Patients and healthcare conferences: what does true involvement look like?

Iongh, Anya de; Giles, Ceinwen

doi:10.1136/bmj.h1325

Cited by 6 publications

(8 citation statements)

References 0 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…8 Despite this progress, the role of patients in academic medical conferences has been poorly defined, discussed, and implemented. 9 We describe the benefits of patient partnership in academic medical conferences and how it can be enabled. We define medical conferences to include any meeting where health care issues are discussed for the purpose of educating, evaluating or improving medical care.…”

mentioning

confidence: 99%

“Nothing about us without us”—patient partnership in medical conferences

Chu

Utengen²,

Kadry

et al. 2016

BMJ

View full text Add to dashboard Cite

mentioning

confidence: 99%

“Nothing about us without us”—patient partnership in medical conferences

Chu

Utengen²,

Kadry

et al. 2016

BMJ

View full text Add to dashboard Cite

“…8 Participants also suggested that all patients/caregivers should be named delegates in the program (with permission), acknowledged, be financially supported to attend, given a clear brief to speak on, and have the opportunity to shape the agenda of the conference and specific sessions, which have previously been suggested by patient partners. 1,11,15,26…”

Section: Discussionmentioning

confidence: 99%

“…TG conducted semi-structured interviews with participants, either face-to-face when possible or via videoconference from May to June 2018. The interview guide was developed based on a review of the literature 1,3,6,10,12,13,18,21 and discussion with investigators (Online Supplemental Item 1). All interviews were audio recorded and transcribed verbatim.…”

Section: Methodsmentioning

confidence: 99%

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

et al. 2020

View full text Add to dashboard Cite

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.

show abstract

“…Conferences represent an opportunity for meaningful partnership with consumers to deliver this information and we have identified strategies to ensure such engagement is achievable and worthwhile (Box ). These closely align with the principles of patient involvement in conferences (accommodation, codesign, engagement, education and mentorship) as recommended in the Stanford Framework for Patient Partnership developed by Chu et al and suggestions made by consumers …”

Section: Reflectionsmentioning

confidence: 94%

‘Knowledge is power’: A framework for partnering with consumers in developing and delivering a scientific meeting in nephrology

et al. 2019

View full text Add to dashboard Cite

Involving consumers (patients, carers and family members) across all stages of research is gaining momentum in the nephrology community. Scientific meetings present a partnership opportunity with consumers for dissemination of research findings. The Better Evidence and Translation in Chronic Kidney Disease (BEAT‐CKD) research collaboration, in partnership with Kidney Health Australia, convened two consumer sessions at the 54th Australian and New Zealand Society of Nephrology Annual Scientific Meeting held in September 2018. The educational objectives, topics and session formats were informed by members of the Better Evidence and Translation‐Chronic Kidney Disease Consumer Advisory Board (which at the time comprised 36 consumers from around Australia with varied experience of kidney disease). Patients, health professionals and researchers facilitated and presented at the sessions. In‐person and live‐streaming attendance options were available, with over 400 total participants across the two sessions. Sessions were also video recorded for dissemination and later viewing. Evaluations demonstrated consumers found the presentations informative, relevant and accessible. Attendees indicated strong interest in participating in similar sessions at future scientific meetings. We propose a framework for partnering with consumers as organisers, facilitators, speakers and attendees at scientific meetings in nephrology.

show abstract

Patients and healthcare conferences: what does true involvement look like?

Abstract: In the circus of healthcare conferences how can we make patients the ringmasters and not the monkeys?Anya de Iongh member, patient panel, The BMJ, Ceinwen Giles independent consultant in field of patient experience and engagement and member, patient panel, The BMJ

Cited by 6 publications

References 0 publications

“Nothing about us without us”—patient partnership in medical conferences

“Nothing about us without us”—patient partnership in medical conferences

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

‘Knowledge is power’: A framework for partnering with consumers in developing and delivering a scientific meeting in nephrology

Contact Info

Product

Resources

About