National Center for the Dissemination of Disability Research “Welcome to the New NCDDR” May 31,...

National Center for the Dissemination of Disability Research

“Welcome to the New NCDDR”

May 31, 2006

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NIDRR’s Long-Range Plan and Knowledge Translation ProgramArt Sherwood, PhDEllen Blasiotti

NCDDR Scope of WorkJohn D. Westbrook, PhD

NIDRR Researcher CollaboratorsNCDDR WebsiteJoann Starks

NCDDR Collaborating Partners: An Overview Frank Martin

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NIDRR’s Long-Range Plan and Knowledge Translation Program

• Art Sherwood, PhD• Ellen Blasiotti

National Institute on Disability and Rehabilitation Research

U.S. DEPARTMENT OF EDUCATION

Policy

Practice

Behavior

System Capacity

NIDRR Logic Model: Planning for Research Outcomes

Eliminate disparities between people with disabilities and the general population in:

employment,

participation & community living

and

health and function.

Situation: Significant gaps exist in knowledge, skills, policy, and practice and system capacity that prevent people with disabilities from having equal access to opportunities for employment, health and function, and participation.

Long-term Outcome Arenas –

Changes in Overall

Conditions

Short Term Outcome Arenas – Advances in Understanding,

Knowledge, Skills, and Learning Systems via:

Intermediate Outcome Arenas

–Adoption and Use

of New Knowledge Leading to Changes/

improvements in:

Major Domains

of NIDRRResearch

Contextual Factors: Variable funding; scientific and technological advancements; societal attitudes; economic conditions; changing public policies; coordination and cooperation with other government entities.

Performance Assessment & Outcomes Evaluation

Intended Beneficiaries

Intermediate Beneficiaries

People with

disabilities& familymembers

•Researchers•Clinicians•Service providers•Educators•Policy experts•Federal & non-federal partners

•Industry reps & product

developers•Employers•Media•Consumer advocates•People with disabilities & family members

R&DC-B KT

Discoveries

Interventions, Products, Devices, & Environmental

Adaptations

Theories, Measures, &

Methods

05/05/05

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National Center for the Dissemination of Disability Research

Scope of Work

John D. Westbrook, PhD

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NCDDR Staff Members

Project Director: John D. Westbrook, PhD

Program Associate: Joann Starks

Program Associate: Frank Martin

Program Associate: Kathleen Murphy, PhD

Information Specialist: Lin Harris

Web Administrator: John Middleton

Web Production Artist: Magda Acuña

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Highlights of NCDDR Scope of Work

Focusing on Services that Facilitate

• Building of capacity of NIDRR researchers to negotiate the knowledge translation (KT) process

• Increasing inclusion of NIDRR-sponsored research in systematic reviews

• Improving consumers' access to and use of disability and rehabilitation research

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Implications of New KT Paradigm

Definition of KT

KT is defined as the exchange, synthesis, and ethically-sound application of knowledge — within a complex set of interactions among researchers and users — to accelerate the capture of the benefits of research through improved health, more effective services and products, and a strengthened health care system.

Adapted from the

Canadian Institutes of Health Research (CIHR)

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NCDDR Service Areas• Research Quality

• Development

• Dissemination

• Technical Assistance

• Utilization Effectiveness

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Research Quality Services

• Quality and Alignment of Research Design Research questions(s) and research design

(assessment) Type of new knowledge to be developed

• Standards of Evidence Implications for existing research efforts and

to-be-proposed work

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Research Quality Services (continued)

• Evidence-based Guidelines For use in conducting systematic reviews For use in clarifying roles, responsibilities,

targets of NIDRR researchers

• Research Registration and Reporting Inclusion in registries Change in reporting

• Low Cost/No Cost Modifications

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Development Services

• Reporting Standards Research reports vs. journal articles CONSORT, STARD, QUORUM

• Disability Research Reporting Facilitator Web-based supports/guides

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Dissemination Services

• Information Resources Increase awareness/understanding about KT

• Library of KT Resources and Strategies Web-based resources

• Accessing Systematic Reviews Search assistance

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• Registry of NIDRR-Sponsored Research Heighten profile of NIDRR-supported

research results

• Online Instructional Modules Useful in planning or reviewing new

research designs

• Registry of Syntheses and Evidence-based Systematic Reviews Produced by NIDRR grantees

