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Slide 1

Presented By: Amy Bonoff
Training and Support for Patients and Consumers Engaged in Research

Slide 2

Training & Support

  • Training and continued learning opportunities are a key element for success
  • Methods to support patient and consumer involvement are evolving
    • NBCC Project LEAD
    • FDA Patient Representative Program
    • Congressionally Directed Medical Research Program Consumer Representative Program
    • Consumers United for Evidence-Based Healthcare

Slide 3

Principles for Training Programs

  • Set appropriate goals
  • Target training for the specific project and roles
    • The FDA provides training on regulatory processes as it is specific to the activity
    • Cochrane Consumer Network provides training manuals for preparing plain language summaries
  • Take into account level of knowledge & experience
  • Understand motivations of learners
  • Provide on-going and mixed training methods
    • Lectures, small group breakouts, problem solving, & case discussions

Slide 4

Principles for Training Programs

  • Employ established principles of adult learning
    • (e.g., repetition, use of plain language)
  • Identify engaging and skilled faculty members for training courses
  • Ensure that training is evaluated and continuously updated
  • Advise on applied learning
  • Provide information in small quantities in order to avoid overwhelming the individual.

Slide 5

Content for Training

  • Content should be relevant to the project at hand
  • Key content areas to consider include:
    • Basics of research
    • Context of research organization
    • Applied training in public speaking
    • Training in critical thinking
    • Training in how to negotiate

Slide 6

Additional Support Activities

  • In addition to training opportunities, support offered includes:
    • Establish mentorship programs
    • Foster ongoing engagement (updates on research, newsletters, information on opportunities for involvement)
    • Provide networking opportunities
    • Reduce barriers to participation

Slide 7

Advocacy Training: The NBCCProject LEAD® Story

Slide 8

What is Project LEAD®?

Leadership Education Advocacy Development

  • Science training for consumer advocates: learning concepts and language of science to influence research and public policy
  • Students paired with a mentors to help during the teaching as well as guide in their advocacy careers
  • Collaborative: designed by NBCC with scientists, academics, and consumers
  • Select participants: renowned faculty and committed students
  • Adult learning: lectures, study group sessions, case studies, role play, homework, personal action plan, and continuing education
  • Held several times a year in different locations; different levels and foci for variety of courses

Slide 9

Why Project LEAD® is Important for Advocates

  • Enables advocates to play integral role in breast cancer decision-making in research, policy, healthcare systems
  • Gives advocates tools to critically appraise research proposals and scientific reporting
  • Builds bridges between the consumer advocacy and scientific communities
  • Builds credibility for the consumer advocacy community

Slide 10

Center for NBCC Advocacy Training

  • Created in 2008
  • To consolidate, expand and enhance the range of NBCC research advocacy and public policy training
  • Includes:
    • Full range of Project LEAD domestic and international science and quality care courses
    • Annual Advocacy Training Conference
    • Team Leader training
    • Emerging Leaders
    • Continuing Education – web community, advanced sessions
    • Mentoring
  • Over 2000 graduates, 74 courses – since 1995

Slide 11

Types of Project LEAD Courses

  • Project LEAD® Institute- an intensive science and research methodology course to prepare advocates to serve on breast cancer decision-making bodies and to critically analyze information (1995)
  • Clinical Trials Project LEAD® - advanced course to improve design, implementation, outcomes of clinical trials (2001)
  • Quality Care Project LEAD® - applies NBCC’s core values towards creating systems-wide improvements in quality breast cancer care. (2004)
  • International Project LEAD® - bringing science and clinical trials training to international advocacy community to support advocate/researcher collaborations (2004)

Slide 12

Types of Project LEAD® Courses

  • Project LEAD® Workshop – introductory level course on basic scientific concepts and language; critical skill-building to understand scientific research reported in the media (2008)
  • Over 2000 graduates, 74 courses – since 1995

Slide 13

Identifying Need for Educated Consumers

  • Dept. of Defense Breast Cancer Research Program
    • NBCC required that educated consumers work as peers with scientists from start of DOD BCRP - as co-chairs, reviewers, etc
    • Identified need to train advocates in concepts and language of science
  • NBCC principles align with Project LEAD:
    • Evidence-based health care
    • Consumer perspective to shape research agenda
    • Keep efforts focused on mission to end breast cancer
  • Health care reform legislation -
    • NBCC helped assure “educated consumer involvement on committees” language added to and remained in bill

Slide 14

Educational Principles of Project LEAD®

  • Set bar high – for student selection, curriculum
  • Belief in adult ability to learn complex scientific concepts and critical appraisal skills
  • Ground program in adult learning principles:
    • Repetition, small study groups, safe learning environment for weakest to learn most, risk zone theory, graduate action plan
  • Offer continuing education, mentoring

Slide 15

Faculty Criteria

  • Faculty
    • Outstanding teaching skills – key requirement
    • Ability/willingness to commit significant time
  • Commitment to Project LEAD’s goal of training educated consumers to sit at all breast cancer decision-making tables
  • Continue to work with advocates and staff to update and refine curriculum

Slide 16


  • Basic Science
  • Epidemiology
  • Clinical Medicine
  • Advocacy Development

Slide 17

Curriculum: Advocacy Development

  • Overview of research process
  • Critical appraisal skills
    • Centrality of evidence-based healthcare
    • Grant review process
    • Influence strategies
    • Role playing in advocacy situations
    • Advocacy opportunities
    • Graduate Action Plan with mentors

Slide 18


  • Research advocacy continues to grow and advance
  • Training and support is a critical component for meaningful engagement
  • Organizations with training programs in place are valuable resources for researchers
    • Project LEAD
    • Research Advocacy Network
    • CDMRP
    • Cochrane Consumers Network
    • FDA Patient Representative Program

Slide 19


  • Consumers United for Evidence-Based Healthcare (CUE)
    • Online Course: Understanding Evidence-based Healthcare: A foundation for action
  • Cochrane Consumer Network :
    • Consumer guides to commenting on Systematic reviews
    • Consumer guides to writing Plain Language summaries
    • Glossary of terms
  • Research Advocacy Network:
    • Roadmap to Research Advocacy
    • Advocate Institute
  • Food and Drug Administration Patient Advocacy Program
    • Role of Patient Advocates in FDA Advisory Committees
    • Overview of the FDA
    • Webinar training