The document discusses the importance of patient engagement in health research, defining it as the meaningful involvement of patients in various stages of research. It outlines the benefits of involving patients, such as improved outcomes and research relevance, and categorizes levels of involvement from consultation to full partnership. Additionally, it provides practical tips for effectively engaging patients, emphasizing the need for clear expectations, addressing barriers, and ensuring safety and inclusivity.

1. PATIENT ENGAGEMENT IN HEALTH RESEARCH:
MOVING FROM PARTICIPANTS TO PARTNERS
Carolyn Shimmin

2. Agenda
• What is and isn’t Patient Engagement?
• Why Involve Patients in your Research?
• What are the Levels of Patient Engagement?
• Assessing Expectations and Willingness
• Opportunities to Engage throughout the Research Process
• Tips and Tricks When Planning to Engage

3. 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; AND
• Aims to apply the knowledge generated to improve
healthcare systems and practices.

4. What is Patient Engagement in Health Research?
“the meaningful and active involvement of patients in the:
• Governance of research;
• Priority-Setting of research;
• Conducting of research; and
• Knowledge Translation of research”
– CIHR, SPOR definition

5. PATIENT ENGAGEMENT (PE)
INVOLVE defines public involvement in research as:
research that is carried out “with” or “by” members of the
public rather than “to,” “about” or “for” them.

6. PATIENT ENGAGEMENT (PE)
• People, informal caregivers and communities with lived
experience of a health issue(s) having a say in decision-
making about the research process.

7. Excludes the Involvement of Certain Individuals
Who may not identify as “patients” because:
• Unable to access the healthcare system because of geography
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 unresponsive or
disrespectful care.

8. Core Belief
The involvement of patients in health research will lead to:
• Improved health outcomes and an enhanced health care
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.

9. Patient Engagement is NOT:
• People being recruited to a clinical trial to take part in the study;
• People completing a questionnaire/survey or participating in a focus
group as part of a research study;
• Science festivals open to public with debates and discussion about
research;
• Open day at a research centre where members of public are invited to
find out about research;
• Raising awareness about research through media; and
• Dissemination of research findings to public.

10. WHY SHOULD I ENGAGE?

11. Why Involve Patients and the Public in Research?
• Helping to identify research priorities
• Helping to shape and clarify the research questions
• Helping to ensure the methods/design proposed for the
study are appropriate, acceptable, and sensitive
• Helping to ensure research uses outcomes that have
meaning
• Helping to ensure the language and content of the
information provided to participants in studies is appropriate
and accessible

12. Why Involve Patients and the Public in Research?
• Helping to increase participation/recruitment in a research
study
• Identifying a wider set of research topics or new areas of
research
• Interpreting research findings
• Ensuring research reflects the concerns, interests and
values of the public and that money and resources are used
efficiently

13. Levels of patient and public involvement
1. Consultation – obtain feedback or input from patients about different decisions in the research process
2. Involvement – working directly with patients and/or members of the public throughout the research process
— especially at the planning stage
3. Collaboration – actively partnering with patients and/or members of the public in every aspect of the
research process (shared decision-making)
4. Patient & public-directed – this is when patients and/or members of the public actively control, direct and
manage the research process.

14. Assessing Expectations and Willingness to Engage
Internal
• What is the minimum required level of engagement for this grant
application?
• To what extent does the research team believe that engagement will
improve the outcome of the research?
• What is the potential for patients to influence decision-making within
the research process?
• What is the likelihood the research will fully consider patient input?
• What resources are likely to be available to support PE?

15. Assessing Expectations and Willingness to Engage
External
• Previous history of engagement
• What inequities exist in relation to the health issue being
researched? Who is affected differently? Who has different
access to services?
• What are the values and expectations?
• What level do people expect to be engaged?
• How would people prefer to be engaged?

16. Having a Clear Understanding of the Purpose
• Going beyond “We would like to get peoples’ input.”
• What is it intended to achieve and how the population of
interest might contribute to decision-making with regard to
the research process
– Will they have a say in research priorities, questions, methods,
design, outcome measures, interpretation of findings,
dissemination of results?

17. PATIENT ENGAGEMENT TIPS AND TRICKS

18. Start Early…
• Involve people as early as possible – consider involving
people in the identification and prioritization of the research
topic and the development of the research question

19. Understand Who You Want to Engage…
• What current health inequities exist in the area of research I
will be looking at?
• Are people living with this issue differently affected
dependent on the social locations in which they inhabit?
• Do people living with this health issue face different
geographical and systemic barriers to accessing healthcare
services?
• How will I make sure diverse perspectives are represented in
decision-making processes?

20. Address Barriers/Challenges to Engagement
• Language
• Low-literacy
• Visual or hearing impairments
• Learning difficulties
• Chronic health conditions
• Geographical
• Systemic

21. Be Clear About Expectations
• Why are you asking people to get involved?
• What is expected of them?
• How much of a time commitment will it be?
• What can they expect from you?
• What are the aims of the project?
• What are everyone’s expectations?
• Where will people have a say in decision-making?

22. 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.

23. Build a Budget for Involvement
• Compensation for contribution to research project
• Transportation
• Caregiving
• Parking
• Food and beverages
• Accessible space rental
• Care attendants
• Supports (i.e. Elders, counselors, etc.)

24. Relationship Building
• Trust
• Respect
• Compassion
• Self-awareness

25. Group Discussion Questions
Thinking about your Quick Strike project:
• Where are there opportunities for people with lived
experience of a health issue, informal caregivers, family,
friends and/or communities to be involved in decision-
making around the research process?
• At what level of involvement?
• What would be the purpose of involvement?
• Who would you involve and what resources would you need?

26. Questions?

27. Carolyn Shimmin
Patient and Public Engagement Lead
Knowledge Translation platform
George and Fay Yee Centre for Healthcare Innovation
(p): 204-930-6089
(e): cshimmin@exchange.hsc.mb.ca
(t): @CarolynShimmin