1

“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

2

Amy Eisenstein, PhD

3

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

5

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

Series6

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

10

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

Series11

CONCRETE STRATEGIES TO SUPPORT

DIVERSITY IN ENGAGED RESEARCH

12

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

13

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

14

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

15

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

16

ELDERS

WITH DEMENTIA

• Factors for engagement– Respect– Discretion– Confidentiality

• Rural challenges– Education & Income– Internet– Transportation– Self-sufficiency

2018 Bureau of Sages Virtual Seminar Series

17

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

18

RACIAL AND

ETHNIC MINORITIES

19

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.

21

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

2018 Bureau of Sages Virtual Seminar Series

24

BENEFITS : “GETTING ON THE SAME PAGE”

QUESTIONS AND ANSWERS

25

“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

26

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

27

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

28

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

Series29

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

30

•

“A Valid Voice” Virtual Seminar Series

Bureau of Sages Opportunities

2018 Bureau of Sages Virtual Seminar Series