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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).
I help oversee patient engagement in research initiatives across UHN. I collaborate with people with lived experience, scientists, and research staff to design, implement, and evaluate structures and processes related to patient engagement in research at UHN.
Ask me about opportunities to get involved!
I collaborate with internal and external individuals and groups to create communication materials, educational resources, and other learning opportunities for researchers and staff. I am also the lead of the PiPER Community of Practice.
Ask me about our Community of Practice & Newsletters!
I facilitate the engagement of people with lived experience to contribute to PiPER activities. This includes collaborating to create the University Health Network Patient Engagement in Research Toolkit, the PiPER Research Day program, compensating standards, amongst others.
Ask me about Research Day & our Tools!
I am the Manager of the Toronto Rehab Research Central Recruitment department which provides recruitment services for studies that involve inpatients across Toronto Rehab. In my role on the PiPER team, I act as the Liaison with UHN Digital and Technology initiatives that enable patient engagement in research. Since 2022, I have been part of the PiPER team conducting environmental scans and focus groups with staff and people with lived experience in preparation for the Strategic Plan Launch.
I contribute to work on the Rick Hansen Spinal Cord Injury Registry and the PiPER team. In my role on the PiPER team, I support the digital implementation of initiatives that enable patient engagement in research.
Ask me about all things PiPER digital and technology!
I am the Manager of the Research Quality Integration department 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.
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.
Register here for the next session on September 27th. The topic of our next discussion is on a trauma-informed approach to patient engagement in health research.
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:
|Session||Research Area of Engagement||Presentation||1-Page Summary|
|April 2023||Heart Failure|
|May 2023||Spinal Cord Injury|
|June 2023||Spinal Cord Injury||Coming Soon!|
|July 2023||Primary Sclerosing Cholangitis|
We are excited to announce the launch of our inaugural PiPER Research Day on October 5, 2023! PiPER Research Day will be offered virtually and in-person at Hart House at the University of Toronto (St. George Campus). PiPER Research Day will feature keynotes, panels, virtual poster sessions, interactive workshops, storysharing sessions, and an art exhibit on the following themes:
The program also includes the launch of our Patient Engagement in Research Toolkit. Check out the program here.
PiPER Research Day is an opportunity for anyone working in health research who is interested in achieving the common goal of building relationships with, and engaging patients, family members, and caregivers in research. PiPER Research Day may be of particular interest to:
PiPER Research Day is a unique free event that provides an opportunity to share, network, and gain practical information related to patient engagement in research.
Please note in-person registration will be limited. There are no fees to register and attend.
Please register here!
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!
|Summer 2022||Spring 2023||Summer 2023||Fall 2023|
|Coming Soon!||Coming Soon!|
Have a story, opportunity, or resource to share? Email us at firstname.lastname@example.org
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|
Click on the button below to learn more information about our previous calls for proposals