Final Agenda

Robert Jaeger and Pimjai Sudsawad, NIDILRR

Engaging With Health System Leaders: Strategies for Effective Research Partnerships

Q&A moderated by Kathleen Murphy, with reactors:

• John Kramer, Institute for Community Inclusion at University of Massachusetts Boston
• Deb Rose, Knowledge Translation Committee of the APTA Academy of Pediatric Physical Therapy
• Sandra Finestone, The Association of Cancer Patient Educators

Abstract: Despite increasing expectations that researchers engage in meaningful ways with stakeholders, there is little clarity about what engagement means, with whom researchers should engage, or how research partnerships can best be developed and managed. Common assumptions about research and knowledge translation often present barriers to engagement, and there is limited guidance on how best to develop effective partnerships with specific stakeholder groups.

Some of the greatest challenges are found in developing academic–health system research partnerships. Building on emerging evidence, this presentation will address approaches to health research partnerships; benefits, challenges, and ‘costs’ of partnering; and strategies for determining appropriate knowledge users for specific research activities. Practical guidance for selecting, developing and maintaining effective partnerships will be proposed. Specific examples from the perspectives of both researchers and health system decision-makers will be discussed.

Lost in Translation: How to Manage Multiple Stakeholders and Communicate Research Effectively in an Era of Competing Facts

Q&A moderated by Donna Mitrani, KTDRR, with reactors:

• John Kramer
• Deb Rose
• Sandra Finestone

Abstract: Strategic, intentional involvement of stakeholders represents a vital activity within the research enterprise. However, the varied interests, perspectives, and degrees of influence of entities and individuals touched by research can create a challenging landscape that is difficult to navigate.

What are the critical success factors for effectively communicating and interacting with key stakeholders? What pitfalls should be avoided? How can select stakeholders be enlisted to combat misperceptions that could undermine support for research? In this interactive presentation with Q&A, audience members will learn proven and actionable stakeholder management techniques, including how to segment stakeholders into similar categories, surface interests of each segment, and develop suitable, productive engagement approaches.

Disability Rights in Science: Community-Engaged Research With People With Disabilities

Q&A moderated by Kathleen Murphy, with reactors:

• John Kramer
• Deb Rose
• Sandra Finestone

Abstract: Community-engaged research is revolutionizing the conduct of science as it welcomes community members as equal partners in research and fosters processes and outcomes able to positively impact knowledge translation. This presentation will review theory, evidence, and actionable strategies related to engaging people with disabilities as equal members of research teams with an emphasis on early phases of project development, research ethics (including IRB approval), and how responsiveness to community member’s priorities can fuel knowledge translation.

Supporting Implementation Through Engaged Evaluation

Q&A moderated by Kathleen Murphy, KTDRR, with reactors:

• Shauna Crane, Center for Persons with Disabilities at Utah State University
• Susan Magasi, University of Illinois at Chicago
• Rylin Rodgers, Association of University Centers on Disability

Abstract: This presentation will provide an overview of how evaluation tools and methods can be used to support KT stakeholder engagement and implementation. Topics will include:

• Evaluation through the KT project cycle
• Evaluation tools that support KT implementation (the logic model or theory of change; mapping context and enabling factors; data use and engagement plan)
• Models for KT implementation and evaluation (communication model; Consolidated Framework for Implementation Research)
• Promising practices for supporting stakeholder engagement in implementation and evaluation (collaborative evaluation best practices; engaged/participatory evaluation as KT; evaluating stakeholder engagement; evaluating collaboration health)

Quantitative Measures to Assess Community Engagement in Research

Q&A moderated by Donna Mitrani, with reactors:

• Shauna Crane
• Susan Magasi
• Rylin Rodgers

Abstract: Measurement and evaluation of community engagement in research activities (patient/stakeholder perceptions of the benefit of collaborations that indicate how involved the patient/stakeholder feels) has been limited. There is a need to rigorously evaluate the impact of community/stakeholder engagement on the development, implementation and outcomes of research studies, which requires the development, validation, and implementation of tools that can be used to assess stakeholder engagement. Implementation of gold standard quantitative measures to assess community engagement in research would make a major contribution to community-engaged science. We first present the results of a systematic review of stakeholder engagement measures. Then, we present preliminary results of our efforts to develop and validate a better measure of stakeholder engagement for use in ongoing research projects.

