This session, tailored for intermediate learners, offers a deep dive into patient and community engagement in health research, specifically focusing on its pivotal role in driving policy change. Learners will emerge equipped with: 🟠 A comprehensive understanding of the benefits of patient and community engagement in health research. 🟠 The ability to articulate the principles of authentic patient and community engagement. 🟠 A clear definition of intersectionality and practical insights into incorporating its principles into their patient and community engagement strategies. 🟠 An appreciation for the pivotal role of advocacy and the development of public- and stakeholder-facing materials in research programs aimed at influencing health policy.

1. Patient & Community Engagement of
Sexual & Gender Minority Populations
For Research Leading to Health Policy Change

3. Objectives
PRESENT A PATIENT-ORIENTED RESEARCH
PROGRAM FOCUSED ON HEALTH POLICY
REVISION
PROVIDE AN OVERVIEW OF PATIENT-
ORIENTED RESEARCH AND PATIENT
ENGAGEMENT
DISCUSS HEALTH POLICY REVISION AS A
RESEARCH PROGRAM GOAL

4. Sexual Orientation and Gender Identity
(SOGI) in Organ and Tissue Donation
and Transplantation (OTDT) Research
Program

6. Sexual Orientation and Gender Identity
SOGI-diverse persons make up 10% of the global population.
Gender identity and sexual orientation are distinct concepts.
SOGI-diverse persons are not a homogeneous group.
Social identities and lifestyles as well as lived experiences position individuals to experience certain
advantages and disadvantages
There exists a spectrum of privilege and power even within systematically oppressed groups.

7. https://www.cbrc.net/ending_discriminatory_practices_in_organ_and_tissue_donation_and_transplantation_otdt

9. Opportunities to Enhance Equity

16. Starting this research program
Structured literature searching
Collaborative team building with stakeholders
Planning for patient engagement
Funding patient engagement

17. Discovery Phase
SOGI/OTDT
-patient & caregiver
advisory team
Scoping review
-SOGI/OTDT
ODO data scan Systematic review
-Sociodemographics
Policy critique
-CBRC, Health Canada
policy critique

18. Work Underway
Observational population
cohort study
In-depth interviews
SOGI x OTDT intersections
Canadian national SOGI
public survey
OTDT Canadian national
healthcare worker survey
Economic evaluation Risk modelling analysis

20. Next Steps
National Consensus Process
CST, CDTRP, Health Canada, CBS, CSA, CCCS
Interventions
National OTDT HCW SOGI cultural humility
training curriculum

21. Equity Focused Patient
& Community
Engagement

22. SPOR Definition of Patient-Oriented Research
Engages patients as partners
Focuses on patient-identified priorities
Improves patient outcomes
Is conducted by multidisciplinary teams in partnership with relevant stakeholders
Aims to apply the knowledge generated to improve healthcare systems and practices

23. What is patient engagement
in health research?
The meaningful and active involvement of patients in
the:
• Governance of research
• Priority-setting of research
• Conduct of research
• Knowledge translation of research
- CIHR, SPOR definition

24. Engagement with
equity-deserving
populations

25. Health Equity…
…means the absence of avoidable or
modifiable differences in health among
populations or groups defined socially,
economically, or geographically (e.g.,
northern/rural/remote, racialized, gender
minorities, etc.)
Health inequities are:
measurable health differences due to underlying
levels of social advantage or power
associated with consistent patterns across the
population
considered to be unfair

27. Equity vs. Equality
• Equal care should not be confused with equitable care
oEquitable care incorporates unique needs that people have based on their
social identities (e.g., language, income, gender, etc.)
oEqual care = Same care (and fails to achieve equitable care)
• Understanding health inequities requires recognizing the impact of
social determinants of health and how they affect patients, families,
communities and health-care organizations

28. Positionality
Privilege
Power
Oppression

31. Step 1 – Articulate a clear
purpose
Define purpose of engagement
Identify health inequities through research
Prioritize marginalized communities
Develop preliminary goals of engagement

32. Step 2 – Plan Collaboratively
with Partners
Map and prioritize potential partners
Convene partners to discuss prelim goals
Refine goals based on feedback from potential
partners
Reconvene with partners to define shared goals

33. Step 3 – Develop
Engagement Approach
Review & validate engagement purpose, goals, objectives
and outcomes with the selected partners
Develop the engagement approach
Identify who will conduct the engagement, where & when
Promote and prepare for the engagement

