General Partners in+care

 

So you’re a Partner in+care.

We hope to provide you with the resources you need in order to function in any of the Partner in+care roles. This guide will allow you to find some of the specific information you need before you get started in any of the four roles. The resources below, as well as those listed in the table of contents for each role, are only suggested readings.

What is Partner in+care / What is a Partner’s role? / Steps to Becoming a Partner

You have probably already read our introduction, but in case you have not, here is a link back to the Partners in+care page. This document includes important information on what we are trying to accomplish and how we are going about it in Partners in+care.

What is Quality in Health Care?

This section will help you understand what we mean when we say QUALITY.

People Living With HIV: Who are they/we?

  • Robert Wood Johnson Foundation Issue Brief: Improving Quality Health Care: The Role of Consumer Engagement – This overview report illustrates both the complexity of the many ways that consumers interact with the health care system and the varying opportunities for engagement. Consequently, there are unlikely to be simple policy solutions to enhancing consumer engagement. But as the white papers and the discussions at the colloquium attest, two things are clear: First, consumer engagement holds great potential to spur health quality improvements. Second, it must not be viewed as a silver bullet, since consumers have neither the power nor the skills to transform health care systems on their own. Change will require a joint effort on the part of consumers, providers, payers, insurers and policy-makers. Link to the issue brief.
  • AIDS Education Training Center Engagement Workgroup – The AETC Engagement in Care Workgroup was formed to create a list of technical assistance resources that the Ryan White HIV/AIDS Program community can explore to get people living with HIV better engaged in their own healthcare. Link to the final products of the Engagement in Care Workgroup.
  • National Committee for Quality Assurance: Focus on Patient – NCQA in collaboration with Pfizer Inc released a publication providing practical examples of how patient engagement can help improve health care quality and value. Link to the NCQ Focus on the Patient.
  • Bi-partisan paper on engaging consumers using electronic resources – This report explores in greater depth the benefits of engaging consumers in their care, including the relationship between higher levels of patient engagement and better overall health system performance; how electronic tools can significantly boost consumer engagement; the current rate of adoption of these tools; policies that affect their use; barriers that must be addressed to increase their adoption; and recommendations to move forward beyond these challenges. The report also includes examples of specific electronic tools currently in use—and the positive results they are producing. Link to Bi-Partisan Paper on Engaging Consumers.
  • A Guide to Consumer Involvement – An NQC publication that provides background on meaningful consumer engagement. In addition, key strategies on how to achieve consumer engagement are shared with readers. Link to a Guide to Consumer Involvement.

What is the National Quality Center and the end+disparities Learning Exchange?

  • National Quality Center Website – NQC is the parent project of the end+disparities Learning Exchange. The website contains many resources and publications related to HIV quality management, including resources around consumer engagement, retention in HIV care, as well as viral load suppression. Link to NQC Website.
  • References/More information about retention and viral load suppression – A long list of references used by the end+disparities Learning Exchange to design the program and its offerings. There are dozens of research studies from the last 10 years referenced within. These resources can be used as additional evidence OF the importance of patient retention in HIV care. Link to overall references related to end+disparities Learning Exchange.
  • end+disparities Learning Exchange literature review – The end+disparities literature review includes a number of scientific resources intended to inform the direction taken by the Learning Exchange. Link to the literature review.

General Web Links for Additional Reference

  • General information on HIV, Ryan White HIV/AIDS Program, and HIV self-management – These materials are helpful in building your understanding of the basics you might need to have conversations with various people as a Partner in+care.
    • RWHAP Services – The Ryan White HIV/AIDS Program provides a comprehensive system of care that includes primary medical care and essential support services for people living with HIV who are uninsured or underinsured. The Program works with cities, states, and local community-based organizations to provide HIV care and treatment services to more than half a million people each year. The Program reaches approximately 52% of all people diagnosed with HIV in the United States. Link to the HRSA-HAB description of RWHAP services.
    • Living with HIV – AIDS casts an ominous shadow on our history and on our future as a Nation and as a people. But with this shadow comes light—from pioneers, professionals, volunteers, activists, and people living with HIV/AIDS themselves. These brave souls and the milestones and events that they have lived over the past quarter century have shaped the history of the Ryan White HIV/AIDS Program—and helped reduce disparities in access to health care for more than half a million people each year. This Web site captures that history, and the knowledge that only history can offer. In this way we honor the past, and use it to build an ever-improving response to HIV and AIDS. Link to the Living History Page.
    • Information about HIV – Centers for Disease Control page on basic HIV information. HIV stands for human immunodeficiency virus. It weakens a person’s immune system by destroying important cells that fight disease and infection. No effective cure exists for HIV. But with proper medical care, HIV can be controlled. Some groups of people in the United States are more likely to get HIV than others because of many factors, including their sex partners, their risk behaviors, and where they live. This section will give you basic information about HIV, such as how it’s transmitted, how you can prevent it, and how to get tested for HIV. Link to information on HIV.
    • Consumer Advocacy and Leadership – The New York City and New York State Leadership Training Institute was created by and for people living with HIV (PLWH). This program was designed to energize the PLWH Community. By covering topics such as community organizing, decision making, advocacy, and policy-making, PLWH Leadership Training Institute hopes to support the development of effective HIV-positive community leaders. This resource helps leaders build the skills they need to lead in the community at large—to continue making inroads into all aspects of community development. Link to leadership training institute.
    • Patient Self-Management and Shared Decision-Making – Patient self-management is the ability of patients, in a complementary partnership with their health care providers, to manage the symptoms, treatment, and lifestyle behavior changes, as well as the physical and psycho-social concerns that are a part of living with chronic diseases. Provider support for patient self-management is a key element in determining how well patients make appropriate decisions and take appropriate actions to promote their health and well-being. These sessions shared tools, best practices, and training concepts to help providers support their patients in self-management. Link to NQC Consumer Self-Management Resources.
    • HIV Prevention, Treatment, and News
      • CDC Basics on HIV Treatment – Although there is no cure for HIV infection, there are treatment options that can help people living with HIV experience long and productive lives. CDC and other government agencies continue to work on a variety of treatment-related activities, including: HIV/AIDS clinical research and drug trials; vaccine research; development of treatment guidelines and best practices; and creating and implementing treatment-related prevention strategies that can help stop new infections. Visit the page frequently to find updated HIV treatment information from CDC and other federal agencies. Link to CDC Basics on HIV Treatment.
      • The Body – The Body’s missing is to use the web to lower barriers between patients and clinicians, demystify HIV/AIDS and its treatment, improve the quality of life for all people living with HIV/AIDS, foster community through human connection. Link to The Body.
  • PEER Center Website – The home page for the Peer Education and Evaluation Resource Center. The PEER Center was designed to help Ryan White HIV/AIDS program organizations and others develop peer programs to support HIV-positive individuals as they enter and stay in care, adhere to treatment, and improve their quality of life. Link to the PEER Center Website.
  • Key Scholarly Articles – These articles provide an overview of the quality improvement issues involved in keeping HIV patients coming back for their medical care.
    1. Cheever – Engaging HIV Patients in care
    2. Giordano – Retention in care a challenge to survival
    3. Dutcher – Research on Impact of Peer Interventions

 

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