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HIV Clinical Practice Guidelines Dissemination
and Evaluation Project
- Background
- Agenda for Dissemination and Evaluation
- Patient Outcomes Research
- HHS Working Group on HIV Treatment Information Dissemination
Background
The U. S. Public Health Service periodically issues updated clinical guidelines for the use of anti-viral agents in the treatment of HIV-infected adults and adolescents and another set for treatment of pediatric HIV infection.
The guidelines are central to improving the quality of care for people with HIV through better utilization of anti-viral therapies and the latest diagnostic tools. Patients, physicians, health care providers, and health educators all need to understand the information contained in these frequently updated guidelines in order to make effective treatment decisions.
Setting Agenda for Dissemination and Evaluation
When the guidelines were first released, the Forum sponsored a multi-part project to assess how to effectively disseminate the information in the guidelines and then examine the effects that the guidelines are having on health care delivery and patient outcomes.
In May 1998, the Forum, with the support of the Henry J. Kaiser Family Foundation, convened a workshop to discuss the dissemination and evaluation of the guidelines. The workshop brought together over 80 individuals, including experts in information dissemination, clinical researchers, health care providers, patient advocates, and representatives of federal and state government agencies and the pharmaceutical industry.
The workshop participants developed a strategic plan for the development of HIV guideline dissemination efforts contained in "Dissemination and Evaluation of Clinical Practice Guidelines for HIV Disease." Important common themes that emerged in the workshop include:
- Coordinated efforts to educate health care providers and patients about HIV treatment are essential to the overall success of the treatment strategies in HIV disease and for the protection of the public health.
- Simple messages are needed about the unforgiving nature of therapy when it is not used correctly by physicians and patients and about the public health ramifications of drug resistance.
- While there are many useful current dissemination efforts, this is not enough to meet the need.
- While dissemination efforts must be implemented on a local level and will require public and private sector collaboration, leadership for the overall effort should be coordinated at the highest levels of the U.S. Department of Health and Human Services (DHHS).
- Treatment information dissemination efforts must be ongoing and able to respond to rapidly changing information based on new clinical research developments.
- Dissemination efforts must recognize the diverse needs of different kinds of service providers and patients.
- Any and all efforts to disseminate HIV treatment information must include an evaluation component. Without evaluation, implementation will be significantly less successful.
Using Patient Outcomes Research to Evaluate the Impact of the Guidelines
The ultimate goal of the guidelines is to improve the clinical outcomes of people with HIV disease and the Forum initiated an effort determine a research agenda for studying the guidelines' impact on patient outcomes.
As a first step, the Forum examined how outcomes research can be better applied to examine the effects of new standards of care for HIV disease in a report entitled The Potential of Patient Outcomes Research in HIV Disease, which provides a summary of the methodology, scope and principles of patient outcomes research.
Patient Outcomes Research Agenda
In September 1999, the Forum convened a workshop on patient outcomes research and HIV disease attended by leading researchers, health care providers, government officials, patient advocate, and pharmaceutical and managed care industry representatives. Developing an Agenda for Patient Outcomes Research in HIV Disease provides both summaries of the workshop presentations and the research agenda developed by the workshop participants.
HHS Working Group on HIV Treatment Information Dissemination
At the request of the government Co-Covenors, Anthony Fauci, M.D. and Eric Goosby, M.D., of the PHS Guidelines Panel on Antiretroviral Therapy for Adults and Adolescents, the Forum facilitated this Working Group made up of representatives from the Office of HIV/AIDS Policy (OHAP), the National Institutes of Health, the National Library of Medicine, the Health Care Finance Administration (HCFA), the Health Resources Services Administration (HRSA), and the Centers for Disease Control and Prevention (CDC). The Working Group met on a regular basis to define the role of HHS in disseminating treatment information, identify the methods for fulfilling that role, identify the roles that each agency and program can play in implementing the efforts, and determine how to coordinate efforts between agencies. The work of the Group resulted in a report entitled Report of the DHHS Working Group on Dissemination of HIV Treatment Information. The plan was accepted by then Secretary of Health and Human Services Donna Shalala and portions were written into the legislation re-authorizing the Ryan White CARE Act. Other portions of the plan were included in the Request for Proposal for a federal AIDS Treatment Information Service contract.
Forum for Collaborative HIV Research
Department of Prevention and Community Health
School of Public Health and Health Services2175 K St NW Ste 700
Washington, DC 20037
Phone: 202 530-2370
Fax: 202 530-3923
info@hivforum.org