Consumers are Very Involved

Consumers are Very Involved

December 9, 2014

Consumers. Clients. Patients. PLWH.

Varied are the terms for people living with HIV disease—individuals who for 35+ years have mobilized and directed all manner of responses to the AIDS epidemic.

For the Ryan White HIV/AIDS Program, consumer involvement is not just required in the legislation but is also a driving force in:

  • Care delivery and care engagement—from peer navigators to clients taking on a more central role in managing their own care
  • Quality and service planning—from Consumer Advisory Boards to participation in quality management teams
  • Health coverage enrollment and retention—educating consumers about the fundamentals of securing and using health insurance
  • Community planning—especially to guide planning bodies in new directions in response to health care reform

Our Consumers/Patients topic page outlines an array of resources covering each of these areas. Below are highlights of just a few tools.

Select Consumer Tools

Engaging Consumers in the Continuum of HIV/AIDS Care

Multiple HRSA/HAB TA and training projects have developed resources to support the role of consumers as part of the HIV/AIDS care team in order to engage and retain people in care Examples include resources to train peers, like Building Blocks to Peer Program Success or a webcast series on empowering hard-to-reach patients, developed from Ryan White SPNS innovations in HIV care.

Grantees also have developed tools to engage consumers from the perspective of both patient self-management as well as provider roles in working with consumers. An example of the former is Positively!: HIV Self-Management Videos by the Baltimore Part A grantee in collaboration with HRSA’s National Quality Center. One provider-focused tool on the TARGET Center is a guide from Massachusetts, Moving on Positively: A Guide for Youth, Caregivers and Providers, that discusses transitioning youth from pediatric to adult care.

Submit your consumer engagement resources to the TARGET Center.

Black MSM living with HIV are fairly disadvantaged in being engaged in care and fully virally suppressed. To address these gaps in the Continuum of HIV/AIDS Care, a HRSA TA and training initiative started in mid 2014 is identifying effective models for engaging Black MSM into care, in part by collecting insights on best practices from the consumer community. Learn more about the Center for Engaging Black MSM Across the Care Continuum (CEBACC).

HRSA is not alone in promoting self-empowerment around the Continuum. The Centers for Disease Control and Prevention (CDC) released a new national campaign in September 2014 called HIV Treatment Works, which “aims to get more Americans living with HIV to stay in care and take treatment,” which “helps people with HIV live longer and healthier lives, and it prevents the spread of HIV.”

Enrollment in Health Care Coverage

The HRSA/HAB ACE TA Center has developed tools for providers and other enrollment assisters to help provider agencies as they work with Ryan White clients, including several resources that outline issues and key questions that providers and consumers are most likely to raise as they explore coverage options. 

Quality of HIV/AIDS Care

Multiple HRSA initiatives train consumers and others to participate in HIV/AIDS care. The HRSA-funded National Quality Center (NQC), which is devoted to improving the quality of HIV/AIDS programs, offers Trainings of Consumers on Quality to promote consumer engagement in agency quality improvement activities. NQC also has developed consumer self-management tools and maintains a consumer advisory committee to secure ongoing input. HRSA has also developed resources like a toolkit for employing consumers as Ryan White staff and a manual on setting up and operating a Consumer Advisory Board for a clinic.

Relatedly, the AETC network, the clinical arm of Ryan White, trains clinicians in HIV care and—as part of this work—taps consumers to serve as trainers/faculty members.

Planning and Decision Making

The earliest consumer involvement activities under Ryan White focused on planning as communities and states established planning bodies to determine needs and make decisions about how to allocate Ryan White resources. Make no mistake: consumer involvement is real and mandated in the legislation and HRSA/HAB policy. As the Part A Manual states: “No less than 33 percent of planning council members must be PLWHA who receive Ryan White Part A services (in the case of minors, this would include their caregivers) and who are unaligned with provider agencies that receive Ryan White Part A funding.”

Two oldies but goodies are the Planning Council Primer and the Training Guide: A Resource for Orienting and Training Planning Council and Consortium Members. Many grantees have developed supplementary resources to support consumers and other planning body members to take part in Ryan White decision making. These tools are available on websites for Part A grantees and Part A planning councils as well as Part B websites—all accessible via the TARGET Center.

Consumers are among the experts who participate in federal HRSA Objective Review Committees (ORCs) that conduct reviews of competitive grant applications for funding. HRSA has an open recruitment process to secure grant reviewers.