2. • What is Patient-Oriented Research?
• What is Patient Engagement?
• Guiding Principles
• What Patient Engagement is Not
• Core Beliefs
• Why We Should Engage & Levels of
Engagement
• Tools and Resources
• PREPPP Award
Today’s Discussion

3. • Carolyn Shimmin is employed by the
George and Fay Yee Centre for Healthcare
Innovation as the Patient and Public
Engagement Lead
Disclosure

4. What is Patient-
Oriented Research?

5. • 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
SPOR Definition of Patient-Oriented
Research
5

6. What is Patient
Engagement in Health Research?

7. “The meaningful and active involvement of
patients in the:
• Governance of research;
• Priority-setting of research;
• Conducting of research; and
• Knowledge Translation of research.”
What is Patient Engagement?
7

8. Research that is carried out “with” or “by”
members of the public rather than “to”,
“about” or “for” them.
What is Patient Engagement?
8

9. People with lived/living experience of a health
issue (including patients, informal caregivers,
families, friends and communities) having a
say in decision-making about the research
process.
What is Patient Engagement?
9

10. What Patient
Engagement is NOT

11. • People being recruited to a clinical trial or
other research study to take part in the
research
• People completing a questionnaire or
participating in a focus group as part of a
research study
• Science festivals open to the public with
debates and discussion about research
What Patient Engagement is NOT:
11

12. • Open House at a research centre where
members of the public are invited to find
out about research
• Raising awareness of research through
media such as television programs,
newspapers and social media
• Sharing research findings to participants,
colleagues or members of the public
What Patient Engagement is Not:
12

13. Guiding Principles
And Core Beliefs

14. • Inclusiveness
• Support
• Mutual Respect and
Partnership
• Co-building
• Co-learning
• Reciprocal
relationships
• Transparency,
honesty and trust
Guiding Principles
14

15. The engagement of patients in health
research will lead to:
• Improved health outcomes and an
enhanced healthcare system;
• Increase the quality, appropriateness,
acceptability, transparency and relevance
of research;
• Ensure that health research addresses
issues of importance to people with lived
experience of a health condition.
Core Beliefs
15

16. People who may not identify as “patient”
because:
• Unable to access healthcare system because
of geographical and/or systemic barriers
• Living with mental health or substance use
issues where taking up the label of “patient” is
associated with stigma
• Refuse to engage or prematurely exit
because of disrespectful or unresponsive
care
Excludes the Involvement of
Individuals
16

17. Valuing All Voices
17

18. Why Should I
Engage?

19. To help identify research priorities that
matter most to people living with the health
condition, as well as their informal caregivers,
families and communities.
Why Should I Engage?
19

20. To help shape and clarify research
questions so that they reflect the needs and
concerns of people living with the health
condition, as well as informal caregivers,
families and communities.
Why Should I Engage?
20

21. To help ensure the research methods
proposed for the study are appropriate,
acceptable and sensitive to the very real
context in which people with lived experience
live, work and play
Why Should I Engage?
21

22. To help ensure research uses outcomes that
have true meaning to the lives of patients,
caregivers, families and communities
Why Should I Engage?
22

23. To help ensure the language and content of
the information provided to participants in
studies (e.g. questionnaires,
patient/participant pamphlets, etc.) is
appropriate and accessible
Why Should I Engage?
23

24. To help increase participation in a research
study by:
• Making sure the research is appropriate
and acceptable to potential participants
• Improving the information provided so
people can make informed decisions
• Helping to include voices traditionally less
heard in research
Why Should I Engage?
24

25. To conduct data collection (e.g. co-
facilitating focus groups, interviewing peers)
in a way that will help put participants at ease
and provide more in-depth discovery
Why Should I Engage?
25

26. To interpret research findings from the
perspective of people with lived/living
experience and inform recommendations
that will help improve the lives of patients,
caregivers and communities.
Why Should I Engage?
26

27. A Special Note on Quantitative Research
“Statistics are powerful persuaders. As systematically collected
numerical facts, they do much more than summarize reality in
numbers. They also interpret reality and influence the way we
understand society. The researchers who create statistics leave
their mark on them – not just because people are biased in overt or
conscious ways, but also because social, cultural, economic, and
political perspectives infuse the research data even when we think
we are “just counting people.””
• Walter M. & Andersen C. (2013). Indigenous Statistics: A
Quantitative Research Methodology. pp. 7.

28. To help co-develop ways to share and
implement research findings with patients,
informal caregivers and communities
Why Should I Engage?
28

29. To identify a wider set of research topics
or new areas of research
Why Should I Engage?
29

30. To help ensure research reflects the
concerns, interests and values of the
public and that money and resources are
used efficiently
Why Should I Engage?
30

31. Levels of
Engagement

32. Levels of Engagement
32

33. Participatory Approaches
33

34. Tools and
Resources

35. Carolyn
Shimmin
Patient and Public
Engagement Lead
Patient & Public Engagement
Team
Ogai
Sherzoi
Knowledge Broker
Dr. Kate
Sibley
Director Knowledge
Translation

36. Monthly Lunchtime Learning Series

37. Free One Hour Consult and Research Team Support

38. Patient Engagement Blog Series

39. Online Patient Engagement Budget Builder

40. Methods of PE: A Guide

41. Readiness to Engage Workbook

42. Up-to-Date Counselling Resource List for PE

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

44. Incorporating Trauma-Informed Intersectional Analysis

45. Validating a Trauma-Informed Intersectional
Framework

46. Survey of Manitoba Perspectives

47. Questions?
47

48. Next Lunchtime Learning Session
48