Dear HIV Researchers, To Do Effective Research – Engage Us

April 20, 2017

The annual Conference on Retroviruses and Opportunistic Infections (CROI) is an annual gathering where advocates and researchers learn where the science on HIV is taking us. The findings can be both grand and granular. They answer questions, raise new ones or both. And not all of those questions are strictly about science. Two of AVAC’s partners have been reflecting on what they took away from the conference, insights that inform our thinking long after the sessions end and results are published.

Julie Patterson is an HIV prevention research advocate and public health professional who lives in Northeast Ohio. She is chair of the Case Western Reserve University/University Hospitals of Cleveland AIDS Clinical Trials Unit’s Community Advisory Board, a member of AVAC’s PxROAR program, and a member of the US Women and PrEP Working Group.

Recently, I had the opportunity to attend the Conference on Retroviruses and Opportunistic Infections (CROI) as a community educator scholar. It was a grand experience – a gathering of brilliant, hard-working research minds at one of the premier HIV scientific meetings that are held each year. It was truly an honor to be among them.

However, I’m not sure my presence was felt.

A cohort of us came to CROI to give voice to community needs and bring new research back to our communities. We see it as a two-way street.

On the first day of CROI, there is a workshop held for newer researchers called, “Program Committee Workshop for New Investigators and Trainees”. People awarded the Young Investigator and International Delegate Scholarship are required to attend in order to get an introductory overview of the conference, what to expect in the days ahead, and a primer on aspects of the science that may be unfamiliar. The attention is on the science and the scientists—new investigators and clinicians who are actively involved in research. The organizers encourage participants to ask questions because lab scientists aren’t always aware of the issues in epidemiologic research, virologists speak a slightly different tongue than immunologists. You get the idea.

Not surprisingly, community educators are also required to attend the workshop for new investigators. This is a great idea; the nature of these talks is more general than others at the conference, and provides a foundation for understanding key results. Unfortunately, the structure often does not allow the presence of community educators to be known. Sure, we ask questions, but mostly we are like ghosts – ethereal beings with messages from the past. Not quite real. Certainly not equals.

This year, in what I perceived as an attempt to turn this CROI norm on its head, one of the crucial lectures included in the workshop was centered on GPP—Good Participatory Practice. It was led by community activists, grounded in the lives of people living with HIV, and aimed squarely at the new investigators, and with this I agree wholeheartedly. The Martin Delaney Lecture honored his legacy and brought the attention back around to the communities who are struggling with HIV, to the people who are at the heart of this epidemic. The message: listen to community stakeholders, and you will hear what you need to know. Ignore them, and your research results will suffer. We will all suffer.

I was disappointed that this vital talk was held during lunch when many left the room to pursue other food options. Most of the awardees of the Young Investigator and International Delegate Scholarship stayed to eat a free box lunch, but the timing appeared to indicate that this lecture wasn’t as important as the others. It would have been easy to miss it and not be held accountable.

Researchers, I’m here to say that you are accountable to us. We need you on our side and to see this through to the end. Our goals are the same—we want to end this HIV epidemic, to roll out a vaccine that will prevent new infections, to find a cure that works for everyone, to lead happy, healthy and long lives full of purpose and meaning, full of love and adventure. We want to see all of it in our lifetimes, just like you.

I tend to follow HIV prevention and public health research closely, so those were the sessions that I attended. Time and again, I sensed the urgency in the tone of the presentations. For that I am grateful. We must continue to push forward. Yet I also heard something else, even from prominent scientists—a scientific expediency that can leave communities behind.

Two significant HIV prevention clinical trials that are currently being conducted under the umbrella name of the “AMP Studies”—HVTN 704/HPTN 085 and HVTN 703/HPTN 081 are a case in point. I sit on the Community Working Group for these trials that are studying the efficacy of antibody mediated prevention. The HVTN 704/HPTN 085 trial is recruiting cisgender heterosexual women at risk in South Africa. In the US, Peru, Brazil and Switzerland, HVTN 703/HPTN 081 is recruiting cisgender men and transgender people who have sex with men.

Unfortunately, on multiple occasions at CROI, when I heard researchers refer to the AMP Trial, they neglected to mention the involvement of transgender people.

This may seem like a small oversight. Surely it is acceptable to use shorthand amongst fellow researchers? Everyone knows that referring to MSM as the target population for recruitment in this situation includes transgender people, right? Wrong. Transgender and gender non-conforming (TGNC) people don’t necessarily assume it. We all need to see ourselves in HIV prevention research.

Will this study collect data in such a way that we can separately analyze findings that are specific to TGNC participants—if not,we will have lost an invaluable opportunity. Will TGNC people at risk for HIV see results from AMP as applicable to their lives? If our experience with PrEP is any indicator, the answer is no, unless the investment continues to be made in TGNC people. AMP has included TGNC stakeholders early in the research process- from choosing research questions to protocol development, from design of informed consent to rollout of marketing materials. Now advocates are watching to ensure that it continues—from interpreting results to follow-on studies and implementation, all the way to the next trial. Every step of the way. Every step.

The AMP Trial has helped to set a new standard for transgender inclusion in HIV prevention research, but it is only one example of how GPP can be utilized. There are so many more. Community stakeholders have to be involved at every step.

In the end, researchers, my message isn’t to watch your step, it’s to walk alongside us. We can’t do it without you, and you can’t do it without us. As community stakeholders, we bring information to the table that you may never know without our voices. Knowing it up front will make the science more efficient, more ethical, and better in the long run.

For over 30 years, HIV research has been on the cutting edge of engaging affected communities and working together with activists. We need to keep that momentum going. I look forward to it.

Editor’s Note: AVAC’s Stacey Hannah led the presentation during the session on Good Participatory Practice (GPP). GPP is a set of guidelines developed by AVAC and UNAIDS in 2007 to engage affected communities and all other stakeholders in the design and conduct of biomedical HIV prevention trials. GPP has been widely adopted and is instrumental to a research process that yields trusted results.