Partners In+Care

PARTNERS IN+CARE

National Quality Center team
about partners
in+care

We’re so glad you’re here and look forward to having you as a partner in HIV care: a Partner in+care! Read on to learn more about the partners’ roles and how YOU can get involved. If you’re already involved, share your experience and end+disparities story with us at the bottom of this page!

With the right information and support, people living with HIV (often called consumers or patients) can learn how to live as long as those without HIV and potentially never progress to AIDS. HIV has become a manageable, chronic illness. However, many people living with HIV are not able to access the care and support needed to manage their disease.

The goal of the Partners in+care framework is to provide a model where people with HIV can get involved in improving the quality of HIV care provided at their clinic and in helping others access this care. This toolkit provides the resources needed to do so.

Partners in+care draws upon the knowledge and experience of those currently living with HIV. Consumers understand the care they get at their clinic and why some may not be able to access care. Consumers can support each other in unique ways because of their shared experiences. To help do this, consumers, working in collaboration with National Quality Center (NQC) staff and HIV service providers, created this framework of three roles that people living with HIV can fill to improve care:

The Mentor – Engages and supports peers in managing their own HIV care
The Ambassador – Shares personal and clinic success stories
The Architect – Helps create and support systems that improve quality of care

The purpose of these roles is to create advocates for high quality care. Partners in+care can help build the capacity of people with HIV to be active partners in improving HIV care. A great big thank you goes out to our friends in field who helped us create this toolkit with their tireless efforts. Special thanks to Adam Thompson, Katya Roytburd, Dennis Creedon, Jonas Nicotra, and Michael Hager who led discussion groups focused on each toolkit. Additional thanks to Emily Chen, Sedona Hoppe-Brosse, Sagar Desai, Ariane Litalien, and Hazel Lever who shepherded this work as it was assembled over the years.

 

GENERAL TOOLKIT FOR PARTNERS IN+CARE

opportunities for
participation

As a person living with HIV:

·Learn about end+disparities Learning Exchange and what HIV providers are doing to help end+disparities

·Add your voice to other consumer voices interacting in Partners in+care webinars and office hours

·Identify your skills and interests that align with one of the archetypal roles to get personally involved in this work

·Opportunity to interact with campaign spokespeople, NQC consumer coach, and NQC staff

As an HIV provider:

·Access to consumers that are ready and willing to learn about this work and how to get involved

·Receive updates on consumers who have signed up for partners in+care in their areas

contact

The Mentor

The Mentor role is meant to help to engage and support others in personal retention or viral suppression efforts. Mentors are the heart and hands of the roles – they engage directly with other patients in their social networks.

The Ambassador

The Ambassador role is meant to help spread the availability and quality of retention efforts from the perspective of a patient who has personally experienced the benefits of sustained retention in their local clinic or organization. Ambassadors are the face of each individual program and provide an opportunity for engagement with sharing of concrete examples related to how the local retention program can benefit patients.

The Architect

The Architect role is meant to help increase consumer voices in clinical quality management planning, implementation and evaluation across the Ryan White HIV/AIDS Program. Architects are consumer participants in quality processes that are also conduits of information flowing to and from quality activities.
National Quality Center team building

 

share your experience

Share your experience with the Learning Exchange. Don’t forget to attach a picture of your team at work.

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spokespeople

AMIR SIMON

MSM of Color

Amir is currently a student studying Human Services as well as a behavioral health specialist. For as long as he can remember, he has wanted to help people in any way that he could. Amir has always been a fighter for equal rights and an activist. After he was diagnosed 4 years ago with HIV, Amir was given a new outlook on life along with a deeper love and compassion for advocating for what he feels is right.

CECILIA CHUNG

Transgender People

Cecilia Chung is the Senior Strategist of Transgender Law Center, Co-Chair of the Amsterdam-based Global Network of People Living with HIV, member of the Global Reference Group of Positive Women and an internationally recognized civil rights leader who advocates for HIV/AIDS awareness and care, LGBT equality, and social justice. Cecilia has been a vocal advocate for transgender women and people living with HIV. Cecilia has received numerous awards for her work, including Levis Strauss & Co. Pioneer Award, Human Rights Campaign Community Service Award and the inaugural Cleve Jones Award from the San Francisco AIDS Foundation. As an Asian transgender woman living with HIV, she has dedicated herself to ending stigma, discrimination, and violence in all communities.

