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Why Patient Engagement is Imperative: Implications for research, healthcare, and ourselves


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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.

Published in: Health & Medicine
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Why Patient Engagement is Imperative: Implications for research, healthcare, and ourselves

  1. 1. Why patient engagement is imperative: implications for research, healthcare and ourselves by Maxime Lê (B.H.Sc.)
  2. 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. 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. 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. 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. 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. 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. 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. 9. The continuum of patient engagement Hampel & Ponterfact | 2018 | The Ottawa Hospital
  10. 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. 11. My experience as an advisor: the OR Black Box Project
  12. 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. 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. 14. Remember this?
  15. 15. 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!)
  16. 16. 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 ? ??
  17. 17. 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
  18. 18. 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!
  19. 19. 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
  20. 20. 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
  21. 21. 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!
  22. 22. 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
  23. 23. 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)
  24. 24. Canadian Cancer Survivor Network Contact Info 1750 Courtwood Crescent, Suite 210 Ottawa, ON K2C 2B5 Telephone / Téléphone : 613-898-1871 E-mail: or Website: Twitter: @survivornetca Facebook: Instagram: @survivornet_ca Pinterest:
  25. 25. 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
  26. 26. My contact info Maxime Lê • Telephone / Téléphone : 819-431-8600 • E-mail: • Website: 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!