Broadly Engaged Team Science in Clinical and Translational Research

1. Front Matter

   Pages i-xv

   PDF

2. Broadly Engaged Team Science at Tufts Clinical and Translational Science Institute

   • Alice M. Rushforth, Harry P. Selker

   Pages 1-7

3. Transforming Research with Broad Engagement

   1. Front Matter

      Pages 9-9

      PDF

   2. The Transformative Power of Broadly Engaged Team Science: A Mother’s Quest to Understand PXE

      • Sharon F. Terry

      Pages 11-18

   3. Broadly Engaged Team Science in Neonatal Research

      • Jonathan M. Davis

      Pages 19-25

   4. The Changing Role of Patient Advocates in Cancer Clinical Trials

      • Susan K. Parsons

      Pages 27-32

   5. National Kidney Foundation (NKF) Patient Network

      • Silvia Ferrè, Silvia Titan, Lesley A. Inker

      Pages 33-45

   6. Broadly Engaged Team Science Comes to Life in a Design Lab

      • Marisha E. Palm, Harry P. Selker, Theodora Cohen, Kenneth I. Kaitin, Kay Larholt, Mark Trusheim et al.

      Pages 47-53

   7. Tufts Center for the Study of Drug Development Employs Broadly Engaged Team Science to Explore the Challenges of Pharmaceutical Research and Development

      • Kenneth I. Kaitin, Kenneth Getz

      Pages 55-63

4. Integrating Communities and Stakeholders into Broadly Engaged Team Science

   1. Front Matter

      Pages 65-65

      PDF

   2. Social Movements and Stakeholder Engagement

      • Peter Levine

      Pages 67-74

   3. A Basic Scientist’s Journey: Engaging Stakeholders Through Civic Science

      • Jonathan A. Garlick

      Pages 75-84

   4. Lessons in Public Involvement from Across the Pond

      • Marisha E. Palm, Tina Coldham, David Evans

      Pages 85-96

   5. Leveling the Playing Field for Community Stakeholders: Examining Practices to Improve Engagement and Address Power Dynamics

      • Sara Folta, Linda B. Hudson, Beverly Cohen, Apolo Cátala

      Pages 97-105

   6. Conceptualizing and Developing a Theory of Stakeholder-Driven Community Diffusion

      • Erin Hennessy, Christina D. Economos

      Pages 107-117

   7. Monitoring and Evaluation of Stakeholder Engagement in Health Care Research

      • Thomas W. Concannon, Marisha E. Palm

      Pages 119-125

5. Applying Broadly Engaged Team Science: Case Studies

   1. Front Matter

      Pages 127-127

      PDF

   2. Insiders and Outsiders: A Case Study of Fostering Research Partnerships Between Academic Health Centers and Corrections Institutions

      • Alysse G. Wurcel, Julia Zubiago, Deirdre J. Burke, Karen M. Freund, Stephenie Lemon, Curt Beckwith et al.

      Pages 129-137

   3. Responding to the Community: HOPE (Healthy Outcomes from Positive Experiences)

      • Robert Sege, Dina Burstein, Chloe Yang

      Pages 139-148

   4. Students as Key Collaborators in Tackling Early Stage Research Ideas

      • Alissa Dangel, Mallory Whalen

      Pages 149-156

Despite the large U.S. investment in health science, and the vast and growing body of peer-reviewed research findings it has produced, a compelling body of evidence suggests that research too often has been slow, inefficient, and fallen short of desired impacts on health. A key question is how research might be changed to be more innovative, less wasteful, and more responsive to unmet health needs. 

 

One emerging response within clinical and translational science is to advance an approach that attempts to close the gap between research scientists and key stakeholders; the individuals and groups responsible for or affected by health-related decisions. Broadly engaged team science promises to support this aim by transforming the gold standard, multi-disciplinary team science, to include key stakeholders in activities across the research spectrum. These new roles and responsibilities range from generating research questions to implementing research projects,to aiding in the translation of discoveries from the laboratory to the community. A transition to broadly engaged team science reflects the idea that inclusivity and a diversity of perspectives are necessary to achieving progress in addressing complex health issues while representing a new benchmark for ethical research practice. 

 

This is one of the first collections of papers describing how clinical and translational science researchers are defining and implementing new research practices, and the successes and challenges involved. This book represents a first and critical step towards organizing knowledge of broadly engaged team science and advancing the development of evidence-based practices. Written in an accessible style, this book is intended to highlight the breadth of broadly engaged team science within one community, motivate researchers and stakeholders to build inclusive teams, bring rigor to often informal stakeholder engagement research practices and encourage people to think more broadly about the development of scientific knowledge. It includes examples of multi-disciplinary, broadly engaged team science projects, the perspectives of academic leaders about the changes needed to encourage scientists to conduct broadly engaged team science, and a resource directory.

• diversity
• inclusion
• research methods
• research policy
• inequality
• sustainability
• patient care
• basic research
• case studies
• scientific partnership
• health policy
• social sciences
• team building
• best practices
• policy implementation
• evidence-based
• patient network
• minority populations
• advocacy
• social movements

• Tufts Medical Center, Boston, USA

  Debra Lerner, Marisha E. Palm

• RAND Corporation, Boston, USA

  Thomas W. Concannon

Debra Lerner, MSc, PhD, is Associate Director of Organizational Impact for Tufts Clinical and Translational Science Institute (CTSI), Director and founder of the Program on Health, Work and Productivity at Tufts Medical Center, and Professor in the Departments of Medicine and Psychiatry of Tufts School of Medicine and Tufts Graduate School of Biomedical Science. She has dedicated her career to reducing the human and economic burden of illness and disability and translating research results into evidence-based workplace policies and practices that enable all adults to remain productive throughout their lives. She is a national thought leader on health and work productivity improvement as well as workplace mental health. She is an expert survey researcher whose questionnaires, including the Work Limitations Questionnaire, are used worldwide.
Dr. Lerner has authored over 80 peer reviewed publications, is the recipient of numerous research grants and contracts, and received the prestigious Mark Dundon Research Award from the Health Enhancement Research Organization (HERO) and President’s Award from the Institute of Health and Productivity Management (IHPM). She has consulted on employee health and productivity improvement for many organizations, including the US Veterans Benefits Administration, Social Security Administration Disability Programs, the Assistant Secretary’s Office for Planning and Evaluation within the Department of Health and Human Services, One Mind, the World Economic Forum, and many private-sector health insurers and employers. Dr. Lerner serves on the board of directors of The Health Project, which awards the prestigious C. Everett Koop award to employers that have demonstrated excellence in employee health promotion and disease prevention and is Board Chair of the Center for Workforce Health and Performance.

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