Topic: Consumer Involvement
Consumers (persons living with HIV/AIDS and their families) are involved in multiple Ryan White activities. Consumer involvement in planning councils and other planning bodies is to ensure that affected communities are involved in determining needs and how best to address them. Consumer participation in Consumer Advisory Boards (CABs) is to ensure that clinics hear from and involve patients in care design and delivery.
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Guidelines and Manuals
Dissemination of Evidence Informed-Interventions ProjectNovember 2017
The Dissemination of Evidence-Informed initiative has produced four evidence-informed Care And Treatment Intervention (CATI) packages.
Webinars and Training
Boston Public Health CommissionMay 2015
Video to recruit new members for the Ryan White Part A Planning Council, featuring consumer voices.
National Quality CenterJanuary 2015
Online learning on key quality improvement concepts, tailored for consumers of HIV care.
These tools were developed to help health care providers adapt SPNS models addressing how to engage hard-to-reach people living with HIV/AIDS (PLWHA) into care within their current operations.
National Quality CenterApril 2009
Online learning on key quality management concepts.
National Quality CenterAugust 2006
Facilitator guide to train consumers to understand performance data and empower them to partner with their health care providers.
Disponible en español: Cómo asegurarse de que su atención médica relacionada al VIH sea la mejor posible.
Tools and Job Aids
Planning CHATTJune 2018
Part A planning council member, and Part A grantee, roles and responsibilities.
National Quality CenterJanuary 2013
Description and application for Training of Consumers on Quality (TCQ) program that seeks to increase the number of people living with HIV (PLWH) actively participating in local quality management committees or regional quality improvement activities.
HRSA HIV/AIDS Bureau (HAB)April 2009
Toolkit to assist trainers and program directors in planning a peer training program for HIV-positive peers who work to engage and retain people living with HIV/AIDS in health care.
HRSA HIV/AIDS Bureau (HAB)September 2007
Sample protocol outlines steps and activities for the conduct of a town hall meeting as part of the community needs assessment ot strategic planning process.
HRSA HIV/AIDS Bureau (HAB)August 2007
Tools for use in a program whereby peer advocates work in a multidisciplinary team to engage people living with HIV/AIDS in care. Part I (Supervisor's Guide) and Part II (Peer Advocate Toolkit).
New York State Department of Health AIDS InstituteAugust 2006
Guide on ways an organization can involve consumers in quality,
Including the Following:
- Representation on the Board of Directors
- Establishment of an HIV-specific Consumer Advisory Board (CAB)
- Consumer representation on an existing CAB
HRSA HIV/AIDS Bureau (HAB)January 2005
Materials to help programs develop strategies to employ Ryan White consumers/people living with HIV/AIDS.
HRSA HIV/AIDS Bureau (HAB)January 2005
Workbook on setting up and operating a consumer advisory board (CAB), with attention to CAB operations for Part D (Title IV) programs targeting women, infants, children, and youth. Sections cover:
HRSA HIV/AIDS Bureau (HAB)January 2004
Provides an overview of recruitment and retention strategies which planning councils and consortia can use to support membership. Includes worksheets to assess planning body operations related to member dissatisfaction and to the use of recruitment, training and member engagement strategies.
HRSA HIV/AIDS Bureau (HAB)March 2003
This document has outdated information on HIV/AIDS and the structure of the Ryan White HIV/AIDS Program. However, training resources on participating in a planning body are still relevant.
Reports and Best Practices
Next Step and MassCAREMay 2012Guidebook for multiple audiences that outlines steps (called Solutions in the guide) for transitioning youth from pediatric care to adult services.
U.S. Department of Health and Human ServicesFebruary 2018
Portal for HIV/AIDS information from the U.S. federal government-from facts about HIV/AIDS, where to get services, policies and programs and more.
Enlace principal a recursos clave de sitios del gobierno federal de los EE.UU. en español relacionados con el VIH/SIDA. Incluye servicios de prevención, tratamiento y apoyo. Central link to key Spanish language resources related to HIV/AIDS from U.S. Federal websites. Includes prevention, treatment, and support services.
Website for consumers to learn about the approval process for drugs and drug devices as carried out by the federal agency, the Food and Drug Administration (FDA).