intersectional stigma and the structures and power and privilege that are feeding discrimination and inequity, we really need partnerships with organizations outside of the health sector. We can't remain siloed in HIV. The MSCJ is really a great example of a law and advocacy group that we can work with. It brings home the need for an intersectorial response and bringing that to the forefront of the work we do.
Next slide. A few summary thoughts on next steps and opportunities. Our group felt like we need to challenge our own thinking and others' thinking if we're going to truly get a handle on intersectionality and its impact on stigma and discrimination and the health inequities that ensue. That includes broadening the research paradigm box that we're in. This broadening starts with positive framing, which has come up in many of the other presentations, and a recognition that there's resilience and resistance where multiple and intersecting stigmatizing forces are at play.
We need to focus on leveraging community strengths to address intersectional stigma and need to move away from centering the problem of stigma on specific identities or groups of identities, and instead really focus on challenging and mitigating those social forces and processes that are impacting communities and individuals.
We also noted that the use of language can be inaccessible, and it can create challenges in forming partnerships. One of our working group members was saying that nobody calls their own experience intersectional necessarily, but they certainly are experiencing intersectional racism, and transphobia and all these other experiences. We just need to broaden our language. I think that also came up in some of the other working groups.
Next slide. Broadening our scope also means broadening our research tools and our partnerships. In terms of measurement, we typically measure how people internalize these systems of power and privilege, but we rarely measure the actual forces of power and privilege. We would have a hard time assessing or quantifying change at the root of the problem if we had interventions that sought to address those power imbalances. Broadening our measurement also includes measuring the intermediate processes and outcomes to healthier living like improved solidarity and community engagement.
We also focused on the qualitative data. It plays a huge role here, and it's particularly strong in looking at what we didn't know might happen.
Peer facilitators and educators change. Participants in the research we do change in surprising ways. Groups form, like the dance group among trans women from our project in Brazil who now go by the name [unintelligible] and they meet frequently. We need to utilize qualitative data, which really offers an avenue to assess these outcomes. We could use more research looking at intervening on driving economic factors. That, again, brings home the need for cross-sectoral responses that was noted earlier.
Next slide. Relatedly, our evidence base can include findings from broader implementation and programming outside of proof of concept studies. We're looking to change intersecting social forces, and therefore we need to engage with government and community and the policies and structures that create those forces from the get-go if we really want sustainable change. This includes a bigger emphasis on community engagement and designs like CBPR which some of the other groups have mentioned as well. Because intersectionality comes out of an activist tradition, we probably need to broaden our research to a more activist stance if we're going to make any headway here.
Next slide. In conclusion, our group wanted to encourage more thinking outside of the standard research frame to address intersectional stigma and its impact on populations. That might mean some changes for funders like the NIH and other government agencies and private foundations, including funding approaches to address stigma and inequity that's not based on a single disease outcome, but focuses on changing environments that can impact the whole person's health.
We also propose potential funding for additional follow-up time to document ongoing impacts and changes, and that could be really fruitful. The group thought that we could work towards representation of intersectional stigma experts on research networks, like the HPTN, or even funds new cross-agency networks and initiatives focused, specifically on this topic.
Next slide. We just wanted to throw out a heartfelt thanks to the working group, to OAR, and NIMH for supporting this workshop, to all of you for sticking with us on Zoom today. It would be really nice to do this in-person, and to the Black feminist theorist and scholars who really pioneered this work and inspire us to work [inaudible 02:16:42]. Thank you.
Dr. Monica Gandhi: Thank you so much. That was a great presentation. Sheri, it's nice to see you because we're at the same institution, but we never see each other since March.
I am actually trying to just look at the questions that are distinguishing our ones. I haven't yet gotten questions specifically for you. Here we do have one. Thank you, Sarah, from our institution.
In the review of interventions at different socioecological levels, the question was that Dr. Roberts didn't see any that aim to address stigmatizing practices within the communities or social networks of those who are affected, for example, families, partners, neighbors. My question is, and her question is, do you see this as a gap? Do you have any suggested approaches to work at that level? This would be for either panelist?
Dr. Sheri Lippman: I think our working group, one of the things we didn't have time for is a systematic review. The fact that we didn't highlight that doesn't mean that they're not out there. It just means none of the working group members provided examples or exactly about [that kind of 02:18:04] work. It might just be an omission because, of all of the examples that we gathered, the majority really focused on [inaudible 02:18:14]. Amelia, if you have anything to add.