Co-creating With Stakeholders: A Case of Engaging Through Concept and Design for Program Development

Q&A moderated by Kathleen Murphy, with reactors:

• Shauna Crane
• Susan Magasi
• Rylin Rodgers

Abstract: A key factor to successful stakeholder engagement is identifying strategies that bolster meaningful participation and that lead to contextually relevant and appropriate outcomes. Presenters from the NIDILRR-funded Research and Training Center on Disability in Rural Communities (RTC:Rural) will present the stakeholder engagement approaches used over the past 3 years as part of the Healthy Community Living development project. They will review strategies, tools, and lessons learned in the co-creation of independent living skills and health promotion curricula with key disability partners and stakeholders. They will discuss specific activities and outcomes, including stakeholder recruitment, development of relationships, the curriculum development framework used, in-person and distance-based communication strategies, collection of stakeholder feedback, and how regular stakeholder engagement informed the creation of the Healthy Community Living program. This stakeholder case example presents the benefits and challenges of stakeholder engagement in creating meaningful end-user products.

How Do You Know Stakeholders Have an Impact on Research?

Q&A moderated by Donna Mitrani, KTDRR, with reactors:

• Jennifer Weaver, George Washington University
• Eileen Brennan, Research and Training Center for Pathways to Positive Futures at Portland State University
• Lorraine Johnson, LymeDisease.org

Abstract: Stakeholder engagement is increasingly common in health research, with protocols for engaging multiple stakeholder groups becoming normative in patient-centered outcomes research. When designing a stakeholder engagement approach for a given research study, researchers need to decide which stakeholder groups to engage, at what study stages, and using what methods—given the resources available and the desired amount of stakeholder engagement.

This presentation offers practical guidance for designing a multi-stakeholder engagement approach for a given project or study. Specifically, we present a sequence of questions to assist in selecting appropriate modes and methods of multi-stakeholder engagement for a given project. We introduce a matrix that study investigators can use to summarize their multi-stakeholder engagement approach, and we provide a list of further online resources. This guidance, accompanying matrix and list of resources can assist researchers to consider more systematically which stakeholder groups to engage, in what way, and at what study stages. The matrix also provides a potential structure for evaluating the impact of stakeholder engagement approaches on research activities: by documenting how stakeholders are paired up with specific research activities, the matrix points at specific inputs and outputs for evaluating engagement.

Supporting Sustainable Change in Large, Complex Organizations

Q&A moderated by Kathleen Murphy, KTDRR, with reactors:

• Jennifer Weaver
• Eileen Brennan
• Lorraine Johnson

Abstract: Facilitating sustainable, evidence-based change in large, complex organizations can be challenging. Supporting a change process often requires balancing and encouraging pressure to change from both inside and outside the organization, educating and creating political will to change in key stakeholders and leaders, understanding and working within organizational constraints and hierarchies, developing formal and informal internal structures to support change, and mentoring and supporting champions. In this presentation, we discuss these issues within a project that is supporting systemic changes that address the needs of incarcerated individuals with traumatic brain injury (TBI) in the Washington State Department of Corrections.

Have You Selected, Connected, and Nurtured Your Stakeholders Effectively?

Q&A moderated by Donna Mitrani, with reactors:

• Jennifer Weaver
• Eileen Brennan
• Lorraine Johnson

Abstract: If you wish to evaluate the impact you have had on your stakeholders, you must first circle back to determine whether you worked with the right stakeholders, connected in a meaningful way and developed the right relationships. Failure to have an impact on your stakeholders may not just be because of the deliverables of your research but could, in fact, happen across multiple levels and aspects of the stakeholder relationship process. This presentation explores the elements of stakeholder selection, connection and management as facilitators of impact. Specifically, the presentation aims to explore the ‘how to’ of engagement for the successful outcomes and the measures you can use to evaluate your impact.