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E-takeout box for OSSU World Cafe 2 (Find and Seek: Matching Researchers and Lived Experience Partners)

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E-takeout box for OSSU World Cafe 2 (Find and Seek: Matching Researchers and Lived Experience Partners)

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This is the summary of conversations that took place during our second OSSU World Cafe conversation of 6 February 2026. You can click the link in the image to access the full "what we heard" document or click here: https://drive.google.com/file/d/1Q4TMa-7b-_JmIS8vtTliwmhL_szG7QtW/view

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Find and Seek: conversations on matching researchers and lived experience partners

Join us on February 6, 12:00 PM Eastern Time for the second session in a series of conversations that break down the silos in the patient engagement ecosystem. Join us to participate in frank, insightful conversations about the challenges that both people with lived experience (potential and already engaged) and research teams face in finding the people and teams to facilitate successful partnerships. How do researchers and lived experience partners find each other, who's hidden, and how do we balance bringing in new voices while not alienating experienced partners?

Registration is required and will close Feb 5. To register go to: https://us06web.zoom.us/meeting/register/tja_XdV9TCeTSBiW3D-_ww#/registration

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E-takeout box from OSSU World Café conversation #1 (10 December 2025) 

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E-takeout box from OSSU World Café conversation #1 (10 December 2025) 

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This is the summary of conversations that took place during our first OSSU World Café conversation on 10 December 2025.

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The summaries from Conversation 1 on meaningful patient engagement make reference to “Patient Partner” but I cannot identify with the word partner, I would prefer Patient, as in “Person/Patient who represents their own lived experience” (which is different from PWLE - person with lived experience) however I am aware there is debate about this among patients.

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During the first Conversation Session 1, I was asked "are you saying this as a patient or researcher?" and I think this topic should be discussed further. Some of my thoughts on this are:

• A patient can know or cite much research and still be speaking as a patient.

• A patient can lead or conduct research as a patient. The patient may position the research in a way that reflects their positionality or identity as a patient as opposed to as a researcher.

• Some researchers and health professionals say "I'm a patient too", but there is a difference between "I'm a researcher and I'm a patient too" and "I'm a patient and I'm doing research too." There are some nuances that could be brought to light related to this.

• If I am a patient who is undertaking a research project, what factors are important to consider? I think reflexivity is important here on the part of the patient doing the research as well as anyone else who is involved.

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Trauma Informed Engagement of Patient Partners

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Trauma Informed Engagement of Patient Partners

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Sometimes research questions are around conditions that are stigmatized or are with what some might call vulnerable populations. How can we engage partners appropriately so they feel heard part of the research team without them being retraumatized (or at least reducing the possibility)?

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Barriers to the implementation of  Learning Health System

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Barriers to the implementation of  Learning Health System

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I think it would be an added value to research about the barriers health care providers and health institutions are facing to implement the principles of a Learning Health System as it is presented in the LHS Framework.

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I would love to discuss how to get involved in partnering as an adult. I currently work within Child and youth research but I am 35 turning 36 next year, is there space in the adult world for me?

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Building Relationships with Indigenous Communities for Research Purposes

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Building Relationships with Indigenous Communities for Research Purposes

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I just received OCAP certification, but would like to learn from others who do research with First Nations to uphold ethics and respect. I am a new Patient Partner Researcher with interests in sepsis and CKD in Indigenous communities.

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What do they look like? How do they work? I’ve seen some examples but not a great review of what’s happening out there.

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It would be great to have a platform where patients can post their patient-identified research questions and get matched to researchers interested in the same questions. There is one for rare disease patients in Europe, but there should be one for patients regardless of whether their condition is a rare disease.

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I would like there to be a web-based database of clinical trials in Canada where patients can subscribe by keywords for alerts, for example to get alerts about trials related to their condition.

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Evidence of impact and influence on practice

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Evidence of impact and influence on practice

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Why the evidence on PATIENT ADVISORY COUNCILS demonstrates a lack of impact for improving the patient experience (yet remains a major structure in healthcare)? (paraphrased from Ted Ball on LinkedIn)

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Why organizations don’t fully utilize PATIENT EXPERIENCE CO-DESIGN — which always results in a surge in Patient and Staff Satisfaction Rates? (from Ted Ball LinkedIn)

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How can people with lived experience engage more meaningfully with researchers?

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Any advice on preparing CVs for grants?

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The file above provides an orientation to using Padlet (this site).

Please add topics you want to discuss by clicking on the circle with the + in the bottom right hand corner. You can then provide information about the topic as well as more details. You can also give a thumbs up (or thumbs down) for topics that have been proposed. We will work with a team of patients, researchers, and other interest holders to select the topics that appear to have most interest and these will form the basis for our future events. We even added a few ideas to get you started.

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What are the options for compensation, and how does compensation work? What are the implications of receiving compensation?

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I'm interested in a conversation about: Finding opportunities

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I'm interested in a conversation about: Finding opportunities

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How can lived experience partners get involved as research partners (and how can research teams find lived experience partners?)