OSSU World Café conversation series: 2026-2027 by Stuart Nicholls

Padlet orientation

snicholls27 — 2026-09-22 16:13:37 UTC

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.

About the OSSU World Cafe Series

snicholls27 — 2026-10-15 14:43:21 UTC

This isn't a series of talks TO you, this series is about REAL conversations on topics YOU want to discuss. To shape the OSSU World Café conversations event series we would like to know what topics YOU want to discuss by allowing YOU to comment and post to the board. This space is for everyone - patients, families, caregivers, researchers, research staff, patient engagement experts, policymakers - to have honest conversations and break down silos

Distinction between Research Volunteers and Advisors

2026-10-22 18:29:54 UTC

What is the Distinction between Research Volunteers and Advisors ?Submitted by: Michelle Quinlan and Dalya Kablawi (Sick Kids)

Dealing with conflicts on teams

2026-10-26 11:58:52 UTC

How do you deal with conflict on research teams and make sure communication doesn't break down or get forgotten? How do teams set up de-escalation pathways for patient partners to use? resources or training you recommend?

AI in patient engagement

2026-10-26 12:00:20 UTC

Is there any ways that research staff have automated things or decreased time to do tasks to be more efficient? For example automated reminders to reach out to patient partners, automated eval survey. Things that don't impact the quality of engagement

Evaluating progress and status of patient partnership over course of a project

2026-10-28 14:31:23 UTC

What are some effective ways people have found to track the progress and impacts of patient partnerships in research projects? I am curious to hear any creative reporting or demonstration tools people have seen or are using. Do you ask the patient partner to report on their experience? Just the research team? How do you get people to describe the tangible impacts a patient has had on the project?

Compensation for Patient Research Partner/Advisers

2026-10-28 14:52:18 UTC

The importance of patient research partners being compensated. Securing funding for all of team and project including PRP

Community of Pratice

2026-10-28 20:13:16 UTC

Let's talk about moving family engagement from 'transactional to relational,' as Sue Robin's would say! I want to discuss building meaningful engagement that moves from episodic, grant/time bound to sustained, nurtured partnerships over time.

Patient selection

2026-10-30 23:38:07 UTC

I am interested in discussing norms for selecting patients to be involved or selecting patient partners. When is it appropriate or not appropriate to ask patients to submit a CV? When should selection be based on best fit versus first-come-first-serve versus randomly selected? How can “you were not selected” messages be improved or mitigated?

How do you evaluate patient engagement?

2026-11-02 20:07:57 UTC

Interested in exploring how organizations evaluate patient engagement. Do you do one-time things or only long-term projects? What tool do you use for different things (e.g. research vs education)? How do you communicate feedback to both parties in a way that does not cause conflict and makes people feel comfortable being honest in the feedback they provide?