Table 3b.

Influence of patient engagement in the design stage

PE in the design stage (role of stakeholders during this stage)	Influence of PE on the research (impact on the research)	Critical Outcomes of Research Engagement (CORE) framework themes
PRPs in both groups shared their lived experience, questions and concerns “I think as a recipient of biologic treatment my question is, do I have to take this forever? Are there other options? What does it look like when tapering off? What do I need to know to make me feel comfortable that I can actually make a decision?” PRP	The diverse PRPs’ lived experience helped gain a deeper understanding about tapering of biologics, and what was important to consider while designing and conducting the study from a patient perspective “I think this (patient lived experience) has helped to shed light on the patient perspective and potentially tailor study design and approach in a patient-focused way.” PRP “Provided a starting point for our discussions as a group, as well as guided us in preparing the interview/focus group guides.” PRP	(1) Patient-centered (2) Meaningful (3) Legitimate
Both groups’ members operationalized ‘tapering’ for their qualitative group project “I asked how we are defining 'tapering' and described the various types of tapering I am familiar with (as a patient with IBD) and that we would need to be sure we define what we mean by tapering. I also suggested that, in my experience, tapering is generally not supported by IBD care teams due to insufficient research.” PRP	Discussions about the research question resulted in developing a patient-friendly project title and design/approach that was rigorous, resonated with the patient experience and aligned with the purpose of the study. Group members obtained more clarity on the target study population to include in the qualitative study design, and the approach to capture attributes relevant to the community. It also enabled the development of the project materials “Doing so (defining the question) enabled us to develop project materials much more easily, as we had a specific goal to work towards.” PRP “I just wanted to chime in from a patient perspective, I think this title works in terms of just capturing what we want, and that is people that are on biologics. This title is very user friendly, you have people who are happy and biologics, and you put them in a situation where you ask them about it and they can start thinking about it for the future.” PRP “I think (defining the question), this helped the team focus on some of the nuances patients may experience when contemplating the tapering question. Our team decided to complete a literature review to better understand the topic and what research is already out there.” PRP	(1) Patient-centered (2) Meaningful (3) Team collaboration (4) Understandable (5) Rigorous (6) Integrity/adaptable (7) Legitimate
All group members in both groups discussed and determined the study design and approach “I really like the idea of looking at both clinician and patient perspectives because I think clinicians will have certain attributes that are important in their mind and patients will have different ones and combining both of those types of information might make it more successful to like attempt tapering in the future, like if clinicians can buy in and there's a study saying here's what clinicians said was important here's what patients said is important and then move forward like that I think it'd be great contribution.” PRP “Exploring the ‘why’ aspect is super important because, if it's just because they heard from a neighbor or a friend, that this is a poison that they're getting, maybe then it's better to sort of clarify the myth or because people are snowbirds and they're on IV therapy and they want to go down to the States.” Clinician	Collaborative decisions regarding the study design and approach including the inclusion–exclusion criteria, and how to approach data collection (where not to collect data, what data to collect and from whom) resulted in an evidence-based, rigorous, feasible, and ethical design and approach that was relevant, meaningful, and aimed to benefit the end-users; patients, families, and the broader community “(Collaborative decision making) ensured that the research conducted was evidence-based and follows standards, while taking patient needs into consideration.” Researcher “(Decision making with PRPs) has helped the team get on the same page towards figuring out recruitment, study design and be aware of potential pitfalls (e.g. potential issues with recruiting from gastroenterologists’ clinics)” PRP “Participating in conversations that focused on defining the inclusion criteria, and conversations about overall project plan, made sure we were consistent, and helped us to minimize biases.” Researcher	(1) Patient-centered (2) Meaningful (3) Team collaboration (4) Understandable (5) Rigorous (6) Integrity/adaptable (7) Legitimate (8) Feasible (9) Ethical and transparent (10) Timely
The PRP Lead and the PRPs in the RLG were engaged in the literature review and received some training in the nuances of a rapid review. The researchers led this activity. Clinicians provided directions on what literature to look for and where and shared some articles “(Name of the researcher) and I reviewed the search information and determined that we have the articles that we need to collate and identify the attributes for the interview guides.” PRP “So, let's say I’ve been on ANT-TNF for five years, I feel good, everything's good, my disease is under control, what's the likelihood that I will stop and restart, that I am going to develop antibodies. I’m not sure if we have that information, it might be better, you know to look at the rheumatology literature, because you know they more commonly start and stop you know Anti TNFs.” Clinician	The joint literature review ensured the inclusion of the patient-elucidated terms in the search; in producing results in a lay language, and in a greater understanding of the patient lived experience that was used to design the study in the RLG and to develop appropriate guides, and analytical templates in the PLG “I think we all learned a lot about the topic, although the clinical articles seemed to reinforce the dominant concern that tapering of biologics is not a viable option in patients with IBD.” PRP “helped guide focus groups discussions.” Researcher “The attributes that were identified in the literature search were the foundation of the framework analysis template we used to begin the process of analysis.” PRP	(1) Patient-centered (2) Meaningful (3) Team collaboration (4) Understandable (5) Rigorous (6) Legitimate
All the study materials including data collection tools were developed by the PRP lead and PRPs in the PLG, while some of the study materials including data collection tools were developed by the PRPs and some by the researchers in the RLG. “I assisted in the development of the focus group and interview guides, and helped designing the recruitment flyer. I also contributed to reviewing and revising study materials as needed.” PRP “I volunteered to work on the interview guide, as it is my main area of experience. Others worked on and shared recruitment materials…” Researcher	Engagement of PRP in developing/reviewing the study materials ensured that these were appropriate for a diverse patient group, user friendly (increased readability), ethical and transparent, easy to administer, and effective during data collection “As a facilitator for the upcoming focus groups and interviews, it makes it easier to conduct these processes when I have been involved in planning for them.” PRP “... in response to concerns in the group we tried to create wording which would not imply that the idea of tapering as a treatment was endorsed or supported by the group…” Researcher “Hopefully made the recruitment material stronger.” PRP	(1) Patient-centered (2) Meaningful (3) Understandable (4) Legitimate (5) Ethical and transparent

PE Patient engagement, PLG patient research partner-led group, PRP patient research partner, RLG academic researcher-led group