This session is intended for intermediate learners with an understanding of the basic principles of meaningful, safe, and inclusive patient and public engagement. Following this session, attendees will be able to: • Describe key steps in establishing an advisory group for patient and public engagement; • Develop a plan for effective advisory group meetings in the first year; and • Maintain advisory group activities of the course of a health research or services project.

1. INTRODUCTION TO PATIENT
ENGAGEMENT
Name | Date

2. • To identify research priorities
• To shape and clarify research question
• To select appropriate methods/co-design
• To co-create recruitment and information
materials for participants
• To identify meaningful outcomes
• To conduct data collection
• To interpret research findings
• To co-develop KT approaches/methods
Patient Engagement and Advisory
Groups

3. • What are the values and expectations of
people, families and communities living
with the health condition?
• What’s important to patients, informal
caregivers, families, friends and
communities?
• What level people expect to be
engaged in the research project and how
they would prefer to be involved?
Readiness to Engage - External

4. • To what extent does the research
team believe that patient engagement will
improve the outcome of the research?
• What is the potential for patient partners to
influence decision-making within the
research process?
• What is the likelihood the research team
will fully consider patient partner input?
• What resources are likely to be available
to support patient partner involvement?
Readiness to Engage - Internal

5. • Diversity of perspectives
• Consult/collaborate/user-driven
• Resources/timeline
• Feed off of each other’s ideas
• Community preference for engagement
• Connection
• Strengths and resiliency
• Social change
Why Choose an Advisory Group
Method for Engagement?

6. • Help people and communities living with the
health issue;
• Mean giving back to your community ;
• Aid in working towards improving the quality
of life not only for yourself, but others as well;
• Assist in improving the quality of care and
services not only for yourself, but others;
and/or
• Give you the opportunity to contribute your
valuable insights and perspectives on this
Why Patient Partners May Choose to
Engage:

7. • What patient engagement in the research
project is meant to achieve; and
• How patient partners might contribute to
decision-making in the research
process?
Purpose for Engagement

8. • Patient Partner Liaison
• Facilitation
• Administrative Support
• Audio/Visual/Tech Support
Resources Required - Staff

9. • Compensation for patient partners’ time, insight and
contributions to the project
• Food/beverages
• Transportation/Travel
• Childcare/Respite
• Accommodations
• Technology
• Accessible space
• Materials
• Printing
• Mailing
Resources Required - Financial

10. Online Patient Engagement Budget
Builder
http://umanitoba.ca/centre-for-healthcare-innovation/sites/centre-
for-healthcare-innovation/files/2022-02/2020-01-
29_chi_pe_budget_tool_v2.8-3.xlsx

11. • Who is affected differently by the health
issue?
• Who has different access to health care
services associated with this health
condition?
• Where along the health journey are
patients at?
• How am I going to ensure a diversity of
perspectives on my advisory group?
Who to Recruit

12. • Project Title
• Lay Language Overview of Engagement
Opportunity
• Roles and Responsibilities
• Time Commitment and Duration
• Honorarium/Compensation and
Reimbursement
• Contact Information
Callout

13. How to Write a Callout for Patient and
Public Partners
http://umanitoba.ca/centre-for-healthcare-
innovation/sites/centre-for-healthcare-
innovation/files/2022-02/call-for-patient-
and-public-partners.pdf

14. • Health Researchers
• Clinicians
• Healthcare Consumer Organizations
• Community Organizations
• Social Media
• Newspapers
• Radio
• People with lived/living experience
• Information Session
• Attending Events
Ways to Recruit

15. • Contact information
• Equity, Diversity and Inclusion
• Why you’re interested and what you feel
you bring to the table
• Skills and experiences
• Availability
• Preferences on how to engage
• Preferences on where to engage
Application

16. • Introductions and overview of project
• Would you be willing to tell us a little bit
about yourself and your health
experiences? (only as much as you feel
comfortable)
• Why are you interested in becoming a
member of the advisory group?
• Do you have any experience being on an
advisory group, a board or any similar
initiatives? Research project?
Interview

17. • What would you say are your special
interests, or unique life experiences or skills
that you could contribute to an advisory
group?
• What kind of commitment could you make
to this position?
• Are there any days or times that work best
for you to meet?
• Anything else that you would like us to
know about you? Or anything you didn’t get
to say?
Interview

