“A Valid Voice” Virtual Seminar Series Bureau of Sages Opportunities Thank you for joining our Virtual Seminar! We will start soon. Please take a moment to explore our Virtual Seminar CHAT and Q&A features! 1 2018 Bureau of Sages Virtual Seminar Series
WELCOME WELCOME We will use 2 engagement tools for this Virtual Seminar: • Chat • Q&A Erin McGaffigan, PhD 2018 Bureau of Sages Webinar Series 2
DEFINING STAKEHOLDER ENGAGEMENT IN RESEARCH To work collaboratively with those who have a direct stake in your research to ensure your focus, design, and findings are translatable, leading to sustainable solutions to well-recognized problems. Loved Participants/ Policy Community Providers Ones/ Individuals Makers Leaders Allies Accessing Care 3 2018 Bureau of Sages Virtual Seminar Series
CONTINUUM OF COMMUNITY (STAKEHOLDER) ENGAGEMENT IN RESEARCH PI or Co-PI Research Partners or Team Extent of Commitment Members Governance and Advisory Groups Ongoing Involvement Short-term Involvement Reviewers, Interviewees, and consultants Knowledge Users and Experiencers 4 2018 Bureau of Sages Virtual Seminar Series # of Stakeholders Contents adapted from Wilkins CH et al. 2015
Virtual Seminar Series Date Focus Seminar 1 6/20/18 Introduced the Concept of Stakeholder Engagement Research and Reviewed Assumptions and Challenges Seminar 2 8/22/18 Recognized Common Challenges to Engagement in Research and Discussed Helpful Solutions Seminar 3 10/10/18 A Look at One Model: Bureau of Sages Opportunities Seminar 4 12/12/18 Deeper Dive on Engaging Frail Elders and Individuals from Diverse Backgrounds 2018 Bureau of Sages Webinar Series 5
“A Valid Voice” Virtual Seminar Series Bureau of Sages Opportunities This program was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (7206-CJE) Amy Eisenstein, PhD 6
LEARNING OBJECTIVES 1) Understand the background, vision and values of the Bureau of Sages 2) Explain the model of engagement and evaluation used in the Bureau of Sages 3) Discuss opportunities for researchers – Learning from other researchers – Engaging with/presenting to Stakeholder groups – Finding funding for engaged research & outlets for publications 2018 Bureau of Sages Virtual Seminar 7 Series
THE PATIENT CENTERED OUTCOMES RESEARCH INSTITUTE PCORI’s Mission PCORI helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community. 8 2018 Bureau of Sages Virtual Seminar Series
PURPOSE OF BUREAU OF SAGES PROJECT Bring together a variety of stakeholders to learn about and discuss research concepts in order to provide voice to the direction, design, and implementation of national research on aging. 9 2018 Bureau of Sages Virtual Seminar Series
BUREAU OF SAGES OBJECTIVES To prepare a diverse group of Stakeholders with information, knowledge, and training on ‘Patient - Centered Outcomes Research’ and ‘Comparative Effectiveness Research’ in order for them to: 1. Serve as an advisory bureau to CJE SeniorLife’s internal research department. 2. Serve as an advisory bureau to local and national researchers wishing to conduct Comparative Effectiveness Research or Patient- Centered Outcomes Research. 3. Serve as individual advisors to larger Patient-Powered Research Networks (PPRNs). 4. Serve as champions and role models for incorporating the voice of diverse patient populations into research. 10 2018 Bureau of Sages Virtual Seminar Series
WHO PARTICIPATED IN THE DEVELOPMENT OF THE BUREAU OF SAGES? • Lieberman Community and Virtual Senior Center Members gained experience in expressing their expertise as patients and users of healthcare. • Clinicians and researchers gained experience in listening for and identifying meaningful outcomes that matter to users of the health care system. 11 2018 Bureau of Sages Virtual Seminar Series
Mission: Empowering nursing home community members and stay- at-home elders to learn and collaborate with researchers to advocate for timely, useful research that matters to them Drawing credit to Katharine Houpt
A SAGE PERSPECTIVE https://www.youtube.com/watch?v=7UdKgmoXT14 13 2018 Bureau of Sages Virtual Seminar Series
STRATEGIES USED TO CREATE THE BUREAU ▪ The use of technology (the Virtual Senior Center) to incorporate the voice of Stay-at-Home Elders. ▪ Facilitator guides for all assignments and meetings in order to assist with the challenges of leading discussions through multiple formats (virtually, in-person, and/or by phone). ▪ Training and presentation templates to present research to an audience with diverse abilities. ▪ Creation and implementation of hands-on evaluation method incorporating visual cues (see example below). 14 2018 Bureau of Sages Virtual Seminar Series
