National Center for the Dissemination of Disability Research

1. National Center for the Dissemination of Disability Research “Welcome to the New NCDDR” May 31, 2006

2. NIDRR’s Long-Range Plan and Knowledge Translation Program Art Sherwood, PhD Ellen Blasiotti NCDDR Scope of Work John D. Westbrook, PhD NIDRR Researcher Collaborators NCDDR Website Joann Starks NCDDR Collaborating Partners: An Overview Frank Martin

3. 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

4. Technology major life domains People with disabilities & family members Participation/ Community Employment Living Health/Function Demographics 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. NIDRR Logic Model: Planning for Research Outcomes Short Term Outcome Arenas – Advances in Understanding, Knowledge, Skills, and Learning Systems via: Intermediate Beneficiaries Intermediate Outcome Arenas – Adoption and Use of New Knowledge Leading to Changes/ improvements in: Intended Beneficiaries Long-term Outcome Arenas – Changes in Overall Conditions Major Domains of NIDRR Research R&D C-B KT Eliminate disparities between people with disabilities and the general population in: • employment, • participation & community living and • health and function. • Researchers • Clinicians • Service providers • Educators • Policy experts • Federal & non- • federal partners • Industry reps & product developers • Employers • Media • Consumer advocates • People with disabilities & family members Research & Development Policy Discoveries Practice Capacity Building Knowledge Translation Theories, Measures, & Methods Behavior Interventions, Products, Devices, & Environmental Adaptations System Capacity Performance Assessment & Outcomes Evaluation 05/05/05 Contextual Factors: Variable funding; scientific and technological advancements; societal attitudes; economic conditions; changing public policies; coordination and cooperation with other government entities.

5. National Center for the Dissemination of Disability Research Scope of Work John D. Westbrook, PhD

6. 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

7. 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

8. 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)

9. NCDDR Service Areas • Research Quality • Development • Dissemination • Technical Assistance • Utilization Effectiveness

10. 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

11. 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

12. Development Services • Reporting Standards • Research reports vs. journal articles • CONSORT, STARD, QUORUM • Disability Research Reporting Facilitator • Web-based supports/guides

13. Dissemination Services • Information Resources • Increase awareness/understanding about KT • Library of KT Resources and Strategies • Web-based resources • Accessing Systematic Reviews • Search assistance

14. Dissemination Services (continued) • 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

15. Dissemination Services (continued) • Community of Practice on Research Quality • Community of Practice on Outreach to Diverse Audiences • FOCUS Publications • Web Site • Webcasts

16. Technical Assistance Services • On-site technical assistance • Off-site technical assistance • Toll-free telephone • Workshops

17. Technical Assistance Services (continued) • Proposal reviewer resources • Characteristics of research quality • Module • Systematic review training • Campbell Collaboration – electronic and teleconference

18. 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

19. Utilization Effectiveness Services (continued) • Consumer Resources • Most effective communication and resource systems • Evidence-Based Technology • Merging evidence-based information in technology engineering and transfer

20. Consensus Building Strategies with NIDRR Grantees • Knowledge Translation Planning Committee • Standards and Research Review Board Joann Starks

21. National Center for the Dissemination of Disability Research (NCDDR) John D. Westbrook, Director Community of Practice on Research Quality Joann Starks, Facilitator Community of Practice on Outreach to Diverse Audiences Frank Martin, Facilitator National Center for the Dissemination of Disability Research (NCDDR) Organizational Chart for Major Responsibilities Southwest Educational Development Laboratory (SEDL) Wesley Hoover, President and CEO Disability Research To Practice Program John D. Westbrook, Program Manager NCDDR Standards and Research Review Board John D. Westbrook, Facilitator Knowledge Translation Planning Committee John D. Westbrook, Facilitator Task Force on Standards of Evidence and Methods Mark Johnston, Facilitator John Westbrook, NCDDR Liaison Task Force on Systematic Review and Guidelines Marcel Dijkers, Facilitator Joann Starks, NCDDR Liaison Task Force on Knowledge Translation and Knowledge Value Mapping Juan Rogers, Facilitator Frank Martin, NCDDR Liaison

22. 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.

23. The KT Planning Committee will draft position statements: • 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

24. Logistics • John Westbrook, PhD, will serve as facilitator • Electronic discussion list exists • Committee will meet in person annually • Committee will meet via teleconference monthly/ bimonthly

25. Members of KT Planning Committee: Katherine Belknap ABLEDATA ORC 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

26. Members (continued) • Joe Lane • RERC 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

27. 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.

28. Three Task Forces: • Standards of Evidence and Methods • Systematic Review and Guidelines • Knowledge Translation and Knowledge Value Mapping

29. 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

30. 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

31. 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

32. 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.

33. 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

34. Members (continued) 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

35. Task Force on Standards of Evidence and Methods Mark V. Johnston, PhD, Facilitator John Westbrook, PhD, NCDDR Liaison

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

37. The task force on standards and methods will address: 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.

38. Task Force on Systematic Review and Guidelines Marcel Dijkers, PhD, Facilitator Joann Starks, NCDDR Liaison

39. The task force on systematic review and guidelines will: • 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.

40. The task force on systematic review and guidelines will address: 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.

41. Task Force on Knowledge Translation and Knowledge Value Mapping Juan Rogers, PhD, Facilitator Frank Martin, NCDDR Liaison

42. 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: • 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

43. 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

44. NCDDR Web Site and Resource Highlights Joann Starks

45. www.ncddr.org

46. NCDDR will develop and maintain several Web-based resources and services: • Library of Knowledge Translation Resources and Strategies • Multi-media • Evidence-based materials • NCDDR FOCUS/Updates

47. 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

48. 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

49. Research Report Facilitator • Based on type of research design, suggestion for report components/content • Tools and Guides • Research Instrumentation • Guides and Guidelines

50. Webcasts • Calendar • Archives • Workshops • Registration • Archives • Technical Assistance Services • Request • Online TA and Training Events