Objective To develop best practice statements for the provision of virtual care in adult and pediatric rheumatology for the Canadian Rheumatology Association's (CRA) Telehealth Working Group (TWG). Methods Four members of the TWG representing adult, pediatric, university-based and community rheumatology practices defined the scope of the project. A rapid literature review was conducted between April-May 2021 of existing systematic reviews, policy documents and published literature and abstracts on the topic. The review informed a candidate set of 7 statements and a supporting document. The statements were submitted to a 3-round (R) modified Delphi process with 22 panelists recruited through the CRA and patient advocacy organizations. Panelists rated the importance and feasibility of the statements on a Likert scale of 1-9. Statements with final median ratings between 7-9 with no disagreement were retained in the final set. Results 21 (95%) panelists participated in R1, 15 (71%) in R2 and 18 (82%) in R3. All but one statement met inclusion criteria during R1. Revisions were made to 5/7 statements following R2 and an additional statement was added. All statements met inclusion criteria following R3. The statements addressed the following themes in the provision of virtual care: adherence to existing standards and regulations, appropriateness, consent, physical examination, patient-reported outcomes, use in addition to in-person visits, and complex co-management of disease. Conclusion The best practice statements represent a starting point for advancing virtual care in rheumatology. Future educational efforts to help implement these best practices and research to address identified knowledge gaps are planned.

Background Studies have highlighted common challenges and barriers to patient engagement in research, but most were based on patient partners' or academic researchers' experiences. A better understanding of how both groups differentially experience their partnership could help identify strategies to improve collaboration in patient engagement research. Aim This study aimed to describe and compare patient partners' and academic researchers' experiences in patient engagement research. Methods Based on a participatory approach, a descriptive qualitative study was conducted with patient partners and academic researchers who are involved in the PriCARE research programme in primary health care to examine their experience of patient engagement. Individual semi‐structured interviews with patient partners (n = 7) and academic researchers (n = 15) were conducted. Academic researchers' interview verbatims, deidentified patient partners' summaries of their interviews and summaries of meetings with patient partners were analysed using inductive thematic analysis in collaboration with patient partners. Results Patient partners and academic researchers' experiences with patient engagement are captured within four themes: (1) evolving relationships; (2) creating an environment that fosters patient engagement; (3) striking a balance; and (4) impact and value of patient engagement. Evolving relationships refers to how partnerships grew and improved over time with an acceptance of tensions and willingness to move beyond them, two‐way communication and leadership of key team members. Creating an environment that fosters patient engagement requires appropriate structural support, such as clear descriptions of patient partner roles; adequate training for all team members; institutional guidance on patient engagement; regular and appropriate translation services; and financial assistance. For patient partners and academic researchers, striking a balance referred to the challenge of reconciling patient partners' interests and established research practices. Finally, both groups recognized the value and positive impact of patient engagement in the programme in terms of improving the relevance of research and the applicability of results. While patient partners and academic researchers identified similar challenges and strategies, their experiences of patient engagement differed according to their own backgrounds, motives and expectations. Conclusion Both patient partners and academic researchers highlighted the importance of finding a balance between providing structure or guidelines for patient engagement, while allowing for flexibility along the way. Patient or Public Contribution Patient partners from the PriCARE research programme were involved in the following aspects of the current study: (1) development of the research objectives; (2) planning of the research design; (3) development and validation of data collection tools (i.e., interview guides); (4) production of data (i.e., acted as interviewees); (5) validation of da...

BackgroundPatients and stakeholders are increasingly engaging in health research to help address evidence‐practice gaps and improve health‐care delivery. We previously engaged patients, caregivers, health‐care providers (HCPs) and policymakers in identifying priorities for chronic kidney disease (CKD) research.ObjectiveWe aimed to explore participants' views on the research priorities and prioritization process 2 years after the exercise took place.DesignIn this qualitative descriptive study, individual interviews were conducted and analysed using an inductive, thematic analysis approach.Setting/participantsParticipants resided across Canada. We purposively sampled across stakeholder groups (CKD patients, caregivers, HCPs and policymakers) and types of engagement (wiki, workshop and/or steering committee) from the previous CKD priority‐setting project.ResultsAcross 23 interviews, participants discussed their research priorities over time, views on the prioritization process and perceived applicability of the priorities. Even though their individual priorities may have changed, participants remained in agreement overall with the previously identified priorities, and some perceived a distinction between patient and HCP priorities. They tended to balance individual priorities with their broader potential impact and viewed the prioritization process as systematic, collaborative and legitimate. However, participants acknowledged challenges to applying the priorities and emphasized the importance of communicating the project's outcomes upon its completion.ConclusionTwo years after engaging in CKD research prioritization, stakeholder participants remained in agreement with the previously identified priorities, which they felt reflected group deliberation and consensus. Rapport and communication were highlighted as key elements supporting effective engagement in research prioritization.

This is the introductory paper in a collection of four papers on the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance, a pan-Canadian research initiative that was funded by the Canadian Institutes of Health Research in September of 2017. Here, we introduce the SPOR enterprise in Canada, provide a rationale for the creation of the SPOR Evidence Alliance, provide information on the mandate and approach, and describe how the SPOR Evidence Alliance adds to the health research ecosystem in Canada and beyond.

Background In the past decade, patient-oriented research (POR) has been at the forefront of healthcare research in Canada because it has the potential to make research more meaningful and relevant to patient needs. Despite this growing emphasis on and expectation to conduct POR, there is limited guidance about how to apply POR in practice. To address this capacity building need, the Knowledge Translation (KT) Program and patient partners co-designed, delivered, and evaluated Partners in Research (PiR), a 2-month online course for patients and researchers to collectively learn how to conduct and engage in POR. Methods PiR was delivered to 4 cohorts of patients and researchers between 2017 and 2018. For each cohort, we evaluated the impact of the course on participants’ knowledge, self-efficacy, intentions, and use of POR using surveys at 3 time points: baseline, post-course and 6-months post-course. We also monitored the process of course design and delivery by assessing implementation quality of the PiR course. Participants were asked to rate their satisfaction with course format, course materials, quality of delivery and their level of engagement via a 7-point Likert scale in the post-course survey. Results A total of 151 participants enrolled in the PiR course throughout the 4 cohorts. Of these, 49 patients and 33 researchers (n = 82 participants) consented to participate in the course evaluation. Process and outcome evaluations collected over a 9-month period indicated that participation in the PiR course increased knowledge of POR concepts for patients (p < .001) and for researchers (p < .001) from pre-course to post-course timepoints. Likewise, self-efficacy to engage in POR increased from baseline to post-course for both patients (p < .001) and researchers (p < .001). Moreover, participants reported high levels of satisfaction with content, delivery and interactive components of the course. Conclusions The PiR course increased capacity in POR for both researchers and patients. This work enhances our understanding of how to design useful and engaging education opportunities to increase patient and researcher capacity in POR.