18. • How do you feel about our group/research team
continuing our work online?
• We want to make sure you are able to fully participate
online. Can you let me know if you have a device with
an internet connection?
• Are you able to use audio and video on your device?
• Are you comfortable using Zoom or WebEx, or is there
another way you prefer to connect?
• Are there any health or ability restrictions we need to
be aware of in order to ensure we are meeting your
needs?
Online Engagement

19. • Has your availability changed? What are the
best times to set up a meeting?
• Do you feel you have space in your home
where you are comfortable to freely share
your thoughts and ideas?
• Do you have any suggestions for ground
rules when meeting online?
• Do you have any questions for me or the
team?
• Is there anything else you would like to talk to
me about regarding engaging online?
Online Engagement

20. • Introductions/Acknowledgements
• Ice Breakers
• Overview of project
• Opportunities to engage
• Confidentiality
• Compensation
• Communication
Orientation

21. • Patient Engagement 101
• Trauma-informed engagement
• Anti-oppressive and anti-racism approaches
• Cultural safety
• Conflict resolution
• CIHR SPOR Foundations in Patient-Oriented
Research curriculum
• SPOR SUPPORT Unit Training
• OCAP Principles
• CIHR TCPS 2 – Chapter 9
• Manitoba Indigenous Cultural Safety Training
Training

22. Roche, P. et al. Valuing All Voices: refining a trauma-informed,
intersectional and critical reflexive framework for patient engagement in
health research using a qualitative descriptive approach. Res Involv
Engagem 6, 42 (2020). https://doi.org/10.1186/s40900-020-00217-2
Relationship Building

23. Readiness to Engage Workbook
http://umanitoba.ca/centre-for-healthcare-innovation/sites/centre-
for-healthcare-innovation/files/2021-11/readiness-to-engage-
workbook.pdf

24. • What research decisions can advisory
group members inform?
• Looking at the project timeline, when do
these decisions have to be made?
• What possible participatory approaches
might we use to engage advisory group
where they are at?
• How will we handle the in-between times?
Mapping Out Your Engagement
Strategy

25. • The Importance of Ice Breakers
• Conversations around Safe/Brave Spaces
• Guiding Principles
• Vision Statement
• Justice, Equity, Diversity and Inclusion
(JEDI) Statement
• List of Counselling Supports and
Resources
• Wrap-Up
Advisory Group Foundations

26. • One research decision per meeting
• Think about participatory approaches that
will allow members to fully contribute their
insight, knowledge and expertise
• Meet people where they are at
Advisory Group Decision-Making

27. SAMPLE FIRST MEETING

28. HOUSEKEEPING ITEMS
Introductions/Acknowledgements
Ice Breaker
Safe Spaces/Guiding Principles
Purpose of Engagement
Break
Overview of Research Study
Opportunities to Engage
Benefits/Preferences for
Engagement
Next Steps and Wrap Up

29. WELCOME AND
ACKNOWLEDGEMENTS

30. ICEBREAKER ACTIVITY
• Introduce yourself
• [Brief instruction for icebreaker activity]

31. 31

32. IMPORTANCE OF SAFE SPACES
Physical Safety: Ensuring everyone feels safe
in the environment where we meet, as well as
our physical presence and actions.
Emotional & Psychological Safety:
Interpersonal communication (verbal & non-
verbal) needs to be respectful and empathetic.
Introduction

33. SAFE SPACES
• What does physical safety mean to you?
• What does it look like to you?
• What does it feel like to you?
• What does emotional /psychological safety
mean to you?
• What does it look like to you?
• What does it feel like to you?
Introduction

34. SAFE SPACES
• What does cultural safety mean to you?
• What does it look like to you?
• What does it feel like to you?
• What does spiritual safety mean to you?
• What does it look like to you?
• What does it feel like to you?
Introduction

35. GUIDING PRINCIPLES & VALUES
• Work together to create list
• Prominently displayed
• Review at start of each session
• Add or elaborate on principles
• Common language
Introduction

37. Safety vs. Comfort

38. PURPOSE OF ENGAGEMENT
• Why patient & public partners were selected
to participate in engagement
• Roles and expectations (for both patient and
public partners and the research team)
• Anticipated outcomes of engagement
activities
• Timelines, potential challenges, benefits for
patient and public partners
Engageme
nt

