- A Q&A with Karine Dube
- Introduction and Background:
- Can you tell us a bit about your background and what inspired you to pursue a career in sociobehavioral sciences?
My background is in international development and global public health, and I consider myself an interdisciplinary and team scientist. I started my career in the field of HIV prevention research, where there was already a rich tradition of socio-behavioral sciences, ethics, and community engagement. I worked in 9 African countries, but particularly in Mozambique where I spent 5.5 years building clinical research capacity for HIV prevention trials (2008 – 2013). When I started working in HIV cure-related research in 2013, most of the research was focused on basic sciences. At the time, there was a dearth of socio-behavioral sciences and ethics research. As an increasing number of HIV cure clinical trials are implemented, particularly in resource-limited settings where the burden of HIV is highest, we will need to bridge biomedical research with socio-behavioral sciences, ethics, patient/community engagement, public health and research capacity building. Focusing on the socio-behavioral aspects of HIV cure research seemed like the perfect fit because I could bridge all my research interests and passions. This also allowed me to interact with the HIV community.
- What are some of the key milestones or achievements in your career that you’re particularly proud of?
There is not one milestone or achievement that I am particularly proud of. The more I progress in my career, the more I realize that science is iterative and made of incremental building blocks. I am happy to be able to focus most of my time on research activities. I feel like I have come full circle by working in Sub-Saharan Africa and being able to bridge HIV cure research and HIV prevention (in the form of partner protections) again.
- How do you see your role as a scientist in relation to the broader community or society?
I see my role as a translational bridge between what might work in the lab and the interventions that may eventually help improve the quality of life for people with HIV. Socio-behavioral sciences and ethics research can help us ensure that biomedical sciences remain ethical, acceptable and feasible for communities of interest. I am also an advocate for ensuring HIV cure clinical research remains focused on the needs of patients/participants. We need to center people with HIV in our clinical trials, particularly those that require the interruption of HIV treatment.
- Current Work and Research:
- Could you describe your current research interests and projects?
Most of my projects revolve around the socio-behavioral aspects of HIV cure research. For example, I am currently involved in 6 – 7 ACTG HIV cure clinical trials, where I serve as socio-behavioral scientist, with Dr. John Sauceda (UCSF). We investigate the psychosocial experiences of people with HIV who take part in intensive HIV cure trials with analytical treatment interruptions. I am also very involved with the UCSD Last Gift cohort (https://lastgift.ucsd.edu/) which enrolls extremely altruistic people with HIV in HIV cure research. I support socio-behavioral research with the Females Rising through Education, Support and Health (FRESH) cohort, in Durban, South Africa, in collaboration with the Ragon Institute of MGH, MIT and Harvard. With the City of Hope/California Institute of Regenerative Medicine (CIRM) and the UCSD Alpha Clinic, we will soon start a clinical trial of a chimeric antigen receptor (CAR) T cell and we will evaluate the perspectives of people with HIV. I am also involved in the BEAT-HIV Delaney Collaboratory, where I lead the Social Sciences and Ethics Working Group.
- What are the main questions or problems you’re trying to solve with your research right now?
Priority research questions are those that were raised during the 2nd Analytical Treatment Interruption (ATI) consensus workshop that took place in Nairobi, Kenya, in May 2024. For example, main questions will be how to build participant considerations in ATI trials, such as strategies to reduce the risk of HIV transmission during analytical treatment interruptions, and ways to support the psychosocial and mental health needs of participants and improve participants’ experiences before/during/after HIV cure trials.
- Are there any recent discoveries or findings from your work that you find particularly exciting or promising?
Dr. John Sauceda (UCSF) and I are compiling exciting data from the UCSF ATI clinical trials. We hope to be able to replicate similar results in ACTG HIV cure trials. It is interesting to be able to characterize the entire trajectory of participation in HIV cure research. We are finding that will need to follow a journey approach to HIV cure research. We will also need to continue to invest in building the psychosocial research and support infrastructure.
- Community Engagement:
- How important is it for you to engage with community members or stakeholders in your research process?
