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University Health Network
550 University Ave, 11-151
Toronto, Ontario M5G 2A2
Pride in Patient Engagement in Research (PiPER) is a strategic research initiative at University Health Network (UHN) that officially launched in February 2022. The PiPER initiative is one of the priorities of the UHN Research Strategic Plan 2019-23, under the pillar engage every patient to strengthen our learning health system.
Our vision is a future where UHN is an international exemplar for the participation of patients, families, and partner organizations in our research. This engagement is authentic, accountable, transparent, and responsive and predicated upon our mission.
To make engaging patients, families, and care partners in research a new culture that can enhance health research, outcomes, and care experiences for all.
Our goal is to build organizational structures and technology that promote and embed the engagement of people with lived experience in our research. Our aim is for that engagement to be authentic, accountable, transparent, and responsive.We aim to:
We have established the structure below to oversee and support the PiPER vision:
Our team members help support the day to day activities of PiPER:
I am the Toronto Rehabilitation Institute/ University of Toronto Chair in Spinal Cord Injury (SCI) Rehabilitation, Professor in the Department of Medicine at the University of Toronto, Medical Director of the Spinal Cord Rehabilitation Program and Senior Scientist at KITE Research Institute within University Health Network (UHN). I also lead the PiPER initiative, Chair the PiPER Steering Committee, and sit on the Board of Directors for the Ontario Strategy for Patient-Oriented Research SUPPORT Unit (OSSU).
Curtis Black is a Research Associate with the PiPER team and has been proud to be part of this initiative since September 2022. Curtis is a sixth-generation Canadian with ancestors from Northwestern Europe. He has lived in various cities throughout Ontario: Pickering, Bowmanville, Ottawa, and Kingston. He is now living in Toronto where he enjoys spending time kayaking around Humber Bay in warmer weather and taking in the theatre scene during the colder months.
Curtis attended the University of Ontario: Institute of Technology where he completed an Honour’s Bachelor of Health Science in Health Science, specializing in Human Health with a minor in Forensic Psychology. While working at Queen’s University he built his skills in clinical research, research administration, and project management, which he uses to further the goals of patient engagement in research at UHN. He currently contributes to PiPER Research Day planning, digital initiatives for integrating PiPER values, and working groups facilitating financial compensation for patient partners.
I am the Senior Manager of Clinical Research Quality and Compliance where I provide leadership in the planning, conduct and reporting of quality and risk management activities within UHN Research. In my role on the PiPER team, I provide strategic support, facilitate collaborations, and advise on UHN policy and standards, developing and delivering training, and performing internal quality audit and compliance activities to ensure we meet the expectations of our external funders, regulators and community for high quality research at UHN.
I am a Research Quality Associate and provide educational programs for UHN quality initiatives and support the professional practice portfolio. In my role on the PiPER team, I help find integrative ways to engage patients in the UHN research enterprise. I also work with people with lived experience, staff, and researchers to create educational videos about research, patient engagement in research, and related topics.
Ask me about our educational videos!
I am an analytical chemist by training, however living with rheumatoid arthritis and osteoarthritis has profoundly impacted my career. In my role with the PiPER team, I am helping set up some of the foundations related to patient engagement in research at UHN. Specifically, I am contributing to the development of role descriptions for patient partners, establishing a patient engagement community of practice, and facilitating work related to other patient engagement events.
Anisa Morava, BSc, MA, PhD (she/her)
PiPER Team Member
Anisa Morava is a Research Associate I - Patient Engagement at UHN. Anisa arrived in Hamilton, Ontario, Canada in 2001 from Japan where she was born to Albanian parents and spent her formative years. Anisa learned English at the age of five. She has had the pleasure of living in a few different cities in Ontario, including Guelph and London and is now living in Toronto.
Anisa completed her undergraduate studies in Psychology, Neuroscience and Behaviour at McMaster University and her Master’s and PhD in Kinesiology at Western University. During her time at McMaster, she explored the use of Goal Management Training as an executive function intervention in Acquired Brain Injury. During her graduate studies, she examined the use of acute exercise-based intervention to promote cognitive functioning and stress reduction in young adults. She has experience with systematic reviews and exercise-based intervention studies. She is passionate about patient engagement and looks forward to building our community of practice at UHN.
Julie Vo, BSc, MSc (she/her)
PiPER Team Member
Julie Vo is a Research Associate at the University Health Network, supporting the Pride in Patient Engagement in Research (PiPER) initiative. Julie is a first-generation Canadian who is proudly connected to her Vietnamese roots. In the heart of her family home in Ottawa, she often spends her time in the kitchen, experimenting with new recipes. You’ll now find her discovering hidden gems in Toronto or venturing into the diverse culinary landscape of the city.