INNOVATIVE SOLUTIONS: THE VIRTUAL SENIOR CENTER 15 2018 Bureau of Sages Virtual Seminar Series
HANDS ON EVALUATION 16 2018 Bureau of Sages Virtual Seminar Series
A RESEARCHER PERSPECTIVE Anna-Liisa LaCroix, MPH Administrator, Central Baptist Village "The Bureau of Sages model is unique since it is a vehicle for nursing home residents to express their voice and contribute to a greater effort. It also offers an original way to engage residents in an intellectual manner.” 17 2018 Bureau of Sages Virtual Seminar Series
WHAT ELSE DO I LIKE ABOUT THE BUREAU OF SAGES MODEL? • It’s an ongoing rather than stand alone activity ; this creates opportunities to build relationships, consider significant questions or topics, and engage in stimulating discussion. • It amplifies the voices of residents who traditionally have less of a chance to be heard on a large stage ; many facilities practice person-centered care and strive to connect residents to the larger community, but it can be a struggle. • There is a framework for resident engagement ready for your use. Residents demonstrate satisfaction and increased self- esteem by participating. They belong to something and have a unique identity separate from “nursing home resident.” 18 2018 Bureau of Sages Virtual Seminar Series
STRUCTURE OF CURRENT BUREAUS Lieberman Community Bureau Virtual Senior Center Bureau Mesulam Bureau 19 2018 Bureau of Sages Virtual Seminar Series
A RESEARCHER PERSPECTIVE Margaret Danilovich PT, DPT, PhD Department of Physical Therapy and Human Movement Sciences Feinberg School of Medicine, Northwestern University "The advice and feedback from the Bureau of Sages is invaluable to researchers. This opportunity is unlike any other experience I have had as a researcher by allowing me to share my ideas with the patient population I will be working with to get feedback in the formative stage.” 20 2018 Bureau of Sages Virtual Seminar Series
• Benefits of Engagement • Grant-writing; shaping the approach • Person-resources; orientation & training • Academic-related benefits 21 2018 Bureau of Sages Virtual Seminar Series
TAKEAWAYS FOR RESEARCHERS 22 2018 Bureau of Sages Virtual Seminar Series
• Opportunities for Researcher Involvement • Process for contacting an existing bureau – https://www.cje.net/research-education/bureau-sages/contact- bureau • GSA Interest Group on Patient/ Person Engagement in Research – http://connect.geron.org/home 23 2018 Bureau of Sages Virtual Seminar Series
OPPORTUNITIES FOR CREATING YOUR OWN BUREAU • Process for establishing a Bureaus – Engagement Resources: https://www.cje.net/research- education/bureau-sages/sages-every-setting – Manual & Training Toolkit: https://www.cje.net/research-education/bureau- sages/resources • Additional information – Latest News! https://www.cje.net/research- education/bureau-sages/bureau-sages-news 24 2018 Bureau of Sages Virtual Seminar Series
FUNDING AND PUBLICATIONS • Funding – Check our resource list! https://www.cje.net/research- education/bureau-sages/sages-every-setting – Focus on necessary/appropriate time for partnership development and proper incentives • Publications – Progress in Community Health Partnerships: Research, Education, and Action. https://www.press.jhu.edu/journals/progress-community- health-partnerships-research-education-and-action – Lay publications 25 2018 Bureau of Sages Virtual Seminar Series
• “A Valid Voice” Virtual Seminar Series Bureau of Sages Opportunities Please keep a look out in your email! • Virtual Seminar Feedback Survey – https://goo.gl/forms/x0XrrM4KfGVGTJih1 • Link to our Virtual Seminar website page – https://www.cje.net/research-education/bureau- sages/sages-every-setting – Registration for future Virtual Seminars – Today’s Recording, Slides, and Resource List 26 2018 Bureau of Sages Virtual Seminar Series
“A Valid Voice” Virtual Seminar Series Bureau of Sages Opportunities QUESTIONS AND ANSWERS 27 2018 Bureau of Sages Virtual Seminar Series
“A VALID VOICE” VIRTUAL SEMINAR SERIES ENGAGING STAKEHOLDERS IN RESEARCH Reminder! UPCOMING EVENTS! Date Focus Seminar 4 12/12/18 Deeper Dive on Engaging Frail Elders and Individuals from Diverse Backgrounds 28 2018 Bureau of Sages Virtual Seminar Series
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