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Developing a conceptual framework for an evaluation system for the NIAID HIV/AIDS clinical trials networks.

ABSTRACT: Globally, health research organizations are called upon to re-examine their policies and practices to more efficiently and effectively address current scientific and social needs, as well as increasing public demands for accountability.Through a case study approach, the authors examine an effort undertaken by the National Institute of Allergy & Infectious Diseases (part of the National Institutes of Health, Department of Health & Human Services, United States Government) to develop an evaluation system for its recently restructured HIV/AIDS clinical trials program. The challenges in designing, operationalizing, and managing global clinical trials programs are considered in the context of large scale scientific research initiatives.Through a process of extensive stakeholder input, a framework of success factors was developed that enables both a prospective view of the elements that must be addressed in an evaluation of this research and a current state assessment of the extent to which the goals of the restructuring are understood by stakeholders across the DAIDS clinical research networks.

SUBMITTER: Kagan JM

PROVIDER: S-EPMC2695433 | biostudies-literature | 2009 May

REPOSITORIES: biostudies-literature

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Developing a conceptual framework for an evaluation system for the NIAID HIV/AIDS clinical trials networks.

Kagan Jonathan M JM Kane Mary M Quinlan Kathleen M KM Rosas Scott S Trochim William M K WM

Health research policy and systems 20090521

Globally, health research organizations are called upon to re-examine their policies and practices to more efficiently and effectively address current scientific and social needs, as well as increasing public demands for accountability.Through a case study approach, the authors examine an effort undertaken by the National Institute of Allergy & Infectious Diseases (part of the National Institutes of Health, Department of Health & Human Services, United States Government) to develop an evaluation ...[more]

PMID: 19460164

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Project description:BackgroundPopulation aging is usually associated with increased health care needs. Developing an age-friendly health system with special features, structure, and functions to meet the special needs of older people and improving their health status and quality of life is essential. This study aimed to develop a conceptual framework for an age-friendly health system, which would offer a conceptual basis for providing the best possible care for older people in health system to let them experience a successful, healthy, and active aging.MethodsA scoping review was used to design the conceptual framework based on Arksey and O'Malley's model, including six stages, with the final stage of using expert's opinions to improve and validate the initial framework. The health system model of Van Olmen, was selected as the baseline model for this framework. Then, by reviewing the available evidence, the characteristics of an age-friendly health system were extracted and incorporated in the baseline mode.ResultsUsing the electronic searching, initially 12 316 documents were identified, of which 140 studies were selected and included in this review study. The relevant data were extracted from the 140 studies by two reviewers independently. Most studies were conducted in 2016-2020, and mostly were from United States (33.6%). To have an age-friendly health system, interventions and changes should be performed in functions, components and objectives of health systems. This system aims to provide evidence-based care through trained workforces and involves older people and their families in health policy-makings. Its consequences include better health acre for older people, with fewer healthcare-related harms, greater care satisfaction and increased use of cost-effective health services.ConclusionTo meet the needs of older people, health systems should make interventions in their functions for better performance. In line with these changes, other parts of society should work in harmony and set the health of older people as a top priority to ensure they can have a successful aging.

Project description:BackgroundSince the advent of combination antiretroviral therapy, in developed countries HIV increasingly is perceived as a long-term illness. Individuals may experience health-related consequences of HIV and its associated treatments, a concept that may be termed disability. To date, a comprehensive framework for understanding the health-related consequences experienced by people living with HIV has not been developed. The purpose of this research was to develop a conceptual framework of disability from the perspective of adults living with HIV.MethodsWe conducted four focus groups and 15 face-to-face interviews with 38 adults living with HIV. We asked participants to describe their health-related challenges, their physical, social and psychological areas of life affected, and impact on their overall health. We analyzed data using grounded theory techniques. We also conducted two validity check focus groups with seven returning participants.ResultsDisability was conceptualized by participants as multi-dimensional and episodic characterized by unpredictable periods of wellness and illness. The Episodic Disability Framework consisted of three main components: a) dimensions of disability that included symptoms and impairments, difficulties carrying out day-to-day activities, challenges to social inclusion, and uncertainty that may fluctuate on a daily basis and over the course of living with HIV, b) contextual factors that included extrinsic factors (social support and stigma) and intrinsic factors (living strategies and personal attributes) that may exacerbate or alleviate disability, and c) triggers that initiate momentous or major episodes of disability such as receiving an HIV diagnosis, starting or changing medications, experiencing a serious illness, and suffering a loss of others.ConclusionThe Episodic Disability Framework considers the variable nature of disability, acknowledges uncertainty as a key component, describes contextual factors that influence experiences of disability, and considers life events that may initiate a major or momentous episode. This framework presents a new way to conceptualize disability based on the experience of living with HIV.