Dissemination Services (continued)

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• Community of Practice on Research Quality

• Community of Practice on Outreach to Diverse Audiences

• FOCUS Publications

• Web Site

• Webcasts

Dissemination Services (continued)

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Technical Assistance Services

• On-site technical assistance

• Off-site technical assistance

• Toll-free telephone

• Workshops

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• Proposal reviewer resources

Characteristics of research quality

Module

• Systematic review training Campbell Collaboration – electronic and

teleconference

Technical Assistance Services (continued)

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Utilization Effectiveness Services

• Support for Conducting Systematic Reviews and Evidence-based Systems Direct assistance to those conducting

systematic reviews

• Evidence/Product Grading System Disclosure for public dissemination and

utilization

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• Consumer Resources Most effective communication and resource

systems

• Evidence-Based Technology Merging evidence-based information in

technology engineering and transfer

Utilization Effectiveness Services (continued)

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• Knowledge Translation Planning Committee

• Standards and Research Review Board

Consensus Building Strategies with NIDRR Grantees

Joann Starks

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Southwest Educational Development Laboratory (SEDL)

Wesley Hoover, President and CEO

Disability Research To Practice Program

John D. Westbrook, Program Manager

National Center for the Dissemination of

Disability Research (NCDDR)

John D. Westbrook, Director

Task Force onSystematic Review

and Guidelines

Marcel Dijkers, Facilitator

Joann Starks, NCDDR Liaison

Task Force on Knowledge Translation andKnowledge Value Mapping

Juan Rogers, Facilitator

Frank Martin, NCDDR Liaison

Task Force onStandards of Evidence

and Methods

Mark Johnston, Facilitator

John Westbrook, NCDDR Liaison

NCDDR Standards and Research Review Board

John D. Westbrook, Facilitator

Knowledge Translation Planning Committee

John D. Westbrook, Facilitator

Community of Practice on Outreach to Diverse Audiences

Frank Martin, Facilitator

Community of Practice on Research Quality

Joann Starks, Facilitator

National Center for the Dissemination of Disability Research (NCDDR)Organizational Chart for Major Responsibilities

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Knowledge Translation Planning Committee

• Will provide guidance to the NCDDR and NIDRR staff regarding supports and services to strengthen the quality of NIDRR’s KT Program.

• NCDDR staff will work closely with NIDRR-funded KDU and KT projects to incorporate their work into larger scale efforts in guideline production.

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• To help in identifying needs

Suggesting transition resources and supports

Describing information dissemination and utilization conduits appropriate for the development of NIDRR’s KT Program

The KT Planning Committee will draft position statements:

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• John Westbrook, PhD, will serve as facilitator • Electronic discussion list exists • Committee will meet in person annually

• Committee will meet via teleconference monthly/ bimonthly

Logistics

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Katherine BelknapABLEDATAORC Macro

Marianne Farkas, ScD, Innovative KDU for Disability and Professional Organizations and Stakeholders, Boston University/Sargent College

Mark X. Odum, National Rehabilitation Information Center (NARIC), HeiTech Services

Members of KT Planning Committee:

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Joe LaneRERC on Technology Transfer (T2RERC)University at Buffalo, The State University of New York

John H. Stone, PhD, Center for International Rehabilitation Research Information and Exchange (CIRRIE-2), University at Buffalo, The State University of New York

Members (continued)

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Standards and Research Review Board

• Will provide guidance and review in establishing standards of evidence for research

• Uses a consensus-building approach to ensure the rigor and quality of standards as well as the buy-in necessary for their actual use.

