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.
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
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
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
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
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
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
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
Hinweis der Redaktion
Housekeeping: location of bathrooms, food available, etc.
Revise as needed based on planned activities – remember that although there are proposed times, it is important for patient and public partners to feel safe and heard and you may need to adjust times as you go through the ‘agenda’.
Welcome & Brief introduction – who the team is, what the purpose of the evening is
Guidance for land acknowledgements:
For University of Manitoba, see https://news.umanitoba.ca/acknowledging-traditional-territories/
For other Canadian locations, please see https://www.caut.ca/sites/default/files/caut-guide-to-acknowledging-first-peoples-and-traditional-territory-2017-09.pdf
Ensure icebreaker activities are appropriate, inclusive, and avoid re-traumatization. The intent is to find common ground and get people talking, but the focus should be positive.
SAMPLE ICEBREAKER - Please take a moment to look at this photograph and reflect what it means for you OR as you are observing what stands out for you. We will start introducing ourselves by saying our name and what we see in the picture, and then going around the circle until everyone has had the opportunity to share.
As you can see we were all looking the same photo, yet we all came up with something different based on our own perspectives. It’s important that when we are working together that we take into consideration all the different perspectives in order to create a holistic picture.
We wanted to start off by having a conversation about safety – what makes us feel safe. And the word “safety,” of course, can mean a lot of things. We can talk about physical safety – so is the place we are meeting here today, feel safe to everyone? It can also mean our own physical presence or actions (so sitting too close, leaning over, crossing arms, maybe certain things like this don’t make us feel safe). We also might mean emotional and psychological safety, so how we communicate with each other, both verbally but also non-verbally (for example eye rolling or turning away). It’s important for us to talk about what types of things make us feel safe and respected.
We’re going to look at each component of safety (i.e. physical, psychological, emotional, cultural, and spiritual) and ask the following questions:
What does “safety” mean to you?
What does “safety” look like to you?
What does “safety” feel like to you?
For facilitators, examples might be: Listening and not talking over top of each other, taking the time to understand and respect differing viewpoints, no shouting, allowing me time to process things, etc.
How does everyone feel about this list? Do you think we could use this list as our guide when we come together? Is there anything you would want to change or take out?
We’re going to look at each component of safety (i.e. physical, psychological, emotional, cultural, and spiritual) and ask the following questions:
What does “safety” mean to you?
What does “safety” look like to you?
What does “safety” feel like to you?
For facilitators, examples might be: Listening and not talking over top of each other, taking the time to understand and respect differing viewpoints, no shouting, allowing me time to process things, etc.
How does everyone feel about this list? Do you think we could use this list as our guide when we come together? Is there anything you would want to change or take out?
With the list
Facilitators – explain the difference between comfort and safety – you will be called out if you say something that is racist, sexist, ableist, homophobic, transphobic, classist, xenophobic, etc. – getting called out might feel uncomfortable, but that does not mean you are unsafe. In order to grow our trust and relationship, there may be times we need to challenge one another
Don’t be afraid to express your own reasons for becoming involved in this area of research, and why it is important to you on a personal level.
Patient-oriented research refers to a continuum of research that:
Engages patients as partners;
Focuses on patient-identified priorities;’
Improves patient outcomes;
Is conducted by multidisciplinary teams in partnership with relevant stakeholders; AND
Aims to apply the knowledge generated to improve healthcare systems and practices.