It is critically important to engagement community members and people with HIV in the entire research process, from defining the research questions to reporting of research results and defining the next set of priority questions. Engaging community members and people with HIV helps ensure that the research remains most relevant to the communities that we are trying to serve. For these reasons, several people with HIV serve as co-investigators on my research projects.
- Can you share an example of a time when community input or collaboration influenced your research direction or outcomes?
Community members and people with HIV often have solutions to critical challenges and hurdles in the field of HIV cure research. The most salient example is the UCSD Last Gift cohort, where people with HIV are willing to donate their tissues at the time of passing to help characterize HIV reservoirs throughout the entire body. For the first time, we have been able to confirm that different brain compartments were HIV reservoirs. Thanks to our community partners Jeff Taylor, Andy Kaytes and Thomas Villa, we have been able to resolve critical conundrums, such as how to prioritize the use of donated human biological materials in the context of HIV cure research at the end of life (https://pubmed.ncbi.nlm.nih.gov/37252012/). People with HIV are now engaging with the U.S. Food and Drug Administration (FDA) around the possibility of testing interventions at the end of life, to advance HIV cure science.
When we take time to engage community and people with HIV, we realize the amazing input they can have on science. This makes our science better and more acceptable, ethical and humanistic. Community involvement takes times and due process, and it should not be considered a volunteer activity.
- Sociobehavioral Priorities:
- In your opinion, what are some of the most pressing sociobehavioral issues we face today, particularly in the context of the ACTG?
Some of the most pressing socio-behavioral issues we face today will be around conducting HIV cure-related ATI trials with justice and equity considerations. Slow recruitment in ATI trials remains a significant hurdle, we will need to ensure HIV cure trials with ATIs remain acceptable to our communities, with adequate participant considerations and partner protections. HIV cure trials will also need to be implemented in settings that bear the greatest burden of the epidemic. For this reason, I am very inspired by the Global Gene Therapy Initiative (GGTI), led by Dr. Jennifer Adair and Dr. Cissy Kityo. GGTI builds innovative cell and gene therapy clinical trials with equity, access and capacity building considerations on the front end.
In terms of the broader ACTG Network, we will need to address the therapeutic needs of people with HIV and hepatitis B. The LATITUDE trial (ACTG 5359) also highlighted the critical importance of building behavioral outcomes to serve the needs of people with HIV who could benefit most from novel HIV therapeutic options. It is amazing that the tuberculosis field is taking a person-centered approach, and we can learn a lot from this.
- How do you see your research contributing to addressing these issues within our network?
Socio-behavioral sciences can be used to bridge the tremendous innovations we are witnessing in the field of HIV cure research with unmet needs of people with HIV. Socio-behavioral sciences also help us strengthen the evidence we collect. We should prioritize interventions that are likely to have the highest impact in improving the quality of life for people with HIV. I believe this will come down to the value patients/participants (and their providers) will ascribe to novel therapeutic regimens and how effective we are in engaging with communities.
- Implementation and Impact:
- Moving forward, how do you think we can best implement the insights from your research into broader societal networks or frameworks?
Since interventions are bio-behavioral, it will be important to ensure socio-behavioral sciences and community-engaged approaches are implemented in a sustainable way across the ACTG Network. Clinical trials will need to be build with socio-behavioral objectives and outcomes. As HIV cure trials are scaled up in resource-limited settings, more support will need to be dedicated to community and stakeholder engagement and measuring the outcomes of these activities. Socio-behavioral sciences will need to be integrated under the scientific priorities of the various ACTG Transformative Science Groups (TSGs). Because the scientific questions will depend on each TSG or therapeutic area, there should be socio-behavioral research (SBR) cores built under each TSG, like Virology or Immunology Lab Cores. If we hope to be able to gain from and implement SBR insights, there will need to be more basic support for and political capital behind socio-behavioral research activities.
- What are the key challenges or obstacles you foresee in implementing these ideas, and how might they be overcome?