Dr. Maria Amelia Veras: Thank you for the question, Sarah. I following with Sheri saying that I think that we are now implementing study that we'll be able maybe to capture some of those issues. We don't have an answer yet, but I hope in the next few years we'll have.
Dr. Monica Ghandi: Another question that comes from Doug [Crochour 02:18:43]. This is, do you have any thoughts on the best ways to engage and motivate stigmatizers in this world, for example, health care providers and their stigmatization and the systems in which they operate, where some of this can be systemic?
Dr. Sheri Lippman: Amelia, do you want to take that?
Dr. Maria Amelia Veras: That's a very, very challenging questions. I think that in our group, one of the things we've discussed a lot is the need to address the structure, the environment, and how it barely found at least examples in the literature of successful interventions doing that.
I think that that one experience that we could share is to build the research and to build all the intervention, not only with community members, but the institutional members or clinic or healthcare providers that are involved in this study. That way, we can, I'd say at least for the ones involved in the design of this study, be more sensitive across the issues that are stigmatizing that make that practice hard and be more harmful to people then help them.
I think it's really not the answer to your question but saying that something from our experience that I suggest we could do.
Dr. Monica Gandhi: Thank you. This has come up now multiple times for the working groups; use of language is important. This is a question from Katrina [Kupisec 02:20:36]. Are there terms or language that you suggest for describing intersectionality?
I know that this has come up before, but we'd like to hear your take on it, that would resonate more with communities.
Dr. Sheri Lippman: I think that depends on the community you're working with because I think in each context, you're going to have different isms. Whereas [inaudible 02:21:05] the African communities I work in, racism isn't as big as [inaudible 02:21:11] tribalism is [inaudible 02:21:12].
I think, really working with your community on what are the structures that are affecting your experience? Constructing a language, the other, I think would be really productive. I think that one of the problematic [that our group 02:21:34] noted with intersectionality is academic jargon. We didn't really necessarily have [inaudible 02:21:41] words to make up for it. It really is something that needs to be built.
Dr. Monica Gandhi: Another question. This is a great question because it's around measurement, maybe our over-focus on measurement. This is from Donna Smith.
Since we know intersectionality exists and is multifaceted, why the extensive focus on measurement? Is this driven by funding mechanisms- I think that's a fair question- that requires outcomes that can be measured? If we're focusing on involving community-based organizations in the response and community members, can we think of small localized interventions that address intersectional stigma and how they might be evaluated qualitatively or for mixed methods instead of our quantitative measurement?
Dr. Sheri Lippman: I do think that if you can't measure the thing that you're trying to change, it's pretty hard to say that you've impacted it. I do think that if you're going to make policy change, and you're going to obtain research funding, often having a measure is an important part of that neck.
I agree, in our work we talked a lot about qualitative data and the importance of following experiences and mapping out outcomes that might not be quantitatively measured, but that are very important. Like a group organizing. We work with trans women, and they organized their own group. That is an important outcome. It changed their own social structure, and they created a network just for each other.
We don't have a quantitative measure for that. The qualitative observation would have captured that work. Those measures need to be utilized. They also need to be respected by the research community and is something that I think we're still working towards.
Dr. Monica Gandhi: One last question and one comment because we have to move on. Thank you so much for these presentations.
The comment is actually around Doug's question, which is that formally training clinical providers to be aware of the biases could impact change. I think that's a great comment.
The second is could you please speak about how my research might go about addressing stigma in the context of complex religious communities and institutions that can impact stigmatization and destigmatization so particularly in certain religious communities?
Dr. Sheri Lippman: I don't know if Amelia hasn't- if you want to take that.
Dr. Maria Amelia Veras: In our experience here, we are not talking, or we are not working with the religious communities. We are working in a very difficult context in terms of the political and social environment in Brazil right now.
If we talk about the political, the leadership that we have, the message that are placed on, we have minister of women and family, for instance saying, what is wrong or right in terms of dressing and colors are. If you can imagine for a person that is a trans person, it's being not recognized by institutionally formally, although we have laws that protect them, and the laws are human rights based. They were created in another time. They are not being forced. It's very difficult.
I think that as previous speakers mentioned, this situation also creates strength. I think it creates solidarity. We can relate to solidarity communities in terms of working with these issues and make us, all of us, stronger. I think that's a good way to survive difficult times as the ones we live right now in our context.