39. THE RESEARCH STUDY
• Lay language
• Brief description of background
• How patient and public partners play an
important role in the research
Engageme
nt

40. OPPORTUNITIES TO ENGAGE
• What decisions patient and public partners
can be involved in making
• How contributions will be used and who will
make final decisions
• Commitment needed (frequency & duration)
• Compensation & reimbursement (e.g.
parking, food provided, child-minding,
mileage, etc.)
• Confidentiality
• Opportunities for ongoing/future engagement
Engageme
nt

41. BENEFITS & PREFERENCES
• How does engagement benefit partners
• What are your preferences?
– Scheduling of meetings (day/weekend/evening/etc.)
– Frequency of meetings
– Location of meetings
– Accommodations and addressing barriers to
engagement
– Dietary preferences and restrictions
– Communication
– Facilitation
Engageme
nt

42. WRAP-UP
• Final thoughts
• Name one nice thing that you are going
to do for yourself today

43. OTHER POTENTIAL RELATIONSHIP-BUILDING
EXERCISES

44. • Earth: The valuable
experiential knowledge
brought by members
• Roots of tree: What we think
are the root causes of the
health issue
• Trunk: Dream big – what kind
of supports would you like to
see
• Branches: Looking at both
the roots and trees co-
Vision Statement – Adapted Tree of
Hope

45. • Justice – Dismantling barriers
• Equity – Allocating resources so everyone
has access to same opportunities
• Diversity – Differences between us based
on systems of power and oppression
• Inclusion – fostering sense of belonging by
valuing and amplifying voices traditionally
less heard
Justice, Equity, Diversity and
Inclusion Statement

46. PARTICIPATORY APPROACHES

47. Priority-Setting
• Nominal group technique
• Journey Mapping
• Observation of Existing Services
• Delphi
• Dotmocracy
• Draw, storytelling, write, photos
• James Lind Alliance

48. Research Question
• Discussion groups
• Interview one another
• Participatory decision-making

49. Outcomes
• Write, draw, story telling, take a photo of
outcomes that are important to you
• Tree of Life exercise – branches being the
desired outcomes
• Appreciative Inquiry technique

50. Methods and Design
• Citizen jury technique
• Charrettes
• Study circles
• Participatory design

51. Participant Materials
• Whiteboard
• Role-playing
• Conversation Circles
• Open Space

52. Data Collection
• Co-facilitators
• Co-interviewers
• Patient Observation

53. Interpretation of Findings
• What story do these findings tell us?
• Do they align with our own personal story?
• What story is not being told?

54. Knowledge Translation
• Focused conversations
• Discussion groups
• Participatory Design

55. Evaluation
• Appreciative Inquiry
• Digital storytelling
• Interviewing one another

56. Methods of PE: A Guide
http://umanitoba.ca/centre-for-healthcare-
innovation/sites/centre-for-healthcare-
innovation/files/2021-11/methods-of-
patient-and-public-engagement-guide.pdf

57. Potential Outline
• Meetings #1 and #2 – Relationship
building – Guiding Principles, Vision
Statement, JEDI statement
• Meeting #3 – Priority-setting and
Research Question– Journey mapping
• Meeting #4 – Evaluation - Appreciative
Inquiry
• Meeting #5 – Design – Study circles and
asynchronous (participant information)

58. Potential Outline
• Meeting #6 – Interpretation - Storytelling
• Meeting #7 and #8 – Knowledge
Translation – Participatory Design
• Meeting #9 – Wrap Up and Next Steps

59. Additional Considerations
• Sandwich with icebreakers and wrap-up
• Communicate how advisory group informed each
research decision (feedback loop)
• Knowledge Translation phase often takes more than one
meeting
• Touch on Guiding Principles on a regular basis
• Consider mid-review evaluation to make sure that people
are feeling good about engagement, feeling heard and
valued
• Regular touch-base/debriefing with members
• Choice and relationship-building important

60. Important Qualities
• Courage and honesty
• Willingness to model
• Presence
• Caring
• Belief in Group Process
• Openness
• Nondefensiveness in Coping with
Criticism

61. Important Qualities
• Self-Awareness
• Willingness to try new things and
experiences
• Belief in strengths and resiliency
• Self care
• Sense of humour
• Creativity
• Personal dedication and commitment