Project description:The National AIDS Program in Jordan has faced numerous challenges, including insufficient funding, limited resources, and complexities brought on by refugee influxes. The absence of a reliable HIV/AIDS surveillance system further complicates tracking and responding to the epidemic. This study aimed to evaluate the performance and functionality of the National AIDS Program and the HIV/AIDS surveillance system. A qualitative study was conducted to evaluate the National AIDS Program and the HIV/AIDS Surveillance System in Jordan. The study involved 14 key informants specialized in HIV/AIDS Surveillance Systems. Interviews were guided by an interview guide based on the Updated Centers for Disease Control and Prevention Guidelines for Evaluating Public Health Surveillance Systems. Data analysis was performed through directed content analysis. The Voluntary Counseling and Testing Center in Jordan confronts multiple challenges, including poor infrastructure, limited accessibility, and inadequate facilities. Additionally, there is a lack of effective coordination between the Voluntary Counseling and Testing center and the Chest Diseases and Migrant Health Directorate, particularly regarding testing for Tuberculosis. HIV screening in Jordan is hindered by various factors, including disease sensitivity. Voluntary Counseling and Testing lacks HIV/AIDS specialists AND staff adequate training and fails to adhere to updated treatment guidelines. Persistent deficiencies in human resources, equipment, and training continue to plague the HIV/AIDS Surveillance System. Key informants expressed dissatisfaction with the data's usefulness, citing concerns over poor data quality. The data were seldom used for prioritizing resources, identifying at-risk individuals, assessing HIV/AIDS risk factors, or evaluating prevention and control measures. The National AIDS Program and HIV/AIDS Surveillance System activities in Jordan are unstructured, poorly coordinated, and inefficient. Many gaps related to National AIDS Program and HIV/AIDS Surveillance System performance and data were identified. Recommendations include developing an electronic surveillance system for data collection, notification, and reporting, and building the capacities of HIV/AIDS healthcare providers in screening, diagnosis, and management.

Project description:The increasing emphasis on translational approaches to complex neuropsychiatric and neurodevelopmental conditions research requires scientists from a broad range of disciplines to build dynamic collaborations when formulating hypotheses and framing study designs. The need to integrate the knowledge and perspectives not only from multiple scientific silos but also from the populations impacted by these conditions presents a significant challenge to researchers, particularly for a heterogeneous condition like autism. As one path toward addressing these challenges, we have previously introduced Autism Genetics Outcomes (AutGO), an initiative to support broad stakeholder partnerships and promote a new integrated concept called GO (i.e., research approaches that draw on both genetics and clinical outcomes perspectives). Herein, we developed a workflow for collecting stakeholders' feedback toward the development of a GO hypothesis. AutGO is an evolving initiative, and here we describe how its three essential components (conceptual framework, applicability, and implementation) have been developed. As a proof-of-concept, the AutGO team sought to demonstrate how a GO hypothesis could be developed using a semi-structured literature review workflow. We also developed a prototype from published reports and formulated a GO hypothesis for autism. Rather than seeking community stakeholder input after a research project is conceptualized and designed, the developed conceptual framework demonstrates the feasibility of formulating scientific hypotheses by engaging stakeholders in retrospective semi-structured literature reviews. The presented workflow, prototype, and discussed recommendations will bring awareness in the autism research community about the benefits of applying the GO approach in order to promote translational aspects in genetics research. LAY SUMMARY: We used a community-based engagement approach to develop AutGO (Autism Genetics Outcomes), an initiative to establish stakeholder partnerships and to promote research approaches (we refer to as GO) that draw on both genetics and clinical outcomes perspectives. Specifically, we developed a conceptual framework that includes a literature review process for developing GO hypotheses and stakeholder feedback collection protocol. Our work will bring awareness in the autism research community about the benefits of integrating patient perspectives in genetics research. Autism Res 2020, 13: 1286-1299. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC.

Dataset Information

Developing a conceptual framework for an evaluation system for the NIAID HIV/AIDS clinical trials networks.

Publications

Developing a conceptual framework for an evaluation system for the NIAID HIV/AIDS clinical trials networks.

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