Maxime Lê is a graduate of health sciences from the University of Ottawa that has worn many hats for many roles. Chief among them is being a patient advisor for The Ottawa Hospital. Having frequently been a patient and having a passion for health and healthcare, he decided to get involved at The Ottawa Hospital to help improve care, research and advocate for patients. Maxime, while sharing his hands-on experience and insights, answered the questions that healthcare providers, researchers, or prospective patient advisors may have, such as: ''What does it mean to be a patient advisor?'', ''Why is it important?'', and ''What impact does it have?''. The webinar was followed by an interactive question and answer session.

1. Why patient engagement is
imperative: implications for
research, healthcare and ourselves
by Maxime Lê (B.H.Sc.)

2. Presentation outline
● About me
● Patient advisory / advocacy
○ What’s the difference?
○ Case example
○ My experience
○ Cancer patient experiences
● Implications
○ For research
○ For healthcare
○ For ourselves
● Contact info
● Q&A

3. About me
Maxime Lê
- B.H.Sc. obtained April 2018
- M.A. Communication, 2020
Patient / health advisory and advocacy experience:
- Patient advisor at The Ottawa Hospital
- Spokesperson for Freeze the Industry
- Community leader for the University of Ottawa Heart
Institute and mental health services
Formerly employed at the Pinecrest-Queensway Community
Health Centre, currently employed at Ottawa Public Health, and
freelance consultancy for public and private groups

4. What’s the difference?
Advisory Advocacy
● Patients are partners and offer advice
on anything that affects their care
● Don’t usually work directly with
patients
● Often volunteers with local
community hospitals
● Patients play an active role in
representing their homologues and
protecting the rights of patients
● Tend to work directly with patients
● Organized into associations,
foundations, councils, etc.
Advisor AdvocatePatients

5. Case example
A hospital does not yet have a policy establishing smoking boundaries for smokers.
Where on the spectrum, does a patient belong, when performing these actions?
Advisor AdvocatePatients
Advisor AdvocatePatients
Advisor AdvocatePatients
● A patient with lung cancer creates
and shares a petition in favor of
the policy and presents it to the
hospital’s operating board.
● A patient reviews and comments
on the literature and signage that
will inform hospital-goers of the
incoming change.
● A patient enjoys a cleaner
airspace when trying to recover
from lung cancer.

6. My experience as an advocate
● Testified before the House of Commons’
Standing Committee for Health
● Help approve and pass Bill S-5
○ Regulates plain and standardized tobacco
packaging to protect potential youth
smokers
● Act as a spokesperson for Freeze the
Industry
○ A youth-led coalition that fights back
against big tobacco packaging
○ Worked with folks from the Canadian
Cancer Society

7. Advisory with The Ottawa Hospital
The program is 1 year old (!) and includes 140 volunteer patient
advisors contributing to The Ottawa Hospital.
There are 5 areas of focus:
• Staff education and training
• Patient and family education material
• Engagement in clinical and non-clinical processes
• Research
• Decision-making related to strategic direction impacting
clinical care
Managers get to know advisor interests and introduce them to
teams looking to engage patients, then send call-to-actions.
Say hi to Claudia everyone!

8. Definition of patient engagement
Patient Engagement is…
The meaningful and active collaboration of patients in research:
•Governance
•Priority-setting
•Conduct
•Knowledge translation
SPOR Patient Engagement Framework, 2014

9. The continuum of patient engagement
Hampel & Ponterfact | 2018 | The Ottawa Hospital

10. So… what do you do?
Depending on the skills you have, different opportunities are available,
or you can gain new skills in:
• Research, planning, design and implementation
– clinical trials, designing patient-centered research, publishing
research papers, advising on the delivery of a new program...
• Communication
– writing policy papers, being a spokesperson, doing some
community outreach, writing grant applications...
• Sit on or chair decision-making boards and committees
– patient board of a hospital, public health board of a city, get a
seat at an institution...
• Offer your perspective on anything related to health, healthcare
and patients. It affects everyone.
• Take on a leadership role by engaging fellow patient-advisors

11. My experience as an advisor:
the OR Black Box Project

12. Example: OR Black Box Project
Backgrounder
• An OR Black Box (ORBB) is being installed at one of the operating theatres at
The Ottawa Hospital
• An ORBB is like a black box inside an airplane. It records audio, video, patient
vital signs and environmental data for research purposes.
• Data is then analysed to improve medical practice, patient health outcomes,
and interdisciplinary communication.
Role as a patient advisor
• Consult on the entire project, from A-Z.
– Write research grant
– Write research paper
• Develop patient-oriented internal and external communications
– Collaborate to create a media or communications plan
– Become a spokesperson and be the face of patients for the project
• Figure out solutions to challenges or concerns that affect patients
– What about patient privacy and confidentiality? Where can patients get
more info? What are the benefits to patients? What are the risks?

