Peers United Group (PUG)/YACAB
PHACS established the Peers United Group (PUG) to create space for the voices of study participants to be heard by leadership and by each other.
The PUG (formerly known as the Young Adult CAB) is made up of volunteers (ages 16 and older) from all over the U.S. who participate in one of PHACS’ active studies and who take a leadership and advocacy role within the study. Since January 2013, participants have met once a month via a one-hour conference call to discuss research, to provide feedback to PHACS about various study issues, and to have meaningful discussions around challenges facing young adults as they transition into adulthood.
"I am part of the YACAB because it makes me feel like I’m helping in some sort of way. There's nothing to lose [being in this space], and I get to be part of something and feel helpful in a way that is good for me. For example, the other day I heard Magic Johnson [talking publicly about HIV] on the radio. I can’t do that, but I’m helping in my own way."YACAB Member
PUG/YACAB Mission
* Provide guidance and perspective to researchers for how to make the overall PHACS study better for young adults who are participants; and
* Offer relevant support to members of the PUG/YACAB, as well as to other young adults involved in PHACS
Call Topics
Call topics vary each month and are driven both by the needs of PHACS as new research materials and protocols are developed, and by the preferences of PUG/YACAB members themselves. Some calls have used a story circle/storytelling format to discuss an issue as it relates to our personal lives. Other calls involve having a discussion around questions sent out via email prior to the call or hearing from a guest speaker followed by a Q&A discussion format.
"Being part of the YACAB is meaningful for me because it's knowing that someone else [out there] has the same experience and can talk about it from an informed or educated standpoint."YACAB member
Previous calls have consisted of:
* Understanding PHACS and what it means to be part of a long-term research study
* Guiding various elements of the new AMP Up Protocol during its development, including the new online survey format and preferences for communicating with PHACS
* Reviewing mockups and content for a new website aimed at young adults in PHACS
* Discussing our experiences in various communities and how to make the PUG/YACAB a strong community of its own
* Holding a story circle about dealing with “transitions,” followed by a brainstorm for an FAQ on the topic of transitioning to adult health care for other young adults in PHACS
* Discussing different levels of advocacy and ways to become engaged in advocacy
* Sharing stories of HIV stigma
* Discussing how to handle situations in which we witness others making incorrect or hurtful comments about HIV
* Providing feedback on coloring books and comic books being developed as part of an HIV disclosure toolkit for caregivers
* Discussing how PHACS can use technology and media to communicate with study participants
"I am part of the YACAB because it helps me stay informed and updated on things that are going on, both now and in the future. You get to hear from different speakers and learn about things that you didn’t know about before."YACAB Member
Guest Speakers
We are always excited to have guest speakers join the calls to discuss issues relevant to our mission. In the past, our guest speakers included:
* An HIV/AIDS advocate explained her journey to advocacy and the role it plays in her life
* A PHACS CAB Liaison presented about PrEP
* A young adult presented about her time studying and working abroad
* Epidemiologists from PHACS discussed the flow of data in PHACS (as a longitudinal cohort study)
* A psychologist from PHACS discussing HIV stigma
Get Involved
"It's important that the YACAB exists because it can be hard for young people to come to meetings at the office sometimes, and people have school and responsibilities, so having the option to help over the phone is good. It's a great way to learn about research and make research better."Study Coordinator
We welcome any young adults who are at least 16 years old (no upper age limit) and participating in one of our active studies to join the PUG/YACAB! If you are interested in joining our PUG/YACAB, please contact Claire Berman to find out more.
We are always eager to have discussions about issues that are relevant for young adults, and we welcome new suggestions and speakers for our calls from both within and beyond PHACS.
If you are interested in being a guest speaker on a PUG/YACAB call or have a topic to suggest, please contact Claire Berman.
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