Dr. Monica Gandhi: Thank you so much, Dr. Veras and Dr. Lippman for your wonderful presentations of Working group three. Now we're going to move on to Working group four. The title of this is really to integrate and tailor intersectional interventions to advance [unintelligible] epidemic goals and improve HIV prevention and treatment outcomes.
As part of this, I'm going to actually introduce both speakers now. I want to introduce Dr. Victoria Frye, who's an associate medical professor in the department of community health and social medicine at the CUNY school of medicine, where she heads the laboratory of urban community health.
Her work assesses how systems of social stratification intersect to produce health outcomes among marginalized social groups, including gay, bisexual, and other cisgender men who have sex with men, cisgender and transgender women, and people of color.
Following is David Matthews. We are thrilled to have. He is the chair of Brooklyn's Ending the HIV Epidemic Steering Committee, and as part of the EHE initiatives, which is what this working group is focused on which are administered by the New York State Department of Health and the AIDS Institute. Thank you so much for working group number four.
Dr. Victoria Frye: Thank you. Next slide please.
Mr. David Matthews: Good afternoon, everyone. Thank you for hanging in there for Workgroup number four. I'd like to thank the team leads who were part of workgroup number four, LaRon Nelson, Janet Turan, Lisa Hightow-Wiedman, Victoria Frye, David Matthews- myself, SkylerJackson, Anna Leddy, and Donte Boyd.
Next slide, please. These are the other members who attended at least one call. Great thanks to everyone who was a part of this particular process.
Next slide, please. The charge for Working group number four was how do we integrate and tailor intersectional interventions to advance the ending the HIV epidemic and improve HIV prevention and treatment outcomes.
Dr. Victoria Frye: We addressed this charge, first, by thinking about the scientific context. If we are wanting to integrate and tailor intersectional interventions to address health outcomes, what is the existing evidence base? Luckily, some of the other working groups have covered this very nicely, but we do want to note a few things.
First, the explanatory or basic research around intersectional stigma experiences and how those influence uptake of prevention and treatment is still developing. Second, there are very few intersectional stigma interventions that have been demonstrated to be efficacious in controlled settings that are published in the literature and therefore known to researchers.
Third, it's very challenging to demonstrate efficacy of interventions, either at higher levels or at multi-levels. This has been discussed extensively. Fourth, the scope and nature of the programmatic work to reduce intersectional stigma and improve related health outcomes is actually unknown. This has also been alluded to by other groups. We'll be returning to this with a recommendation level later. Then finally, whether there really is an empirically demonstrable added benefit of hybrid or multilevel interventions is also something that is currently unknown and being demonstrated.
Next slide. We're going to move past the definitions because these have been covered pretty well but these are the definitions that we used in our working group.
Next slide. Like the other groups, we approached our work by examining several guiding questions. These are just four of the ones that we address, but we also started with what makes an intervention intersectional. We then asked how does intersectional stigma itself impact uptake, delivery and performance of existing HIV interventions? Third, we asked in the context of implementation, how can we support individual strengths to cope with or fight stigma, while also addressing structural stigma? Finally, we asked what can be done to increase or enhance the impact of interventions, aiming to reduce HIV stigma and other intersecting stigmas in implementation settings?
Next slide. In discussing these questions, we drew some broad conclusions about what is intersectional stigma intervention. This really centered on the complexity of intersectional stigma. Like the others, we concluded that it could address multiple stigmatized identities or multiple systems of oppression. It could address stigma and discrimination on multiple levels, meaning the individual interpersonal community and structural, or it can be multiple stigma mechanisms.
Next slide, please. We concluded that an optimal intersectional stigma reduction intervention would seek to address the systems a privilege and oppression that fuel intersectional stigma. This is something that has been stated several times today, and we concluded that as well.
We concluded that it could intervene on the system itself, or manifestations at one or more levels as well as the practices, and that it would work across the socio-ecological spectrum. Again, this has been reiterated.
Next slide, please. In summary, this guiding question really brought us to the conclusion that we need to acknowledge the complexity of intersecting identities and systems. We have to acknowledge the context. We need to be operating at multiple levels of the social ecology. Like the other groups, we have to really incorporate strengths, and build on the solidarity that emerges when people with shared identities and shared experiences come together.