Critical challenges include power imbalances between research and communities as well as the perceived ‘hierarchy’ of the sciences (as we are often reminded). However, the current drug development pipeline often adopts a paternalistic approach and assumes that people will adopt any treatment option that becomes available. What if we were to build interventions based on what people need or want? How do we ensure the input of community members and people with HIV gets incorporated into clinical trial design? Resolving these challenges would require a paradigm shift. Centering patients and communities is one way to help increase recruitment and retention and ensure downstream uptake of interventions. Doing robust socio-behavioral research up front to understand what interventions people with HIV want to prioritize could also save us money and avoid investing in strategies that may be unappealing.
We will need to show the value of socio-behavioral sciences in helping inform a robust and community-engaged scientific agenda. We will also need to ensure scientific priorities that the community deems most critical can be acted upon. For example, people with HIV are aging globally. More resources will need to be dedicated to research on aging issues. Another major challenge is the lack of centralized infrastructure and resources dedicated to community engagement and communications around clinical trials in the ACTG Network, and this infrastructure should exist.
- Are there specific policy changes or societal shifts you believe are necessary to support the application of your research findings?
One change would be for funders to require that funding be used to answer biomedically relevant, and methodologically robust socio-behavioral research questions, and create a mechanism dedicated to answering the highest priority research questions. I often wonder if there should be fewer but better supported clinical trials in the HIV cure research field. For example, when the psychosocial support infrastructure exists, people with HIV are more willing to undergo risk, and are willing to stay in the analytical treatment interruption longer.
Another policy shift would be the creation of a mechanism dedicated to community and patient engagement that is not tied to a specific clinical trial, but more focused on developing long-term trust with the community in different settings. We also need to solve the challenge of compensating community members for their critical work.
Not to get too political, but will also need to carefully monitor the HIV criminalization, anti-LGBTQIA+ and anti-abortion landscapes as these may set up back in years to come, particularly in research protocols that require people to interrupt HIV treatment.
- Personal Insights and Reflections:
- What motivates you to continue your work despite challenges or setbacks?
The extreme altruism and dedication of people with HIV who keep us honest every day is what motivates me to continue my work despite challenges or setbacks.
- Future Directions:
- Looking ahead, what are the next big questions or challenges you hope to tackle in your field?
Some of the biggest questions and challenges in my field will be to implement the recommendations from the 2nd ATI consensus workshop that took place in Nairobi, Kenya, in May 2024. To support the continued success of HIV cure trials with analytical treatment interruptions, we will also need to build HIV cure trials in a way that meets both the biomedical and psychosocial needs of participants and their partners. For example, how can we build benefits for participants in risky HIV cure trials with analytical treatment interruptions, to tilt the balance of benefits to risks? We will also need to figure out what the future landscape of HIV cure research will look like, with the scale-up of long-acting HIV treatment (https://pubmed.ncbi.nlm.nih.gov/38386494/).
To meet the new U.S. Food and Drug Administration (FDA) guidance, (https://www.fda.gov/drugs/guidances-drugs/guidance-recap-podcast-podcast-patients-enhancing-diversity-clinical-trial-populations-eligibility), We will also need to engage more diverse participants in clinical trials. As more trials are implemented in sub-Saharan Africa, we will need to ensure these are more focused on the needs of women, who will likely participate in greater number.
In addition to safety and efficacy, clinical trials should integrate equity, implementation and future access outcomes. This would help increase the chance that we can better serve the needs of the millions of people with HIV, tuberculosis and hepatitis globally.
- How do you envision the future of the ACTG evolving, particularly in relation to sociobehavioral dynamics?
I would envision more equitable dynamics between basic, clinical and translational scientists and socio-behavioral scientists and community members. As mentioned previously, creation of socio-behavioral research cores under each of the TSG may become an inevitable necessity.
- Are there emerging technologies or methodologies that you think will significantly impact your research in the coming years?
We need more advanced technologies to reduce clinical trial burdens. For example, the optimization of a home-based viral load test would greatly reduce the burden of participation in HIV cure trials with analytical treatment interruptions. We may need to find other ways to bring clinical trials to the people who could benefit most from novel interventions to reduce the participation gap.