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“A Valid Voice” Virtual Seminar Series
2018 Bureau of Sages Virtual Seminar Series
Thank you for joining our Virtual Seminar!
We will start soon. Please take a moment to explore our
Virtual Seminar CHAT and Q&Afeatures!
Erin McGaffigan, PhD
This program was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington
PCORI Engagement Award (7206-CJE)
“A Valid Voice” Virtual Seminar Series
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Amy Eisenstein, PhD
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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.
THE PATIENT CENTERED OUTCOMES RESEARCH INSTITUTE
2018 Bureau of Sages Virtual Seminar Series
Virtual Seminar SeriesDate 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
2018 Bureau of Sages Webinar Series 4
Seminar 4 12/12/18 Deeper Dive on Engaging Frail Elders and
Individuals from Diverse Backgrounds
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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.
ProvidersLoved Ones/ Allies
Participants/ Individuals
Accessing Care
Policy Makers
Community Leaders
2018 Bureau of Sages Virtual Seminar Series
DEFINING STAKEHOLDER
ENGAGEMENT IN RESEARCH
• Recognize the benefit of culturally reflective recruitment and engagement practices
• Identify crucial factors to consider when engaging hard to reach and diverse groups in research
• Explore concrete strategies, through case examples, to actively engage “difficult to reach” groups in the design, implementation, and interpretation of research
What do we mean by “hard to reach” and diverse groups? 2018 Bureau of Sages Virtual Seminar
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TODAY’S LEARNING OBJECTIVES
Keith Jones
Presenter and Trainer, Multi-Cultural, Cross-Disability Engagement
Founder, President and CEO of SoulTouchin' Experiences
72018 Bureau of Sages Virtual Seminar Series
Aging is Not a Monolith
• Understand the communities in which research is being conducted (local history, cultures, values, traditions, needs, and assets)
Reach Out for the Expertise
• Cultural implications for data collection, analysis, interpretation
• Multiple perspectives when determining what counts as credible evidence
2018 Bureau of Sages Virtual Seminar Series 8
GUIDING PRINCIPLES FOR SUPPORTING
DIVERSITY IN ENGAGED RESEARCH
Know your Bias
• Awareness of your own cultural position and how that compares to other’s cultural positions
• Evaluator’s life experiences can be an asset or a limitation
There are Benefits to Inclusion in Research…
• Consider new research questions
• Understand the problem through a richer lens
• Strengthen data collection tools
• Interpret findings based on cultural norms and values
• Enhance dissemination reach2018 Bureau of Sages Virtual Seminar Series 9
GUIDING PRINCIPLES FOR SUPPORTING
DIVERSITY IN ENGAGED RESEARCH
• Feel I have nothing to contribute
• Too tired, not feeling well
• Uncertainty about how confidential information will be used
• Cultural and language differences
• Sensory impairments causing communication challenges
• Cognitive impairments causing forgetfulness and confusion
• Use of written, often complicated, often untranslated materials
• Can’t get there (e.g., transportation, inaccessibility, family or worker support, time)
2018 Bureau of Sages Virtual Seminar Series
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COMMON MYTHS (OR REAL OBSTACLES?)
TO ENGAGED RESEARCH
• Build community partnerships
• Be structured, yet flexible
• Seek family and worker support, as needed
• Meet in already utilized spaces; provide transport assistance, when needed
• Make documents accessible and inviting
• Develop trust and demonstrate people are valued
• Provide incentives that matter2018 Bureau of Sages Virtual Seminar
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CONCRETE STRATEGIES TO SUPPORT
DIVERSITY IN ENGAGED RESEARCH
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THE RESEARCHER PERSPECTIVE
2018 Bureau of Sages Virtual Seminar Series
Jane Karnes Straker, PhDDepartment of Sociology & GerontologySenior Research Scholar, Director of Research and Adjunct Associate Professor
Katherine Abbott, PhD, MGSDepartment of Sociology & GerontologyRobert H. and Nancy J. Blayney Professor, Assistant Professor,Scripps Research Fellow
• Who is in the system that can help you?– Colleagues and data sources– LTSS Ombudsmen– State Unit on Aging– Professional associations
• Who can you partner with?– Kinship Navigators/Support Groups– Senior Centers– Area Agencies on Aging– Service Providers– Case Managers
2018 Bureau of Sages Virtual Seminar Series
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FINDING
DIVERSE POPULATIONS
• Building Relationships
• Defining Expectations
• Establishing Communication Guidelines
• Developing Shared Understanding
• Facilitating Dialogue
• Valuing Contributions
Levy, Michelle; Holmes, Cheryl; Mendenhall, Amy; and Grube, Whitney (2017) "Engaging rural residents in patient-centered health care research," Patient Experience Journal: Vol. 4 : Iss. 1 , Article 6. Available at: https://pxjournal.org/journal/vol4/iss1/6
2018 Bureau of Sages Virtual Seminar Series
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FACTORS FOR
SUCCESSFUL ENGAGEMENT
• Building relationships and trust
– Multiple visits with multiple groups
– E-mail or snail mail
– Call
• Work is iterative; think in phases
2018 Bureau of Sages Virtual Seminar Series
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ENGAGING
COMMUNITIES
• Could your research benefit from feedback?