We concluded that intersectional stigma intervention should do all of those things, but we should also make sure that we don't ask people to hang parts of themselves up at the door to get the services they need as we are tailoring these interventions to advance the goals of Ending the HIV Epidemic. We have to treat and address the whole person. That includes all identities and needs, so that there is not compartmentalization. We need to focus on facilitating change in specific settings and contexts and at multiple levels as part of our tailoring. Next slide.
Mr. David Matthews: A quick precursor, as I begin to cover our guiding questions, and this is that I've spent two decades actually in the act of professionally implementing a lot of these programs and these interventions. A lot of my perspective is actually going to be real-life stuff that comes up when these intersectional issues begin to come into play.
For guiding question number two, how does intersectional stigma itself impact the uptake, delivery, and performance of HIV interventions, some of the key challenges that came up with a structure, there was structure and system is problematic and actively communicates.
Can we look at what's wrong with the system and structures, rather than looking at what's wrong with the people that don't get what it is that they need? Structures and systems inform environments that actively communicate belonging and alienation. What ends up coming up is that we use a language in the delivery of work, that if a participant of our program isn't actively benefiting from it, we say that it's the client that's not ready. We speak to the readiness of the client, as opposed to whether or not the programming itself is set up properly to support the client where they actually are.
Next slide, please. Structures and systems that encourage one size or siloed approaches, the environments ignore an increase existing intersectional stigma. A focal interest only on HIV status can be dehumanizing and can undermine motivation for service engagement.
What this has brought up for me is that there was a period of time where a lot of our organizations that provided HIV services had the term or the name HIV or AIDS in the title of the organization. It began to become clear that the participants of the program or individuals in need were not going to the program to get their needs fulfilled because they felt stigmatized by going through the doors of an organization that read HIV or AIDS, and so folks stop going.
Folks began to acronym their name or change their names and remove HIV or remove AIDS in order to create less stigma around the service delivery that happened. The problem, though, is that the programs are still set up to provide HIV-focused delivered services which continue to dehumanize the individuals or make them feel stigmatized.
Next slide, please. Other key challenges: an ahistorical lens facilitates intersectional stigma. Implementing organizations have histories with individuals and communities. Memories of these histories may prime detection of intersectional stigma, and the workers of the organizations have to be very, very aware of this historical memory, the historical presentation, and how it continues in plaque the clients. That speaks to the last example that I stated about organizations having HIV or AIDS in the name of the title.
Stop planting good seeds in toxic soil. Environments matter. HIV interventions can't be expected to optimally produce intended client level outcomes if no attention is given to addressing the environments in which they are implemented.
Next slide, please. Key reminders, responses to unwelcoming and/or problematic environments, clients may feel the need to downplay or compartmentalize their intersecting identities, to minimize risks of experiencing stigma, and optimize service experiences.
You may have an individual who identifies as a trans man, who is a man, because that's how he identifies, and he wants to go to a program that provides services to cis men, men who were born male at birth, but he's not able to participate because he was born female. He doesn't get access to the services that he needs. What he does is he downplays that he's trans-identified and just goes in as a cis-identified male so he can get access to the services. The issue there is that the issues that may arise due to his transgender identification don't get approached, so he doesn't get support in those particular areas.
Client preoccupation with an anticipation of stigma can distract from prevention messages or impair comprehension of information and skills offered.
Then intersectional stigma in organizations. Next slide, please. Intersectional stigma in organizations is traumatizing for clients. Some interventions designed to address stigma and HIV can sometimes end up "othering" and reinforcing the stigma by not explicitly acknowledging intersectional stigma and discrimination racism in particular. Next slide. Next slide, please.
Dr. Victoria Frye: I think we actually skipped a slide. Go back one. Thanks.
Mr. David Matthews: Key reminders, language, and service delivery matters and can be stigmatizing. Of course, this is something that has come up a lot. We utilize acronyms to describe individuals which categorizes them young Black MSM. They don't identify as that, so why should we be identifying them as that. Calling their behaviors high risk can further stigmatize individuals. Next slide, please.
Dr. Victoria Frye: With guiding question number three, we asked ourselves, how can we support individual strengths to resist stigma, as well as addressing structural stigma. This really reflects what we think is an oversimplification of it's one or the other.
We concluded that dichotomizing stigma interventions is not helpful. Structural interventions almost always involve some individual-level work, and individual-level interventions often have an impact on the structure, although this is sometimes unmeasured. We do need to recognize the critical importance of both individual-level interventions and structural level interventions, and how they interact.