34. Barriers to Engagement
Question you’re asking
Sampling certain populations
Communication barriers
Health literacy
Systemically marginalized and oppressed populations
Previous negative healthcare experiences (e.g., trauma, mistrust)
Competing demands
Low SES
Location of engagement
Power dynamics
Facilitator
Other patient partners in the room

35. Budgeting for Engagement
Compensation for time, energy & expertise
• Monetary
• Payment
• Charitable donation
• Gifts/Tokens
• Things that can help patients meet their personal goals
Discuss with individuals 1:1 on what they need
Granting agencies recognize the need to include these items in funding
applications

36. Budgeting for Engagement
Recruitment
Education, Training,
Mentorship, and
Practical Research
Experience
Engagement
Process
Knowledge
Translation &
Dissemination

37. Step 4 – Conduct
Engagement
Collect observations and responses
Provide value to participants based on identified
reimbursement approach
Collect feedback from participants on engagement
experience
Collectively establish next steps and future plans that
include involvement of both parties

38. Step 5 – Use Engagement
Feedback
Identify opportunities to incorporate engagement
feedback into initiatives, programs and activities
Define short and longer-term impacts and outcomes of
engagement feedback on strategy and plans
Incorporate feedback into projects and activities
Collect data on how the feedback contributed to short and
longer-term outcomes

39. Step 6 – Communicate &
Evaluate Impact
Evaluate results against engagement goals, objectives and
outcomes
Disseminate key learnings from engagement experience
Communicate impact of participant feedback to projects,
initiatives and activities
Discuss whether learnings resonate with participants &
how future engagement could be improved

40. Continued vs. Ad-hoc Engagement
Continued Engagement
Considerations
• Ongoing engagement with the same individual or
group
• Greater opportunity to tackle complex problems
• Most respectful way to engage given relationship
building and longer-term commitment
• Smaller sample size
• Can take more time to build rapport and foster
participation
Techniques
• Advisory panel, advisory team, council, working
group, etc.
Ad-hoc Engagement
Considerations
• One-time engagement exercises
• Large sample size, potential for more diverse
inclusion
• Fast response to a problem
• May be less resource intensive
• May work better with a simple & well-defined
opportunity/problem
Techniques
• Survey, interviews, focus groups, town hall,
social media

41. Case Study
Sexual orientation and gender identity in organ and tissue donation and
transplantation

42. SOGI OTDT Engagement Process
Establish a collaborative
group with diverse sexual
orientations and gender
identities
Literature review &
expert discussion
Partner with community-
based queer research
and advocacy
organizations
Concomitant
development of
proposed research
program
Advisory team with lived
experience & identities
Recruitment approach:
open call, social media,
mail send out, snow-ball
sampling

43. SOGI OTDT Advisory Team
Initial funding from small
patient engagement grant
Subsequent funding built
into grant applications
Professional facilitation from
MB SPOR SUPPORT unit
Advisory team are co-
creators and collaborators

44. Questions about
engagement?
• Share with the group what population you
have, or would like to, engage to inform your
research
• What is a key equity-deserving population you
want to include?
• How might you recruit members from this
group?

45. Health Policy Revision as a
Research Program Goal

46. Health Policy Revision
We identified early on that there
were many policies in the OTDT
system that were inequitable
and not data-driven
The overarching goal of our
research program is equitable
policy revision
To achieve this, we made an
engagement plan both for
impacted populations and key
stakeholder organizations and
decision-makers
We planned academic output
and both public-facing and
stakeholder-facing work

47. OTDT System
REGULATED BY HEALTH CANADA STANDARDS DEFINED BY CANADIAN
STANDARDS ASSOCIATION (CSA)
EACH PROVINCIAL PROGRAM
DEVELOPS ITS OWN POLICIES BUT
MUST MEET CSA STANDARDS FOR
ACCREDITATION
CANADIAN BLOOD SERVICES & HÉMA-
QUÉBEC ‘OPERATE’ THE SYSTEM

48. Next Steps
National Consensus Process
CST, CDTRP, Health Canada, CBS, CSA, CCCS

51. Template for Policy Revision
BLOOD DONATION ELIGIBILITY CRITERIA
RECENTLY REVISED
COLLABORATE WITH KEY PLAYERS TO
SHARE KNOWLEDGE AND BENEFIT FROM
LESSONS-LEARNED
UNDERSTAND THE RISK TOLERANCE
PROFILE AND MOTIVATIONS OF THE
DECISION-MAKERS

52. Group Discussion
• Who are the relevant stakeholders and decision-
makers in your area?
• How might you engage with them?
• What are relevant barriers or facilitators of
engagement?
• What are the motivations and needs of the decision-
makers in your area?

53. Questions