DAWN TROTTER

African American & Latina Women

Dawn Trotter was diagnosed with HIV in 2007 and a heart condition soon after, given a prognosis that she would likely live for one year. Her uncertainty about her health mobilized her to learn as much about it as possible and inspired her to share what she had learned with others as overwhelmed as she had been. A mother of three, she has gone on living far beyond that year and has served on the NYS AIDS Institute Consumer Advisory Board since 2014 and became Co-Chair of the Peer Certification Board in 2016. Currently, Dawn works full time at Evergreen Medical Group as a Retention Support Assistant, applying her passion to maintain HIV positive people in healthcare and promoting their adherence toward viral suppression to her daily work.

DEVIN QUINN

Youth

Devin Quinn is a Peer Navigator for Nationwide Children’s Hospital as well as a public speaker and advocate for causes surrounding HIV. Devin has been living with HIV since 2012 and has used his voice in the community to raise awareness and understanding for those affected by HIV. Devin is also a board member of Youth Across Borders, a non for profit organization that specializes in fostering connections in young people via a service trip to an orphanage in rural Honduras known as Montana de Luz.

JOEY PONS

MSM of Color

Joey began his activism in New York City in 1987 with ACT-UP the same year he was diagnosed with HIV. He was also co-founder of the organization Queer Nation and served as president of the National Latino Lesbian & Gay Organization (LLEGO). His career as an activist for the LGBT community is evidenced by having served on the boards of directors of 23 organizations. As a leader of the LGBT community he was invited to the White House twice during the presidency of Bill Clinton. In Puerto Rico, he has been co-founder of PR Community Network for Clinical Research on AIDS, the Sabana AIDS Civil Rights Litigation Project, Community Initiative and Foundation Article II. He has distinguished himself as a respected lobbyist.

KNEESHE PARKINSON

African American & Latina Women

Kneeshe was driven at a very young age to work in the social services field by volunteering with the Helena Hatch Center, an organization serving women with HIV/AIDS. Kneeshe’s passion stemmed from the HIV diagnosis of her aunt, Helena Hatch. Her illness and unfortunate death had a dramatic impact on Kneeshe’s life. Kneeshe now serves as the Vice-Chair of the Missouri Ryan White Part D Community Advisory Board, on the Consumer Advocacy Committee for the National Quality Center, and as a Consumer Liaison for the National Quality Center’s HIV-Cross-Part Care Continuum Collaborative. Kneeshe has an Associate’s Degree in Human Services and currently attends the University of Missouri-St. Louis pursuing a Bachelors of Social Work. She has gained the academic honor of Phi Theta Kappa and has been on the Dean’s list the past two years.

NAHUEL SMITH

Youth

Nahuel, who is originally from Argentina, has been a consumer for 11 years and currently resides in Charlottesville, Virginia, where he serves as the peer services coordinator for the University of Virginia Ryan White Clinic. Nahuel is an experienced peer educator, public speaker, and has worked to develop new approaches to engage people in care and prevention of HIV/AIDS. In his first professional role in the United States, he helped to shape design and management of a peer coach program and evaluate the resultant outcomes. He has effectively worked to bridge gaps between stakeholder groups in order to develop local and regional strategies for helping consumers with HIV/AIDS. Nahuel has successfully spearheaded initiatives to disseminate peer learning through campaigns, collaboratives, and other initiatives.

TEO DRAKE

Transgender People

Teo is a spiritual activist, an educator, a practicing Buddhist and yogi, and an artisan who works in wood and steel. A blue collar, queer-identified trans man living with AIDS, Teo’s activism exists at the intersections of gender, sexuality, race, class, ability, and spirituality. He serves on the faculty and board of Off the Mat, Into the World, the national advisory board of the Transgender Law Center’s project Positively Trans, and is a founding member of the Transforming Hearts Collective. His writing can be found in the anthology Yoga and Body Image and at the blog www.rootsgrowthetree.com.