Individual-level interventions can increase empowerment, which influences and increases engagement in advocacy, which can then lead to policy change. Fostering community solidarity can lead to social change. We need to connect our work to the social movements that are going on all around us.
We cautioned ourselves and reminded ourselves to remember the burning building metaphor, which is that we need to save people who are within a burning building. I would also say, though, sometimes the burning building can be a source of resilience for people.
Next slide, please. Thanks. Other key challenges that emerged from us grappling with this question is that stigma, as an outcome, has been seemingly demoted by the NIH as a high priority outcome, and that the biomedical and behavioral outcomes are privileged and centered.
What happens is that some extremely valuable research projects would fall into what we call a medium priority for impact. I think that this is very important and has been stated several times before, the experience of stigma as an independent outcome and needs to be centered.
We also need to note that if we want to support individual strengths, we also have to recognize that the policies and contexts where interventions are being embedded are often very problematic, whether it's sex education, or the HIV criminalization laws that a context may have, and that when an intervention is embedded there, it can potentially become part of a stigmatizing system, so to be aware of that and really attend to it.
Similarly, the broader problems or so-called problems in service delivery are actually problems in our social contract. We are implementing interventions that are attempting to address individual strengths and build them up, but the broader social contract is being broken. We are not supporting people in having access to adequate food and housing. We think of those as barriers to engagement, but in fact, they are problems and failures of the service delivery system and our society, more broadly.
Next slide, please. We did also identify some key opportunities in discussing this question. We believe that we do need to expand what we measure. Some seemingly individual-level interventions, and this has been noted before, are doing structural work. For example, peer navigator programs extend beyond HIV risk into poverty alleviation, legal rights, et cetera. We really need to measure those and document them and elevate them within our reporting.
We also thought that a key opportunity was adopting a human rights framing. We often think of folks as clients or patients or participants, but very rarely as rights holders. A new approach could be what would a rights-based approach to HIV prevention look like.
This has been said numerous times. We can't emphasize it enough. We need to learn from non-researcher experts. There's untapped overlooked, and undervalued expertise among individuals working in communities, and then finally focusing on the whole person.
Next slide, please. Opportunities that we identified in our discussion of this guiding question really focused on using strength-based and asset-focused holistic approaches in terms of, again, integrating and tailoring these interventions, or developing them since there are so few.
Approaches that focus only on risk reductions can be stigmatizing, as we've discussed. It also absolves the system of responsibility. This has been discussed at length already today. We need to foster partnerships with asset-focused programs and organizations that don’t center problems, but rather celebrate strengths and community and culture, as the point was made earlier today too.
Whole client- and community-centered, and multi-sectoral approaches are major paradigm shifts that we need to make to move the field forward, to have impact at the structural level. Next slide, please.
Dr. David Matthews: The final guiding question is what can be done to enhance the impact of interventions aiming to reduce intersectional stigma. Key questions that came up with this is that the scope and nature of existing potentially intersectional stigma reduction interventions being implemented or not well understood.
What stigma interventions are currently being funded for implementation by the CDC through the Department of Health, by PEPFAR, by USAID in LMIC settings?
Who are they impacting? What are the levels that they're working at? What stigmas are they actually addressing?
Finally, and importantly, do existing efficacious interventions adopt anti-intersectional, stigma approaches, but are not being labeled and disseminated as such. One of my favorite interventions is Many Men, Many Voices, 3MV, that was brought up earlier by Sheri. It's an intervention that I really love, but not necessarily- even though it's targeting particular populations, not necessarily considered anti-intersectional stigma. There needs to be evaluation around that with that particular intervention.
Next slide, please. Key challenges connected to guiding question number four; perspectives, and experiences of service providers are not leveraged to improve intervention, evaluation, and/or implementation.
This is one of the things that I struggled the most with the implementation of the programs and the interventions. While there was some level of evaluation built into it towards the end of the program, it definitely wasn't significant enough. Any outcomes didn't work, necessarily reported back to us to help us build and continue to grow the programs as they existed.
A lack of accessible and open clearinghouse or forum; this was discussed earlier for sharing promising programs, best practices, or evidence-informed programming.
Next slide, please. Further challenges. Funding our priorities and metrics influences our ability to address intersectional stigma. Siloed and incremental service provision funding prevents collaboration and discourages recognition of intersectional client experiences.
