Studies have shown that people living with HIV who regularly take their anti-HIV medications are healthier and less likely to pass the virus to others. Yet many factors, such as side effects and availability of antiretroviral therapy (ART), can influence medication adherence. Patricia Segura, RN, MPH, works at the AIDS Clinical Trials Group (ACTG) Network’s IMPACTA Clinical Trials Unit in Lima, Peru. She is one of the research nurses leading a study to determine the best practices for ensuring adherence.
“Adherence sounds simple in theory; however, many factors influence a consistent ART regimen,” says Segura. “It is important for Peruvian people who are living with HIV/AIDS, but who have never been on treatment to start a routine they will follow for life. I think this study could give us relevant information to achieving this aim.”
The Durability of Adherence in Self-Management of HIV (DASH) Trial or A5250 is being conducted at Segura’s site and the ACTG’s University of California San Diego Antiretroviral Research Center. Treatment naive patients will receive either standard adherence counseling at their site or individualized adherence self-management training. If they receive the individualized plan, they will answer a questionnaire with their answers leading to the creation of their plan. Both groups will check in at weeks four and 12 and, then every 12 weeks for a period of 72 weeks.
Tari Gilbert, MSN, is a Nurse Practitioner at the ACTG’s University of California San Diego Antiretroviral Research Center. She works with Segura as a nurse researcher on the DASH trial.
“Patty is one of the most delightful people I’ve had the good fortune to work with during my tenure with ACTG,” Gilbert says. “Not only is she bright, competent, learned and compassionate, she creates a work environment for her staff that encourages them all to do their very best. As a result, their clinic provides exceptional care to a population that is more commonly stigmatized and marginalized within Peru, as it is in many places. I had the good fortune of speaking with participants at IMPACTA, and Patty’s influence was obvious in the care and inclusion that they felt at the clinic. And beyond being a patient champion, she is a champion for nurses as well, which was made clear to me when I met the nurses who provide HIV care in Lima. Her leadership and clinical abilities are an exemplar to me and many others.”
In addition to being a nurse investigator on the DASH trial, Segura has been the IMPACTA site’s Head of Community Engagement since 2008. In this role, she and her team manage recruitment, retention and community education efforts for not only the ACTG, but also the Microbicide Trials Network (MTN) and the HIV Vaccine Trials Network (HVTN). If recruitment efforts identify someone eligible for a research study, Segura works with IMPACTA clinic staff to schedule appropriate appointments.
Carrie Schonwald worked for six years at the HVTN as the Community Engagement International Project Manager. In this capacity, she was the key liaison at the network’s core operations center in Seattle for Community Educators at HVTN sites around the world, including Segura’s IMPACTA site.
“Patricia is a gifted colleague,” says Schonwald. “She cares profoundly about her community, the HIV epidemic and the people who work with her. She is a thoughtful innovator- someone who methodically determines the most creative and comprehensive way to lead her loyal team to reach deeply into their community and engage them in a meaningful way to help fight and eradicate HIV. She is a tremendous asset to the global HIV research community and I feel lucky to have worked with her.”
Social media has become an electronic tool in the outreach toolbox. Segura manages the IMPACTA site’s institutional Facebook page, research pages and fun Facebook pages. The research pages host information about enrolling studies by population. For example, there is a Facebook page about vaccine research studies for people at high risk for contracting HIV. The fun Facebook pages list the site’s events, like its open house each Thursday, and pay tribute to its study participants with photos of love quilts. Her familiarity with social media makes Segura a good fit for the ACTG’s Outreach, Recruitment and Retention (OR&R) subcommittee.
Each ACTG site has a group of local volunteers who serve on the site’s Community Advisory Board (CAB). The IMPACTA CAB formed in 2001 and Segura is the site’s CAB Coordinator. She says the CAB’s members represent Lima’s diverse population of people affected or infected by HIV. The CAB provides IMPACTA with feedback on its scientific agenda and research studies.
“Many of our members have served for as many as 11 years with an average of six years, which demonstrates the commitment and experience of our CAB,” Segura says. “In 2008, CAB members made the decision to increase meeting frequency from once a month to twice a month. This action is a healthy indicator of our CAB’s commitment to ensure community input.”
Segura thinks future studies should focus on cure research. She says the ACTG is in a position to make the end of AIDS a reality.
“Since attending my first ACTG annual meeting in 2008, the Network has had a big impact on me,” Segura says. “That was my first opportunity to understand the complexity, but at the same time, the ability of the ACTG leadership to integrate different aspects of research in one place. Relevant researchers, prominent technicians and community leaders working together with the same direction, but different points of view is the expression of what a common dream can inspire among people who are committed to fight the HIV/AIDS epidemic worldwide.”