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Research Questions

  1. What topics and questions have been addressed in WTC health-related research?
  2. To what extent is WTC health-related research translational?
  3. What are the facilitators of and barriers to translation of WTC health-related research?
  4. To what extent has WTC health-related research had impact?

The World Trade Center (WTC) Health Program (hereafter Program) provides medical monitoring and treatment for its Members: the responders and survivors who were at the WTC and related sites or located within the New York City disaster area during and after the terrorist attacks of September 11, 2001. Scientific research supported by the Program provides an evidence base for the health monitoring and clinical care of Members.

In this report, the authors describe the findings and recommendations of a four-year study of the Program's research portfolio and its translational impact. They present results from a mixed methods assessment that integrates (1) a scoping review of nearly 1,000 peer-reviewed publications and thousands of pages of grey literature that reference research related to the health effects of 9/11, (2) stakeholder perspectives gathered through focus groups and interviews, and (3) a review of Program documentation.

The report is intended to guide planning by Program leadership as it aims to maximize the impacts of Program research and achieve its goal of translating research into care for those affected by the attacks on 9/11.

Key Findings

  • WTC health-related research addresses a wide variety of health conditions and is balanced across Member populations.
  • There is a high concentration of research that addresses fundamental questions about the health effects of 9/11 and a lower concentration of research on health care interventions for affected populations.
  • Facilitators of research translation include a focused mission to improve care through research; research infrastructure, such as the colocation of researchers and clinicians at Clinical Centers of Excellence and the collection, management, and analysis of data by the WTC Data Centers and WTC Health Registry; and the communication and dissemination of findings. Barriers to research translation include methodological limitations, fragmentation of the health care system, funding constraints, variable definitions of translation, and misaligned expectations about research.
  • Program leaders, researchers, clinicians, and Members understand the fundamentals of translation and can describe, in their own words, how WTC health-related research is used. However, almost all stakeholders struggled to give a comprehensive definition of "translation."
  • The Program has a strong record of documenting and disseminating Program-funded research, but the range of stakeholder preferences for receiving information about WTC health-related research is broad and presents challenges.
  • Program research is used in decisions about clinical care, planning, and policy.
  • Stakeholders want to know how they can contribute to maximizing the impacts of research. Some stakeholders may need information and guidance to support their involvement in Program planning, policy, and research.

Recommendations

  • To ensure the Program is able to maintain a balanced portfolio in terms of topics and populations, the Program can build on and further develop existing research infrastructure and processes for conducting timely, objective, and continuous reviews of the Program's research portfolio.
  • To come to a shared understanding of "translation" and align expectations about what such research can achieve for Members, the Program can gather input from stakeholders on a novel translational research framework proposed by the National Institute of Environmental Health Sciences (NIEHS).
  • To guide a more systematic approach to activities of the research program, the Program can pilot the NIEHS translational framework in four key areas: research planning, monitoring, evaluation, and communication about research impacts.
  • To be responsive to stakeholders' interest in contributing to maximizing the impacts of research, the Program can implement structured processes for stakeholder engagement in program planning, policy, and research activities.

Table of Contents

  • Chapter One

    Introduction

  • Chapter Two

    Impacts of World Trade Center Health-Related Research

  • Chapter Three

    Facilitators of and Barriers to Translation of World Trade Center Health-Related Research

  • Chapter Four

    Synthesis of Findings and Recommendations

  • Appendix A

    About the World Trade Center Health Program

  • Appendix B

    Research Questions

  • Appendix C

    Methods

  • Appendix D

    Scoping Review: Search Strategy for Peer-Reviewed Publications

  • Appendix E

    Scoping Review: Data Abstraction Topics

  • Appendix F

    Scoping Review: Included Articles

  • Appendix G

    Qualitative Analysis: Codebooks

  • Appendix H

    Qualitative Analysis: Search Strategy for Gray Literature

  • Appendix I

    Qualitative Analysis: Stakeholder Views on Future Research Priorities

Research conducted by

This research was funded by the National Institute for Occupational Safety and Health and conducted by the Community Health and Environmental Policy Program within RAND Social and Economic Well-Being.

This report is part of the RAND Corporation Research report series. RAND reports present research findings and objective analysis that address the challenges facing the public and private sectors. All RAND reports undergo rigorous peer review to ensure high standards for research quality and objectivity.

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