Again, this can't continue to be said enough. It's been said multiple times. The siloing has a tendency to contribute to the intersectionality of stigmas that negatively impact the implementation of the program and the way the clients receive the knowledge.
Next slide. Key reminders: community ownership, engagement, and connectedness facilitates successful stigma reduction intervention implementations. Again, this was spoken to very well, at least by Marcia and Sannisha earlier communities need to be at the center of the work.
We saw this when I used to run a drop-in center in central Brooklyn, working on the change project with Victoria Frye and Mark Page and GMAD (Gay Men of African Descent). It was very, very successful in the way we engaged community in ways that weren't just working with community advisory boards. We were out in the street, visiting barbershops, putting up bus shelter campaigns, and it proved to be very successful in ways I had not seen before.
Next slide, please. Apply best practices for working holistically with communities. Tailor interventions with communities. Prioritize what's best for each. Amplify community voices in design, adaptation and implementation. Working closely with community partners increases odds of feasibility, sustainability, and buy-in, and lessens burdens on partners, and does not make the process less rigorous.
Next slide, please. Key opportunities, identify and create a living and open compendium/database of research and community efforts to address intersectional stigma. Identify core characteristics of interventions that make them successful but remain flexible to context.
We were held tightly to delivering diffuse evidence-based interventions that were created in jurisdictions that were not our own, and to a different population. We had to struggle and hustle to adapt the intervention, to meet the needs of the client base we were working with. Next slide, please.
Dr. Victoria Frye: We are getting the hook here. It's time for Q&A, but we do just want to conclude very briefly by saying that we think that new ways of thinking are needed. We need big and bold approaches to embrace the complexity of intersectional stigma. Research that tinkers around the edges is not going to have a serious and significant impact. We urge us to consider a human rights-based approach to really think about our place in the context of the larger social movements for justice around us and connect to those. We need new ways of evaluating our interventions. That was discussed, I think, very nicely before.
Next slide, please. Particularly, we also just would very quickly say we do need to catalog what is going on in the community among service providers. We don't really think we know that yet. We do need to broaden the scope of high priority outcomes to include stigma reduction. The implementation science research and more complex methods for evaluating our work is needed, including the multilevel and hybrid interventions.
Next slide. This is the last one. We need to recognize the stress and trauma that results from intersectional stigma, and really begin to build on the strength-based approaches, address barriers in the research workforce to true collaborative work. This has been discussed before. Again, connect to the social systems of oppression that operate in all the environments, including funding, and finally elevate stigma reduction as a standalone and high priority outcome.
Our last slide are thank yous. Thank you to everybody who supported this.
Mr. David Matthews: Thank you.
Dr. Monica Gandhi: Thank you so much, Victoria and David, those were great. A couple of questions coming in. We're going to just go for a couple of minutes here with questions to keep us a little bit on time.
This is a question from a viewer who works in industry. The question is that an industry focusing on recruitment and retention of clinical trials dealing with HIV/AIDS, what are the most important takeaways in your view that should be relayed to the team to better address the needs of people living with HIV, and address stigma in the clinical trial setting conducted by industry? As we know, clinical trials have not often reflected the diversity of participants living with HIV.
Dr. Victoria Frye: Our working group is really focusing on how to tailor and adapt existing intersectional stigma interventions. I think this is a broad question that reflects how do you-- I guess the question is, how do you recruit. I think our response would be well, how do you connect to communities that could potentially benefit from being involved in your research.
I think Sanisha really addressed this question pretty well before, which is, you have to engage authentically with communities. You have to be involved in communities. You have to be a part of a community yourself to know what it's like to be part of community movements. I'm going to ask Dave to jump in here, because this is one of his hgreat strengths as well.
Mr. David Matthews: Certainly, Victoria is definitely going in the right direction with this. The reason why that we could run a young LGBTQ program in central Brooklyn, in Crown Heights, is because we did active work to continue to engage community. We did that before the CHANGE program, we became associated with the CHANGE project.
What this really is about is establishing trusting and consistent relationships with the community. Also, it doesn't always have to come down to the persons who are trying to engage community looking like they do. There has to be a trust factor, but that trust factor is definitely built up over time. There's a genuine interest in the livelihoods of the individuals. Ask people questions about how they're living their lives, and they'll tell you truthfully. This is a great way to open doors.
Individuals who have a proven track record of doing that, those are the individuals who you want on the team. Individuals who are not afraid to do that as well are the individuals you want to have on your team.
