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

36.
Safety vs. Comfort

37.
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

38.
THE RESEARCH STUDY
• Lay language
• Brief description of background
• How patient and public partners play an
important role in the research
Engageme
nt

39.
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

40.
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

41.
WRAP-UP
• Final thoughts
• Name one nice thing that you are going
to do for yourself today

42.
OTHER POTENTIAL RELATIONSHIP-BUILDING
EXERCISES

43.
• 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

44.
• 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

45.
PARTICIPATORY APPROACHES

46.
Priority-Setting
• Nominal group technique
• Journey Mapping
• Observation of Existing Services
• Delphi
• Dotmocracy
• Draw, storytelling, write, photos
• James Lind Alliance

47.
Research Question
• Discussion groups
• Interview one another
• Participatory decision-making

48.
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

49.
Methods and Design
• Citizen jury technique
• Charrettes
• Study circles
• Participatory design

50.
Participant Materials
• Whiteboard
• Role-playing
• Conversation Circles
• Open Space

51.
Data Collection
• Co-facilitators
• Co-interviewers
• Patient Observation

52.
Interpretation of Findings
• What story do these findings tell us?
• Do they align with our own personal story?
• What story is not being told?

53.
Knowledge Translation
• Focused conversations
• Discussion groups
• Participatory Design

54.
Evaluation
• Appreciative Inquiry
• Digital storytelling
• Interviewing one another

55.
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

56.
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)

57.
Potential Outline
• Meeting #6 – Interpretation - Storytelling
• Meeting #7 and #8 – Knowledge
Translation – Participatory Design
• Meeting #9 – Wrap Up and Next Steps

58.
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

59.
Important Qualities
• Courage and honesty
• Willingness to model
• Presence
• Caring
• Belief in Group Process
• Openness
• Nondefensiveness in Coping with
Criticism

60.
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