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Three Task Forces:

• Standards of Evidence and Methods

• Systematic Review and Guidelines

• Knowledge Translation and Knowledge Value Mapping

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Logistics

• John Westbrook, PhD, will serve as facilitator

• Electronic discussion list will be established

• Board will meet in person annually

• Board will meet periodically via teleconference

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Board Members include NIDRR-funded researchers representing:

• 3 RERCs

• 6 RRTCs

• 2 TBI Model Systems

• 1 each: SCI Model Systems, Burn Model Systems, Field Initiated Projects, Advanced Rehabilitation Training, and ADA/IT Centers

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Members of the Standards and Research Review Board

Matthew H. Bakke, PhD, RERC on Hearing Enhancement, Gallaudet University

Marcel Dijkers, PhD, Mt. Sinai SCI Model System and a Longitudinal Study of Psychosocial Outcomes and Subjective Quality of Life Many Years After Traumatic Brain Injury; Mount Sinai School of Medicine

Charles Drum, PhD, Northwest ADA/IT Center (Disability Business Technical Assistance Center - Region X), Oregon Institute on Disability and Development, Oregon Health & Science University

Steve Gard, PhD, RERC on Prosthetics and Orthotics, Northwestern University

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Members (continued)

Wayne A. Gordon, PhD, RTC on TBI Interventions and New York TBI Model System, Department of Rehabilitation Medicine, Mount Sinai School of Medicine

Allen W. Heinemann, PhD, ABPP, RRTC on Measuring Rehabilitation Outcomes and Effectiveness, Rehabilitation Institute of Chicago, Northwestern University

Mark V. Johnston, PhD, Advanced Rehabilitation Effectiveness Research Training Center on Outcomes and Intervention, and TBI National Data Center, Kessler Medical Rehabilitation Research & Education Corp.

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Members (continued)

Dennis C. Lezotte, PhD, UCHSC Burn Model System Data Coordination Center (BMS/DCC), University of Colorado Health Sciences Center

Craig M. McDonald, MD, RRTC in Neuromuscular Diseases (RRTC/NMD), University of California-Davis

Dennis C. Moore, EdD, RRTC on Substance Abuse, Disability, and Employment, Substance Abuse Resources and Disability Issues (SARDI), Wright State University, School of Medicine

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Juan Rogers, PhD, Director, Research Value Mapping Program, Georgia Institute of Technology; RERCs on Mobile Wireless Technologies for Persons with Disabilities, Wheeled Mobility and Workplace Accommodations

Dave Vandergoot, PhD, RRTC on Improving Employment Outcomes, Hunter College of CUNY

Gregg C. Vanderheiden, PhD, RERC on Telecommunications Access, RERC on Universal Interface and Information Technology Access, University of Wisconsin-Madison, and

Glen W. White, PhD, RRTC on Full Participation in Independent Living, Schiefelbusch Institute for Life Span Studies, University of Kansas

Members (continued)

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Task Force on

Standards of Evidence and Methods

Mark V. Johnston, PhD, FacilitatorJohn Westbrook, PhD, NCDDR Liaison

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• Standards of quality for research addressing each of the three stages of knowledge development identified by NIDRR

• Standards of evidence for the systematic review of disability and rehabilitation research

The task force on standards of evidence and methods will develop and present to the Board draft consensus/position statements regarding:

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Activity 1.1 Establish collaborative mechanisms for developing standards of evidence and other supports for developing evidence-based knowledge.

Activity 1.2: Identify existing standards of evidence and assess their applicability to NIDRR-sponsored research.

Activity 1.3: Facilitate the development and refinement of standards of evidence for NIDRR-sponsored research.

The task force on standards and methods will address:

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Task Force on

Systematic Review and Guidelines

Marcel Dijkers, PhD, FacilitatorJoann Starks, NCDDR Liaison

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• Develop and present to the Board draft consensus/position statements regarding recommended strategies for conducting systematic reviews in disability and rehabilitation research

• Review examples and components of guidelines produced in disability-related areas in order to suggest structures and components for developing additional guidelines derived from disability and rehabilitation research.

The task force on systematic review and guidelines will:

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Activity 4.1: Facilitate the identification, development, and dissemination of guidelines for disability and rehabilitation practices and programs drawn from evidence produced through systematic reviews.