Dr. Monica Gandhi: There are a couple of questions about funding opportunities that we'll defer a little bit, even though one is very fair to say, funding opportunities for community-based organizations and researchers embedded in the CBO's themselves. I think it's hard to compete within those in an academic setting. I think that's a very important thing for us to think about as we move forward with this work. I'm going to actually ask a specific question that's posed around the question of preaching to the choir.
The question is that we're bringing up really important issues and everyone here is working within these issues. How do we get about these messages about the focus on structural levels, community organizations, to NIH reviewers and others? It's the NIH reviewers and NIH policies that make or break whether this work is done. I recognize this as being organized by the NIH. It is important to say, how do you think we message this to reviewers how important this is?
Dr. Victoria Frye: That's a great question. We have been talking about that behind the scenes in terms of the written report that will also emerge from this, where I think we are coalescing around a desire to offer much more specific recommendations.
Certainly, specific RFAs that would call for and require co-equal funding and leadership of NIH-funded studies with community-based organization leadership, as well as a researcher scientific leadership would be one way. Training study section review teams on recognizing competence, that being competent at engaging and reflecting and being involved in, and representing communities is a competence, and that expertise is required. I think we skipped over some of that. It is necessary to the project for the project to succeed.
These are very specific things that can be written in to RFAs and can be presented to study sections for them when they are reviewing grants.
There was the idea of actually trial networks. If that were to develop, I would recommend that they be co-organized by community organizations and academics; that it cannot revert to an academic-led process with some of the community components added on and having less status and power. I'd be interested to hear, and I know, LaRon and Janet might also want to chime in.
Dr. Monica Gandhi: I think these are great. I'm so sorry we have to wrap it up, because we have to get to our closing comments by Dr. Goodenow but thank you so much. You're both great, Victoria and David.
Mr. David Matthews: Thank you.
Dr. Monica Gandhi: Thank you.
Dr. Victoria Frye: Thank you.
Dr. Dianne Rausch: We're charged with wrapping up. This s has been an incredible conference, and so much that we've heard. I tried to shorten; I can't possibly summarize everything in two minutes. I think I will cut this down to a couple of key themes from the day.
First of all, I think intersectional stigma is a complex concept, as we have heard, but we have a clear understanding of the main tensions and considerations, and a consensus appears to be emerging from the workgroups. We look forward to reading more details in the completed report.
The importance of moving beyond individual models of stigma, including intersectional stigma toward a multi-level model that includes systemic measurements of approaches to structural factors and forces is really important. The need to expand our focus to include attention to resilience, resistance, empowerment, in addition to intersectional stigma and discrimination is also really important.
Another clear theme from today; committees are essential partners in developing an intersectional intervention such as the Mississippi Center for Justice, which was presented as an example, and also, the clear importance of training, capacity building, and leadership, which are necessary components in intersectional stigma and discrimination researchers and services.
Going forward, helpful resources could include a toolkit with a compendium of measures and interventions, as well as methods to implement, evaluate, and monitor. I look forward to the written report and all the information that comes out down the road. I'll now turn it over to Dr. Goodenow, for the final word.
Dr. Maureen M. Goodenow: Thank you. Thank you, Dianne. I would like to thank all of the participants and reporters and moderators today. This was a fantastic summary of an enormous amount of work. I think that from a technical point of view, this is a first; not so much that this workshop, or this whole enterprise since July has been virtual, but the complexity of it, the large number of participants, and the ease with which this worked is just amazing. Kudos to everyone involved. I think it's really set a new standard for how we can manage communication going forward.
I also, as Dianne reduced her remarks, I'm just going to make a couple of other quick comments that are not in my written remarks. I'm very, very happy to hear the focus that everyone has put on thinking outside the box and getting really creative.
I'm very, very keen in continuing these conversations with the NIH and with Dianne and NIMH about what things really would look like, and what can we do, given the parameters that we work in. I do think this is a fantastic opportunity to, if you will, seize the moment. Let's get creative and see what we can really do to jump ahead, maybe, several steps in the process.
This is, I think, the beginning. Clearly, there's going to be a lot of follow up, a lot of work to do looking at all of these fantastic reports, getting information out to all of the stakeholders, and developing very specific next steps, not only for the near future, but steps that can really take us out five years or more in our thinking and in our activities. Thank you very much. Enjoy the weekend and stay safe.