Tips and Tricks for Establishing a Patient Advisory Group

Presented on Sept. 10, 2024.

Learn how to effectively establish and sustain a patient advisory. This session will guide you through the essential steps to set up your group, plan productive meetings, and maintain engagement throughout your project. Equip yourself with practical strategies to enhance patient and public involvement in your work.

1. Tips and Tricks for
Establishing a Patient
Advisory Group
2024 SPOR Northwest Collaborative Forum
Carolyn Shimmin, Patient and Public Engagement Lead
George and Fay Yee Centre for Healthcare Innovation

2. We are gathered on the ancestral and
current day lands and waters of the
Anishinaabeg, Cree, Ojibway-Cree,
Dakota and Denesulinepeoples, and on
the National Homeland of the Red River
Métis. In northern Manitoba, we
acknowledge the ancestral lands of the
Inuit and gratefully acknowledge that our
water is sourced from Shoal Lake 40
First Nation.
We respect the Treaties that were made
on these lands, we acknowledge the
harms and mistakes of the past and
present, and we dedicate ourselves to
move forward in partnership with
Indigenous communities in a spirit of
reconciliation and collaboration.

3. •Carolyn Shimminis an employee of the George & Fay Yee
Centre for Healthcare Innovation
Disclosure

4. Patient and Public
Engagement Collaborative
Partnership

5. Patient Engagement and
Advisory Groups

6. What Research Decisions can
Partners Inform?
•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 interpretresearch findings
•To co-develop KT approaches/methods

7. Readiness to Engage -Internal
•To what extent does the research teambelievethat patient
engagement will improve the outcome of the research?
•What is thepotentialfor patient partners to influence decision-
making within the research process?
•What is the likelihood the research team willfully
considerpatient partner input?
•Whatresourcesare likely to be available to support patient
partner involvement?

8. Readiness to Engage -External
•What are thevalues and
expectationsof people, families and
communities living with the health
condition?
•What’s importantto patients, informal
caregivers, families, friends and
communities?
•Whatlevel people expect to be
engagedin the research project and
how they wouldprefer to be involved?

9. Why Choose an Advisory Group
Method?
•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

10. Why Patient Partners May
Choose to Engage:
•Help people and communities living with the health issue;
•Give 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 important health topic.”

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

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

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

14. Online Patient Engagement
Budget Builder

15. Who to Recruit
•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?

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

17. How to Write a Callout for Patient
and Public Partners

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

19. Application
•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

20. Interview
•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?

21. Interview
•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?
•Do you have any questions for us?

22. Online Engagement
•How do you feel about our group/research team meeting
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 Teams, 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?

23. Online Engagement
•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?

24. Some Additional Questions
•We want to make sure that you are able to fully participate:
•What kind of space makes you feel more at ease and comfortable (e.g.
quiet space or some noise, lighting, seating, etc.).
•Do you have a preferable space where you feel most comfortable to
freely share your thoughts and ideas?
•Do you prefer to have a support person with you?
•Who would this support person be?
•Do you have an item that you want to bring with you that helps to make
you feel supported (e.g. picture, something that’s meaningful to you)?
•Would you want us to bring any of the following items?
•colouringitems (i.e. Crayons, colouringbooks), playdough, puzzles, fidget items
•Do we need to be aware of any words, phrases, items, or spaces that may
elicit strong emotions ( for example things that can be triggering)?

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

26. Training
•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 –Chapter9
•Manitoba IndigenousCultural SafetyTraining

27. Relationship Building
•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
Engagem6, 42 (2020). https://doi.org/10.1186/s40900-020-00217-2

28. Readiness to Engage Workbook

29. Mapping Out Your Engagement
Strategy
•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?

30. Advisory Group Foundations
•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

31. Advisory Group Decision-Making
•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

32. Sample First Meeting

33. HOUSEKEEPING ITEMS
Introductions/Acknowledgements
IceBreaker
SafeSpaces/Guiding Principles
Purposeof Engagement
Break
Overview of Research Study
Opportunities to Engage
Benefits/Preferences for Engagement
Next Steps and Wrap Up

34. WELCOME AND
ACKNOWLEDGEMENTS

35. ICEBREAKER ACTIVITY
•Briefly introduce yourself
•Please take a moment to look at this photograph and reflect
what it means for you OR as what stands out to you.

36. 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 meanto you?
•What does it look like to you?
•What does it feellike to you?
Introduction

37. 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 meanto you?
•What does it look like to you?
•What does it feellike to you?
Introduction

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

40. Safety vs. Comfort

41. 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

42. The Research Study
•Lay language
•Brief description of background
•How patient and public partners play an important role in the
research

43. 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

44. 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

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

46. Other Potential
Relationship Building
Activities

47. Vision Statement –Adapted Tree
of Hope
•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-construct our group
vision

48. Justice, Equity, Diversity and
Inclusion Statement
•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

49. Participatory
Approaches

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

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

52. 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

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

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

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

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

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

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

59. Methods of PE: A Guide

60. 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)

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

62. 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

63. Important Qualities
•Courage and honesty
•Willingness to model
•Presence
•Caring
•Belief in Group Process
•Openness
•Non-defensiveness in Coping with Criticism

64. 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

65. Questions