“Can I go to Glasgow?” Learnings from patient involvement at the 17th Congress of the International Society for Peritoneal Dialysis (ISPD)

Abstract

Background: Recognition of the discrepancy between the research priorities of patients and health professionals has prompted efforts to involve patients as active contributors in research activities, including scientific conferences. However, there is limited evidence about the experience, challenges, and impacts of patient involvement to inform best practice. This study aims to describe patient and health professional perspectives on patient involvement at the Congress of the International Society for Peritoneal Dialysis (ISPD). Methods: Semi-structured interviews were conducted with 14 patients/caregivers and 15 health professionals from six countries who attended ISPD. Interviews were recorded and transcribed verbatim, and transcripts were analyzed thematically. Results: We identified four themes: protecting and enhancing scientific learning (grounding science in stories, sharing and inspiring new perspectives, distilling the key messages of research presentations, striking a balance between accommodating patients and presenting the science); democratizing access to research (redistributing power, challenging the traditional ownership of knowledge, cultivating self-management through demystifying research); inadequate support for patient/caregiver delegates (lacking purposeful inclusion, challenges in interpreting research findings, soliciting medical advice, difficulty negotiating venue and program, limited financial assistance in attending); and amplifying impact beyond the room (sparking innovation in practice, giving patients and families hope for the future). Conclusions: Patient involvement at the ISPD Congress clarified the applicability of research to patient care and self-management, democratized science, and strengthened the potential impact of research. More structured support for patients to help them purposefully articulate their experience in relation to session objectives may enhance their contribution and their own learning experience.

Measuring continuing medical education conference impact and attendee experience: a scoping review

“…A second study reported using a partially validated tool, 77 and specifically focused on how the conference impacted self-assessment of comfort with providing end of life care. For the remaining studies, 13 (18% of those using surveys/interviews) described using an evaluation framework to inform their study, including tool development, 3 , 22 , 29 , 38 , 41 , 49 , 55 , 64 , 68 , 69 , 74 , 83 of which 3 22 , 64 , 69 referenced the same primary source 70 – a scoping review whose goal was to develop a conference evaluation framework. Of the remaining 24 (32% of those using surveys/interviews), only two studies reported performing any pilot testing of their tool, 42 , 54 with an additional three 29 , 72 , 80 suggesting the work itself represented a pilot study for tool assessment.…”

“…Patients and caregivers are another group for whom inclusion has been a growing priority and seven studies within this review specifically included these individuals as stakeholders, potentially reflecting the growing importance their inclusion in conference planning and implementation has on preventing discrepancies between patient and health professional priorities. 38 , 41 , 63 , 69 Patient and caregiver conference participation avenues varied, ranging from being the primary audience for improved education and involvement in medical and scientific discussions, 63 , 101 to inclusion as planners and speakers to better incorporate their feedback into research, health care, and policy. 38 , 41 This trend reflects a similar shift in broader health care and research toward patient inclusion.…”

“… 38 , 41 , 63 , 69 Patient and caregiver conference participation avenues varied, ranging from being the primary audience for improved education and involvement in medical and scientific discussions, 63 , 101 to inclusion as planners and speakers to better incorporate their feedback into research, health care, and policy. 38 , 41 This trend reflects a similar shift in broader health care and research toward patient inclusion. 119 - 121 While this is demonstrably valuable and multiple organizations (e.g., Stanford Medicine X, Patients Included, European Patients Forum) have created charters for ideal methods of inclusion in conferences, further discussion within the medical community of how to meaningfully incorporate patients and caregivers from an EDI standpoint is warranted.…”

#PatientsIncluded: Patient involvement in nephrology conferences

“…It can enhance scientific learning, clarify the relevance of research to patient care, broaden the research agenda and knowledge exchange, inspire new and different perspectives, democratize access to research and increase the potential of impact of research—beyond the walls of the conference . Patients who have attended scientific meetings report that they gain knowledge and ownership of their own health, and clinicians note that they feel more motivated to change and innovate how they practice . Conferences can also provide an opportunity to establish patient‐researcher partnerships.…”