13. How were we patient advisors engaged?
• Face to face meetings to increase productivity and build relationships
• Regularly kept up to date with project developments
• Barriers were reduced: parking / transportation covered, meals or snacks
provided, meeting times were accommodated
• Our opinions and ideas were considered legitimate and taken seriously
• Rewarded with personal satisfaction and potential co-authorships on
research papers
• Our impacts were concrete, material, and real

14. Remember this?

17. Perspectives from patient advisors with
cancer-related experience
Susan, as a patient advisor at the regional cancer centre, shares that :
• [They have] have sat on an interview panel for a senior leadership position within
the regional cancer centre
• Helped with staff orientation
• Sat on a committee to plan a new patient and family resource centre
• Contributed to a working group to reorganize a chemotherapy teaching module
• Been a member of an advisory committee asked to review new and/or revised
documents, instructions, and general information for clear language and target
audience sensitivity.
(Thank you for sharing Susan!)

18. Sometimes, the spectrum can get blurry
Advisor AdvocatePatients
● It gets easy to become passionate about what you’re
working on and take on an advocacy role, when we should
be advising.
● Remember the difference between advisory and advocacy -
and its OK to make mistakes!
“One day, during an advisor’s meeting, I got really passionate about palliative
care, especially for patients with cancer. I forgot about my role as an advisor,
and started to advocate for something better. I remember leaving the meeting,
telling myself that I had crossed a line.”
- A testimony from a cancer-patient advisor
? ??

19. Patient-oriented research?
• Patient-oriented research refers to a
continuum of research that engages
patients as partners, focuses on patient-
identified priorities and improves patient
outcomes.
• This research, conducted by
multidisciplinary teams in partnership
with relevant stakeholders, aims to apply
the knowledge generated to improve
healthcare systems and practices.
• Brings patients to the center and engages
all stakeholders.
SPOR Patient Engagement Framework, 2014

20. Implications for research
Did you know?
• In 2011, the Canadian government created the Strategy for
Patient-Oriented Research (SPOR), which launched in 2014
• Yet, less than 1% of published clinical trials contained critical
information on how patients were engaged in research
(Fergusson et al., 2018)
• Why?
– Little to no reporting
– Little to no guidance for researchers
• We need to start reporting
– And do not worry, there are dedicated resources to help you!

21. Then, what is the importance?
• Better quality research
• Improved health outcomes
• Enhanced patient
experience with the health
system
• Expanded applicability of
research
• Increased translation and
dissemination to patient
communities
• Accelerated uptake of new
practices
Monfaredi | 2018 | Ottawa Methods Centre | Ottawa Hospital Research Institute

22. Implications for healthcare
Why should healthcare feature more patient engagement?
• Patients offer important perspectives and insights
• Public trust and confidence
• Improved health care quality
• Improved patient experience
• Potential to get it right the first time
• Reduced (administrative, systemic) cost
• Improved safety
• Patients want to be partners and benefit personally from gaining knowledge and
supporting their community hospitals
• Pan-Canadian hospitals are facing difficult choices about healthcare priorities
• The Public is the main funder and user of healthcare, so patients become
empowered
Adapted with permission from Hampel & Ponterfact | 2018 | The Ottawa Hospital

23. Avoid tokenism!
● Do not involve patients just
for the sake of involving
patients, whether it is through
legal / political obligation
● Do not involve patients just to
meet requirements or fulfil
quotas
○ You will be left with
uninterested advisors
and deprived of valuable
information
● Patients want their
contributions to feel valued,
and their impact measurable
We are not coins you put in a slot
machine hoping to score a jackpot!

24. What’s in it for patients?
• Extremely valuable work / practical experience in a healthcare or research setting
• Community and resume building, all at the same time
• Provides an unmatched sense of pride and satisfaction
• Concrete contributions to the improvement of our healthcare and healthcare
system
• Legitimate input on research design and helping generate better health
outcomes
• Opportunities to develop (new) skills and expand your network
• Contributes to research literature
• Helps patients gain control and ownership of their health

25. Additional resources
• Institute for Patient- and Family-Centered Care
• The Canadian Foundation for Healthcare Improvement
• Health Quality Ontario
• Cancer Care Ontario
• Canadian Institutes of Health Research
• World Health Organisation
• Canadian Patient Safety Institute
• Patient-Centered Outcomes Research Institute
• INVOLVE (U.K.)
• Strategy for Patient-Oriented Research
• Ontario Strategy for Patient-Oriented Research Support Unit (OSSU)

26. Canadian Cancer Survivor Network
Contact Info
1750 Courtwood Crescent, Suite 210
Ottawa, ON K2C 2B5
Telephone / Téléphone : 613-898-1871
E-mail: jmanthorne@survivornet.ca or info@survivornet.ca
Website: www.survivornet.ca
Twitter: @survivornetca
Facebook: www.facebook.com/CanadianSurvivorNet
Instagram: @survivornet_ca
Pinterest: http://pinterest.com/survivornetwork/

27. We must be relentless in the pursuit of better.
THANK YOU!
for attending today’s webinar.
Special thanks to Claudia, Zarah, Sandy, Antoine,
Laurie, Aya, Nicole, Susan and Adnan at TOH
and Mona and Allison at CCSN

28. My contact info
Maxime Lê
• Telephone / Téléphone : 819-431-8600
• E-mail: mle094@uottawa.ca
• Website: www.maximele.com
Une version francophone de cette présentation est
aussi disponible. N’hésitez pas à me contacter
pour l’obtenir.
A francophone version of this presentation is
available in French upon request. Simply contact
me!