Broadly Engaged Team Science in Clinical and Translational Research

Acknowledgments
About the Book
Contents
List of Figures
Chapter 1: Broadly Engaged Team Science at Tufts Clinical and Translational Science Institute
	References
Part I: Transforming Research with Broad Engagement
	Chapter 2: The Transformative Power of Broadly Engaged Team Science: A Mother’s Quest to Understand PXE
		The Formation of PXE International
		Collaborating with Patients Leads to the First Biospecimen Repository and Disease Registry Established by a Patient Advocacy Organization
		Research Sparks Additional Collaborations, New Understanding, and Discovery of the PXE Gene
		Expanding PXE International’s Research Collaborations
		Transforming Systems Requires Transforming Ourselves
		References
	Chapter 3: Broadly Engaged Team Science in Neonatal Research
		Formation of the International Neonatal Consortium (INC)
		Initial Cross-Cutting Themes of INC
		Key Deliverables of INC
		INC Is Advancing Neonatal Regulatory Science
		References
	Chapter 4: The Changing Role of Patient Advocates in Cancer Clinical Trials
		A Brief History of Cancer Clinical Trials
		Cancer Patient Advocacy Has Taken Many Forms
		History of Patient Advocates in Clinical Trials
		Incorporating Patient Advocates into Designing and Implementing Clinical Trials
		The Future of Patient Advocacy in Cancer Clinical Trials
		References
	Chapter 5: National Kidney Foundation (NKF) Patient Network
		The Challenges in Chronic Kidney Disease (CKD) Clinical Management
		The NKF Patient Network—Vision, Goals, and Architecture
		NKF Patient Network—Stakeholders
		NKF Patient Network—Future Stakeholders
		NKF Patient Network—Governance
		NKF Patient Network Model Will be Useful for Other National Registries
		References
	Chapter 6: Broadly Engaged Team Science Comes to Life in a Design Lab
		Design Lab Methodology
		Design Lab Evolution 2010–2020
		Design Lab Value
		Design Lab Methods and Tools Continue to Evolve
		References
	Chapter 7: Tufts Center for the Study of Drug Development Employs Broadly Engaged Team Science to Explore the Challenges of Pharmaceutical Research and Development
		The Current Drug Development Landscape
		Tufts CSDD’s Multi-Stakeholder Working Groups and Engaged Team Science
		Specific Examples of Tufts CSDD Multi-Stakeholder Working Groups
			“Examining Clinical Protocol Complexity in Drug Development”
			“Evaluating Barriers to the Development of New Treatments for Lupus”
			“Assessing Pharma Industry’s Adoption of Machine Learning and Artificial Intelligence”
		Challenges and Limitations of Tufts CSDD’s Multi-Stakeholder Working Groups and the Engaged Team Science Approach
		Tufts CSDD’s Multi-Stakeholder Working Group Approach Could Lead to New Drug Development Practices and Regulatory Standards
		References
Part II: Integrating Communities and Stakeholders into Broadly Engaged Team Science
	Chapter 8: Social Movements and Stakeholder Engagement
		How Science and Health Professionals Define “Engagement”
		Health-Related Social Movements
		How Movements Work
		How Institutions and Professionals Should View Movements
		Building Better Relationships Between Science and Social Movements
		References
	Chapter 9: A Basic Scientist’s Journey: Engaging Stakeholders Through Civic Science
		Learning that External Stakeholders Are Essential to a Basic Scientist
		Growing our Broadly Engaged Team Science Approach
		Learning the Importance of Adopting New Communication Practices
		A Path Forward out of the Silos: A Civic Science Framework that Supports Broadly Engaged Team Science
		Looking Towards the Future of Civic Science as a Transformational Force in Science
		References
	Chapter 10: Lessons in Public Involvement from Across the Pond
		Public Involvement in Health Research in England
		The Role and Evolution of INVOLVE
		Public Involvement Resources
		Compare and Contrast with Public Involvement in the US
		What Can the US Learn from England?
		What Can We Learn Together?