• Abilities at different stages– Mild cognitive impairment
– Moderate & severe
• Engagement of guardians/families– Gatekeepers
• Strategies for successful meetings
2018 Bureau of Sages Virtual Seminar Series
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ELDERS
WITH DEMENTIA
• Factors for engagement– Respect– Discretion– Confidentiality
• Rural challenges– Education & Income– Internet– Transportation– Self-sufficiency
2018 Bureau of Sages Virtual Seminar Series
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RURAL
POPULATIONS
• Trusted partners for entrée
• Engage from conceptualization of study
• Consider a mentoring model
• Offer flexibility
• English as a second language
• Recruit/hire consultants representing group to initiate/engage
2018 Bureau of Sages Virtual Seminar Series
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RACIAL AND
ETHNIC MINORITIES
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THE RESEARCHER PERSPECTIVE
2018 Bureau of Sages Virtual Seminar Series
Rebecca Emily Johnson, PhDResearch Assistant Professor of Medical Social Sciences,Northwestern University Feinberg School of Medicine
Community Academic
PARTNERSHIP CASE STUDY
A community-academic partnership of HCAs, informal
caregivers, and other stakeholders working together
to create a health communications skills training program for HCAs delivering
services to home bound older adults in receipt of Medicare
and Medicaid services.
Goals for Engagement
➢ Effective partnership with community orientated organization.
➢ Meaningful engagement with perspective of home care aides and informal caregivers.
➢ Meaningful engagement with older adults to find out what matters to them.
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PARTNERSHIP GOALS
PARTNERSHIP FOR FULL ENGAGEMENT
Researchers learn the content of in-service training; agency
employment practices.
It is feasible for HCAs to conduct interviews.
Agency learns clients want to share what matters.
HCAs learn to interview clients about health topics.
HCA/client dyads identify issues that matter, together.
HCAs self-assess comfort level with interviewing.
CO-LEARNING
https://www.pcori.org/research-results/2016/hapeer-home-care-aides-patient-centered-education-and-engagement-research
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BENEFITS : “GETTING ON THE SAME PAGE”
QUESTIONS AND ANSWERS
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“A Valid Voice” Virtual Seminar Series
2018 Bureau of Sages Virtual Seminar Series
• Think about where you’d like collaboration to take you-guide your outreach, but remain flexible
• Seek consensus on guiding principles or a mission statement to guide your work
• Recognize your bias and seek to eliminate bias in your language
• Call on the community experts for assistance
• Provide orientation and ongoing co-learning opportunities
2018 Bureau of Sages Virtual Seminar Series
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IN SUMMARY… (1 OF 2)
• Promote a sense of community through non-hierarchical facilitation and accessible practices
• Manage meetings to allow fair representation of voices
• Embrace different perspectives
• Ask participants directly if they feel the researcher/research is sensitive to their culture
2018 Bureau of Sages Virtual Seminar Series
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IN SUMMARY… (2 OF 2)
• Defined stakeholder engagement in research and range of engagement methods
• Tackled common assumptions and obstacles with concrete strategies and solutions
• Examined one model of engagement: the Bureau of Sages Model
• Looked closer at the engagement of groups that are especially challenging to engage and demonstrated ways to do so
2018 Bureau of Sages Virtual Seminar Series
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WHAT AN AMAZING 7 MONTHS!
• Engagement is difficult, but it is so worth it
• Stakeholders want to be engaged, and it is often HOW you engage them that matters
• There is not just one method to engagement; engagement methods are driven by the project and the needs of the community
• Community partnerships are so important to ensure you build trust and break down barriers
• Sharing the role of expert is absolutely required2018 Bureau of Sages Virtual Seminar
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WHAT WE LEARNED
Please keep a look out in your email!
• Virtual Seminar Feedback Survey
– https://goo.gl/forms/mjmUFhxdPPyVeeAS2
• Link to our Virtual Seminar website page
– https://www.cje.net/research-education/bureau-sages/sages-every-setting
– Today’s Recording, Slides, and Resource List
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“A Valid Voice” Virtual Seminar Series
Bureau of Sages Opportunities
2018 Bureau of Sages Virtual Seminar Series
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