The task force on systematic review and guidelines will address:

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Task Force on

Knowledge Translation and Knowledge Value Mapping

Juan Rogers, PhD, FacilitatorFrank Martin, NCDDR Liaison

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• KVM in relation to moving scientific evidence into policy and practice

• Use of the concept of knowledge value communities (KVC) in dissemination and utilization of systematic reviews

The task force on knowledge translation (KT) and knowledge value mapping (KVM) will develop and present to the Board draft consensus/position statements and recommendations regarding:

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• Considerations of “driving” and “restraining” forces in moving NIDRR-sponsored research results into public policy

• Needs for evidence grading to be responsive to NIDRR’s desire to address end-users with limited scientific training

• Knowledge mapping standards appropriate for each of NIDRR’s targeted stages of knowledge development

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NCDDR Web Site and Resource Highlights

Joann Starks

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www.ncddr.org

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• Library of Knowledge Translation Resources and Strategies Multi-media Evidence-based materials NCDDR FOCUS/Updates

NCDDR will develop and maintain several Web-based resources and services:

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• Registry of Systematic Reviews Searchable NIDRR researcher authorships Summaries, digests, reports also included

• Registry of NIDRR-Sponsored Research NIDRR Research Studies Searchable by relevant components: for

example: research questions, research design, sample characteristics

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• Evidence-based Registries and Databases Portal to variety of resources

• Communities of Practice Forums, Online meetings Teleconferences and Webcast events Archives

• Needs Sensing Activities and Reports Restricted access as needed Data gathering for specific audiences

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• Research Report Facilitator Based on type of research design,

suggestion for report components/content

• Tools and Guides Research Instrumentation Guides and Guidelines

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• Webcasts Calendar Archives

• Workshops Registration Archives

• Technical Assistance Services Request Online TA and Training Events

NCDDR Collaborating Partners: An Overview

Frank Martin

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Campbell Collaboration (C2)

• What is Campbell Collaboration?

• C2 Goals and Activities

• Anticipated Partnership Roles & Contribution Disability Research Collaborating Group Online training Onsite training Involve NIDRR researchers in Campbell reviews

• Key Personnel Brian Cobb, PhD Chad Nye, PhD

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Cochrane Collaboration• What is Cochrane Collaboration?

• Cochrane Activities - Cochrane Library

• Anticipated Partnership Roles & Contribution

Disability & Rehabilitation Field Group

Involve NIDRR investigators in Cochrane reviews

Training for Health and Function research area

• Key Personnel Rob de Bie, PhD Kay Dickersin, PhD Lisa Bero, PhD

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National Guideline Clearinghouse• Rationale for the NGC

• Role of Evidence-based Practice Guidelines

• Anticipated Partnership Roles & Contribution

Registry development

Expertise on KT and guideline development

• Key Personnel

Mary P. Nix

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National Rehabilitation Information Center

• NARIC Structure and Function

• Anticipated Partnership Roles & Contribution

Evidence grading system for products

• Key Personnel

Mark Odum

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Independent Living Research Utilization

• What is ILRU?

• ILRU and the Disability Community

• Anticipated Partnership Roles & Contribution

Webcasts

• Key Personnel

Lex Frieden

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RTC on Traumatic Brain Injury Interventions

• RTC’s Scope of Work

• Systematic Review Project

• Anticipated Partnership Roles & Contribution

Identify research design modifications

• Key Personnel

Wayne Gordon, PhD

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Pimjai Sudsawad, PhD

• Mary E. Switzer Fellow

• Assistant Professor, University of Wisconsin, Madison

• Research Focus: Knowledge Utilization Process and Strategies

Social Validation Model

• Anticipated Partnership Roles & Contribution

Identify and test knowledge dissemination and utilization strategies

Effectiveness of plain language summaries

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Ralf Schlosser, PhD

• Mary E. Switzer Fellow

• Associate Professor, Northeastern University, Boston

• Augmentative and Alternative Communication

Systematic review experience

Conceptual framework for systematic review

• Anticipated Partnership Roles & Contribution

Translating the EB on assistive/adaptive devices

Bridging the gap: Systematic reviews and rehabilitation engineering research