		Approaches to Involving the Public in Health Research Continue to Evolve
		References
	Chapter 11: Leveling the Playing Field for Community Stakeholders: Examining Practices to Improve Engagement and Address Power Dynamics
		Our Experience
		Promising Practices for Improving Community Engagement in Team Science
		Approaches to Address the Equitable Distribution of Decision-Making Power in Team Science
		Community Stakeholder Perspective
		Conclusion
		References
	Chapter 12: Conceptualizing and Developing a Theory of Stakeholder-Driven Community Diffusion
		A Systems Mapping Approach
		The Stakeholder-Driven Community Diffusion (SDCD) Theory
		Development and Testing of the SDCD Theory
			Creating and Testing the SDCD Survey Tools and Mechanistic Model
		Ongoing Research and Evaluation Efforts to Test and Refine SDCD Theory
		Connecting Upstream Influence to Downstream Outcomes
		References
	Chapter 13: Monitoring and Evaluation of Stakeholder Engagement in Health Care Research
		Monitoring and Evaluation Are Anchored in Engagement Aims
		Monitoring and Evaluating Engagement
		Common Monitoring and Evaluation Topics
		Developing an Engagement Monitoring and Evaluation Plan
		Metrics and Measures Will Continue to Evolve
		References
Part III: Applying Broadly Engaged Team Science: Case Studies
	Chapter 14: Insiders and Outsiders: A Case Study of Fostering Research Partnerships Between Academic Health Centers and Corrections Institutions
		Correctional Health Care: A Brief History
		Developing a Partnership Between Tufts Medical Center and the Middlesex Sheriff’s Office
		Lessons Learned
		Ongoing and Future Projects
		References
	Chapter 15: Responding to the Community: HOPE (Healthy Outcomes from Positive Experiences)
		The Complexities of Screening for Childhood Abuse, Neglect, and Dysfunction
		Forming Research Ideas Based on Stakeholder Engagement
		Stakeholder Engagement in Strategic Planning
		Family-Centered Process Evaluation to Shape HOPE Project and Resources
		Gathering Stakeholder Input from Public Health and Epidemiology Experts
		Expanding Stakeholder Engagement for the Dissemination of HOPE
		Continued Engagement with Families and Communities
		References
	Chapter 16: Students as Key Collaborators in Tackling Early Stage Research Ideas
		The Clinical Challenge: Prevention of Head Entrapment for Extremely Preterm Breech Deliveries
		Establishing a Non-traditional Multi-stakeholder Team
		Research and Development of a Medical Device Prototype
		Student-Led Team Science Is a Valuable Resource for Solving Real World Clinical Problems
		References
	Chapter 17: Engaging Stakeholders to Decrease Study Start-Up Delays
		Identifying the Problem and Engaging the Team
		Understanding the Related Processes and Determining Underlying Causes of Study Start-up Delays
		Developing and Implementing Changes: The Study Start-Up Toolkit
		Measuring Progress
		Strengths and Limitations
		Next Steps and Lessons Learned
		References
	Chapter 18: Health Literacy and Broadly Engaged Team Science: How One Study Team Used Plain Language Principles to Share Findings with Affected Communities
		Environmental Health Literacy
		Plain Language Principles
		Health and Literacy Partnerships
		Successes and Challenges
		Recommendations for Communicating Complex Research-related Information
		References
	Chapter 19: Utilizing Patient Navigators to Promote Equitable and Accountable Research
		Integrating Patient Navigators into Research Teams
		Patient Navigators Expand Research Participation
		Patient Navigators Enhance the Ability of Research Teams to Address Diverse Issues
		Preparing and Supporting Patient Navigators in Research
		References
	Chapter 20: Asian American Research in the Post-Atlanta Era: Driving Community-Engaged Research That Is More Meaningful, Responsive, and Actionable for Local Communities
		Challenges Facing Asian American Health Research: Lack of Understanding of Community, Racism, and Data Equity
		Building Trust Between Academics and Community Partners
		ADAPT’s Evolution: Focus on Community-identified Priorities and Moving Research to Practice
		Reflections for Those Trying to Establish Academic Community Partnerships in the Post-Atlanta Era
		References
	Chapter 21: Stakeholder Engagement in Predictive Model Development for Clinical Decision Support
		Methods
			Stakeholder Outreach
			Building Capacity for Full Stakeholder Participation
			Predictive Model Development
		Results
			Stakeholder Engagement
			Selection of Study Questions and Outcomes
			Predictive Model Development
		Expanding Stakeholder Engagement in Methodological Research
		References
Part IV: Creating an Institutional Environment of Support for Broadly Engaged Team Science
	Chapter 22: Research Administration Practices for Proposal Development and Post-Award Management of Stakeholders and Community Participants
		Determining Research Roles and Requirements for Budget Development
		Planning for Compensation
		Planning a Proposal Budget that Includes Stakeholders
		Preparing Biosketches for Key Personnel
		Letter of Support
		Human Subjects Concerns
		Practices Continue to Evolve
		References
	Chapter 23: Starting Off Right: Supporting Community Involvement in the Evaluation of Research Proposals
		Proposals That Include Stakeholder Engagement Plans
		The Three Key Elements of a Stakeholder Engagement Plan
		Training and Support for the Preparation of Stakeholder Engagement Plans
		Recruiting and Training Reviewers
		Scoring Rubric
		Review Process and Integration into Overall Proposal Assessment
		Feedback on the Reviewing Process and Areas for Continued Exploration
		References
	Chapter 24: Role of Broadly Engaged Team Science in the Inclusion of Minority Populations as Research Participants and in All Roles on Research Teams
		Inclusion of Patients from Minority Populations in Clinical Research
		Improving Diversity Across All Roles on Research Teams
		References
	Chapter 25: Rewarding Team Science in Tenure and Promotion Practices: An Operational Imperative for the Academic Research Enterprise of the Twenty-First Century
		Incentivizing the Team Science Model to Invigorate Research and Scholarship
		Value of Team Science Approach
		Role of Team Science in Tenure and Promotion
		Next Steps for Supporting Team Science
		References
Epilogue
	Intersection of Broadly Engaged Team Science with Other Scientific Traditions
	Transformation
	Looking Ahead
References
Index