Topic: Consumer Involvement

Consumer involvement is a core value of the Ryan White HIV/AIDS Program. Consumers participate in planning Ryan White services at the local and state levels. As members of advisory boards, they provide valued guidance to clinics. Many clinics also benefit from consumer peer educators and outreach staff, who help to engage and retain people in care.

The resources on this page include methods for involving Ryan White consumers, tools for training HIV-positive peers, and guidance on supervising them.

Tools and Publications: Peer Programs for Engagement and Retention

• An Assessment of A Pilot Peer Navigation Program Linking HIV Positive Clients of Harm Reduction Services with Ryan White Clinical Service Providers
  Technical Report, Cicatelli Associates. July 2011
• Building Blocks to Peer Program Success: A toolkit for developing HIV peer programs
  Toolkit to support organizations and communities seeking to develop HIV peer programs to engage and retain PLWHA in care and treatment.
• Building Blocks to Peer Program Success: A toolkit for training HIV-positive peers to engage PLWHA in care
  Toolkit to support the training of HIV-positive peers who work to engage and retain people living with HIV in health care. Also available in Spanish
• Lessons Learned from the Peer Education and Training Sites/Resource and Evaluation Center (PETS/REC) Initiative 2005-2010
  Report shares ideas and approaches so program planners, policy makers, evaluators, consumer advisory boards, funders and organizations can integrate HIV-positive peers into HIV care and treatment within their communities. Includes case studies.
• Consumer LINC (Linking Individuals into Needed Care)
  These materials presents a number of methods for involving Ryan White consumers in programs to engage other PLWHA into primary medical care and other needed services.
• The Utilization and Role of Peers in HIV Interdisciplinary Teams
  HRSA HAB Consultation Meeting Proceedings. October 2009
• Integrating Peers into Multidisciplinary Teams: Toolkit for Peer Advocates
  Cicatelli Associates. August 2007
  • Supervisor's Guide
• Organizations that CARE: A Toolkit for Employing Consumers in Ryan White CARE Act Programs Circle Solutions. 2004 (PDF)
• Making Sure Your HIV Care Is the Best It Can Be: A Consumer Training Workshop Guide
  National Quality Center. 2006. This guide introduces people living with HIV to performance measurement, and helps build the skills consumers need to actively contribute to improvements in their own care. The curriculum is presented as a facilitator guide designed for HIV patient educators, and outlines an interactive, modular workshop providing HIV care consumers with information and skills-building experiences in self-advocacy. Also available in Spanish. (PDF)
• Capacity-Building Generic Peer-Program Assessment Tool
  PEER Center tool for capacity building was used as a handout at the Ryan White HIV/AIDS Conference. August 2008 (PDF)
• Generic Work Planning Tool for Peer Program Design
  PEER Center tool designed to help organizations develop a road map for implementing a peer program within their organization; used as a handout at the Ryan White HIV/AIDS Conference. August 2008 (PDF)

Tools and Publications: Consumer Involvement in Planning

• Consumer Digest: Making a Difference
  HRSA HIV/AIDS Bureau. Publication developed to help community members become involved in local decision-making that will determine what HIV services are available in their community (e.g., Ryan White planning councils). 2003 (PDF)
• People Living with HIV Sourcebook
  HRSA HIV/AIDS Bureau. This guide focuses on increasing consumer participation in Ryan White initiatives. 2000 (PDF)
• Planning Council Primer explains Part A and how community planning works. (PDF)
• Getting it Right: A Self Assessment Tool for Consumer Advisory Boards Developed by AIDS Alliance for Children, Youth, and Families for Ryan White Program CABs. 2008 (PDF)

Websites

• PEER Center: Website for the Peer Education and Training Sites/Resource and Evaluation Center (PETS/REC) Initiative includes many practical tools, case studies, videos, and resources.
• Ryan White Planning Councils
  List of all RW planning councils; many council websites include training and orientation information for their members.

Videos

• The Peer Program Makes a Big Difference 2009
  Managing Client Care and Treatment In this four-minute video, Leo, a client, and Jerry, a peer at Kansas City Free Health Clinic describe how they have worked together to identify strategies to help Leo communicate more effectively with his doctor, manage his HIV treatment, and more. This is the story of how one peer educator supports one client’s efforts to manage his HIV self-care. It does not represent all peers and clients, nor does it portray all the ways peers help clients cope with the daily stresses of living with HIV.
• The Power of Peers to Change Lives
  In this 5-minute video, Kathleen Clanon, MD, Alameda County Medical Center in Oakland, CA and Sally Neville, RN, MSN, Director of HIV Primary Care at Kansas City Free Health Clinic in Kansas City, MO talk about how peers help their patients adhere to HIV treatment.

TA Call Archives

• Developing a Peer-based Early Intervention Program
  This webinar presented by DTTA staff and the Project Consumer LINC contractors drew from lessons learned in during this program. The webinar objectives were to: 1)familiarize participants with the components of an Early Intervention Services Program, as described by the HIV/AIDS Bureau; 2) to summarize the benefits of using peers; and 3) to provide a step-by-step process for developing a peer-based EIS program appropriate for your service area
  • Webinar audio file (.mp3)
  • Download Call Slides (PPT)
  • Download Handout
• Training Peers to Support Clients in HIV Care and Treatment (audio only) Download presentation December 9, 2010
• Integrating Peers into HIV Care and Treatment November 17, 2010
• Understanding and Refining the System of Care: Roles of Peers and the Planning Process Download presentation July 6, 2010
• Tools for Monitoring and Evaluating HIV Peer Programs January 26, 2011
• Continuing Education for Peers and Supervisors: Disclosure May 3, 2010
• Evaluating peer services in HIV care and treatment February 11, 2010
• Supervising Peers Who Support Clients in HIV Care and Treatment: Part 2 November 3, 2009
• Supervising Peers Who Support Clients in HIV Care and Treatment: Part 1 October 7, 2009
• Training Peers to Support Clients in HIV Care and Treatment August 5, 2009
• Recruiting, Hiring, and Supporting HIV Positive Peers in HIV Care and Treatment July 1, 2009