Main description:

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.

Contents:

1. Introduction

Alice Rushforth and Harry Selker

Part I Transforming Research with Broad Engagement

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

Sharon Terry

3. Broadly Engaged Team Science in Neonatal Research

Jonathan M. Davis

4. Patient Advocates in Cancer Care: A Rich Tradition and Evolving Role

Susan K. Parsons

5. National Kidney Foundation Patient Network

Silvia Ferre, Silvia Titan and Lesley A. Inker

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

Marisha E. Palm, Harry Selker, Theodora Cohen, Kenneth Kaitin, Kay Larholt, Mark Trusheim and Gigi Hirsch

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

Part II. Integrating Communities and Stakeholders into Broadly Engaged Team Science

8. Social Movements and Stakeholder Engagement

Peter Levine

9. A Basic Scientist's Journey: Engaging Public Stakeholders Through Civic Science

Jonathan Garlick

10. Lessons in Public Involvement from Across the Pond

Marisha E. Palm, Tina Coldham and David Evans

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

Sara Folta, Linda B. Hudson, Beverly Cohen and Apolo Catala

12. A Theory of Stakeholder-driven Community Diffusion

Erin Hennessy and Christina Economos

13. Monitoring and Evaluation of Stakeholder Engagement in Health Research

Thomas W. Concannon and Marisha E. Palm

Part III. Applying Broadly Engaged Team Science: Case Studies

14. 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, John B. Wong, Amy LeClair and Thomas W. Concannon

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

Robert Sege, Dina Burstein and Chloe Yang

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

Alissa Dangel and Mallory Whalen

17. Engaging Stakeholders to Decrease Study Start-up Delays

Denise H. Daudelin, Alyssa Cabrera, Alicea Riley and Jaime Chisholm

18. Health Literacy and Broadly Engaged Team Science: How One Study Team Used Plain Language Principles to Share Findings with Affected Communities

Sabrina Kurtz-Rossi, Doug Brugge and Sylvia Baedorf Kassis

19. Utilizing Patient Navigators to Promote Equitable and Accountable Research

MingqianLin, Douglas Hackenyos, Fengqing Wang, Nicole Savidge, Angela Wimmer, Antonia Maloney, Susan Mohebbi, Michele Guard and Susan K. Parsons

20. Asian American Research in the Post-Atlanta Era: Driving Community-engaged Research That Is More Meaningful, Responsive, and Actionable for Local CommunitiesCarolyn Leung Rubin, Ben Hires, Dawn Sauma and Yoyo Yau

21. Stakeholder Engagement in Predictive Model Development for Clinical Decision Support

Denise H. Daudelin

Part IV. Creating an Institutional Environment of Support for Broadly Engaged Team Science

22. Research Administration Practices for Proposal Development and Post-Award Management of Stakeholders and Community Participants

Carol Seidel

23. Starting Off Right: Supporting Community Involvement in the Evaluation of Research Proposals

Robert Sege and Marguerite Fenwood

24. Role of Broadly Engaged Team Science in the Inclusion of Minority Populations as Research Participants and in All Roles on Research Teams

Pamela B. Davis and Harry P. Selker

25. Rewarding Team Science in Tenure and Promotion Practices: An Operational Imperative for the Academic Research Enterprise of the 21st Century

Augusta Rohrbach and Caroline Attardo Genco

Epilogue

Debra Lerner, Thomas W. Concannon and Marisha E. Palm

Resource Guide