Mary Kane

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

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.

Bringing voice in policy building: A cross-population multi-stakeholder conceptual model for management of acute unscheduled care in the United States using group concept mapping

Purpose The purpose of this paper is to describe the use of group concept mapping (GCM) as a tool for developing a conceptual model of an episode of acute, unscheduled care from illness or injury to outcomes such as recovery, death and chronic illness. Design/methodology/approach After generating a literature review drafting an initial conceptual model, GCM software (CS Global MAXTM) is used to organize and identify strengths and directionality between concepts generated through feedback about the model from several stakeholder groups: acute care and non-acute care providers, patients, payers and policymakers. Through online and in-person population-specific focus groups, the GCM approach seeks feedback, assigned relationships and articulated priorities from participants to produce an output map that described overarching concepts and relationships within and across subsamples. Findings A clustered concept map made up of relational data points that produced a taxonomy of feedback was used to update the model for use in soliciting additional feedback from two technical expert panels (TEPs), and finally, a public comment exercise was performed. The results were a stakeholder-informed improved model for an acute care episode, identified factors that influence process and outcomes, and policy recommendations, which were delivered to the Department of Health and Human Servicess (DHHS) Assistant Secretary for Preparedness and Response. Practical implications This study provides an example of the value of cross-population multi-stakeholder input to increase voice in shared problem health stakeholder groups. Originality/value This paper provides GCM results and a visual analysis of the relational characteristics both within and across sub-populations involved in the study. It also provides an assessment of observational key factors supporting how different stakeholder voices can be integrated to inform model development and policy recommendations.