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Tips and Tricks for Establishing a Patient Advisory Group

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Tips and Tricks for Establishing a Patient Advisory Group

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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.

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.

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Tips and Tricks for Establishing a Patient Advisory Group

  1. 1. INTRODUCTION TO PATIENT ENGAGEMENT Name | Date
  2. 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. 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. 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. 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. 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. 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. 8. • Patient Partner Liaison • Facilitation • Administrative Support • Audio/Visual/Tech Support Resources Required - Staff
  9. 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. 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. 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. 12. • Project Title • Lay Language Overview of Engagement Opportunity • Roles and Responsibilities • Time Commitment and Duration • Honorarium/Compensation and Reimbursement • Contact Information Callout
  13. 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. 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. 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. 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. 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. 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. 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. 20. • Introductions/Acknowledgements • Ice Breakers • Overview of project • Opportunities to engage • Confidentiality • Compensation • Communication Orientation
  21. 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. 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. 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. 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. 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. 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. 27. SAMPLE FIRST MEETING
  28. 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. 29. WELCOME AND ACKNOWLEDGEMENTS
  30. 30. ICEBREAKER ACTIVITY • Introduce yourself • [Brief instruction for icebreaker activity]
  31. 31. 31
  32. 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. 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. 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. 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. 36. Safety vs. Comfort
  37. 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. 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. 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. 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. 41. WRAP-UP • Final thoughts • Name one nice thing that you are going to do for yourself today
  42. 42. OTHER POTENTIAL RELATIONSHIP-BUILDING EXERCISES
  43. 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. 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. 45. PARTICIPATORY APPROACHES
  46. 46. Priority-Setting • Nominal group technique • Journey Mapping • Observation of Existing Services • Delphi • Dotmocracy • Draw, storytelling, write, photos • James Lind Alliance
  47. 47. Research Question • Discussion groups • Interview one another • Participatory decision-making
  48. 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. 49. Methods and Design • Citizen jury technique • Charrettes • Study circles • Participatory design
  50. 50. Participant Materials • Whiteboard • Role-playing • Conversation Circles • Open Space
  51. 51. Data Collection • Co-facilitators • Co-interviewers • Patient Observation
  52. 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. 53. Knowledge Translation • Focused conversations • Discussion groups • Participatory Design
  54. 54. Evaluation • Appreciative Inquiry • Digital storytelling • Interviewing one another
  55. 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. 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. 57. Potential Outline • Meeting #6 – Interpretation - Storytelling • Meeting #7 and #8 – Knowledge Translation – Participatory Design • Meeting #9 – Wrap Up and Next Steps
  58. 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. 59. Important Qualities • Courage and honesty • Willingness to model • Presence • Caring • Belief in Group Process • Openness • Nondefensiveness in Coping with Criticism
  60. 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

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.

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