Julie attended McMaster University for her undergraduate studies where she completed a Bachelor of Science degree in Life Sciences. With a growing passion for improving the healthcare landscape, she obtained her Master of Science degree in Health Promotion from Western University. Her research expertise lies in knowledge translation, digital health, and implementation science. Julie currently leads the development of educational resources aimed at fostering health equity, promoting quality education, and creating economic opportunities for diverse communities. Her goal is to bridge the gap between research, practice, and public understanding of patient engagement in research for individuals from all walks of life.
Erin Smith, BSc, MPH (she/her)
PiPER Team Member
Erin Smith is a Research Associate on the Pride in Patient Engagement (PiPER) team at the University Health Network. Erin is a fourth-generation Canadian with ancestors of British and Greek-Macedonian heritage. She is proud to have called Toronto, or Tkaronto, home for most of her life. Erin enjoys spending time year-round in Ontario’s wilderness and provincial parks, specifically Algonquin Park and Haliburton.
Erin attended the University of Guelph for her undergraduate studies where she completed a Bachelor’s of Science in Biomedical Science. She obtained her Master’s of Public Health from McMaster University, where she conducted a project that engaged community members to improve communication and public messaging during the COVID-19 pandemic. Erin’s previous work experience has included a focus on health promotion and the social determinants of health, as she worked at a local public health unit to help support equity-deserving populations in Northern Ontario. She is passionate about patient engagement and developing equitable research processes and health outcomes for all patient populations served by UHN.
Concepts and terms have different meanings to different people. The definitions below can be used in your work on patient engagement in research at or with UHN. This can help make sure that everyone has a common understanding of the words that are being used.
A patient partner is a person with a personal experience of a health condition and family member or care partner. They may live with a condition or have had experiences interacting in the health system. Patient partners:
Other terms you may also hear to describe a patient partner include person with lived experience (sometimes shortened to “PWLE” or “PLEX”), person with lived expertise, or patient research partner.
Patient engagement is meaningful and active collaboration with patients as partners in the research. Sometimes you may hear the term patient and public involvement (shortened as "PPI") used instead.
Patient engagement in research refers to engaging patient partners in different ways throughout the research process so they can provide their own lived experiences, insights, and perspectives. The intent of the engagement is to improve the research and the relevance of the research results. Patient engagement in research does not mean that the overall approach to research needs to change, instead it means bringing patient partners to the team so they can contribute in ways that complement the expertise and knowledge of the other research team members.
A healthcare system in which knowledge generation processes are embedded into daily practice to improve research, care, and communication. A learning health system continuously collects and analyzes data to generate knowledge, engage partners, and enable informed and timely decisions.
A Community of Practice is a group of people who have common interests and goals related to a topic and come together to learn and share information and resources.
PiPER's Community of Practice is held virtually every last Wednesday of the month from 12:00pm - 1:00pm EST. The goal of the Community of Practice is to help build knowledge and capacity to support a culture of meaningful patient engagement in research at University Health Network.
Each session offers an opportunity to share knowledge, practices, and resources through presentations, facilitated discussions, and reflective exercises. Joining the Community of Practice sessions can help foster relationships, collaboration, and learning with scientists, research staff, trainees, people with lived experience, and partners from affiliated organizations.
Catch up on our previous sessions by clicking on the image to watch the presentation recording or a summary of the key discussion points and resources:
|Research Area of Engagement
|Spinal Cord Injury
|Spinal Cord Injury
|Primary Sclerosing Cholangitis
|Health accessibility for artists
|Health Equity in homelessness
|Plain Language Summaries of Research
The inaugural PiPER Research Day was held on October 5, 2023! The hybrid event featured keynotes, panels, virtual poster sessions, interactive workshops, storysharing sessions, and an art exhibit on the following themes:
Missed the event? Check out the different sessions that were recorded at PiPER Research Day below:
The PiPER Team has launched a toolkit about patient engagement in research for UHN scientists, research staff, and people with lived experience. Watch the short video to learn more about what you will find in the toolkit!
|A template to help plan engagement
|A template to help implement engagement
|CIHR PER & EDI summary
The PiPER team creates short videos to help educate and share information about topics related to patient engagement in research.
Click the icon to watch the short youtube video!
|How to write a plain language summary
|What is patient engagement in research
Click on the button below to learn more information about our previous calls for proposals
The PiPER team sends out quarterly newsletters sharing updates from our work, opportunities to be engaged, and resources related to patient engagement in research.
Check out our previous issues below!
Have a story, opportunity, or resource to share? Email us at firstname.lastname@example.org