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

Chu, Larry F.; Utengen, Audun; Kadry, Bassam; Kucharski, Sarah E.; Campos, Hugo; Crockett, Jamia; Dawson, Nick; Clauson, Kevin A.

doi:10.1136/bmj.i3883

Cited by 80 publications

(61 citation statements)

References 15 publications

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“…Additionally, it is remarkable that patients are not associated in developing and implementing CST programmes as they play increasing roles in other medical domains (Chu et al, 2016). While unendorsed CST programmes may quickly lack sustainability, programmes financially supported and endorsed by official bodies and medical societies are widely implemented in the long-run.…”

Section: Discussionmentioning

confidence: 99%

Core components of Communication Skills Training in oncology: A synthesis of the literature contrasted with consensual recommendations

2018

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This systematic review synthesises the literature on Communication Skills Training (CST) programmes for oncology professionals to identify their core components and compare them with the recommendations formulated in a position paper based on a European expert consensus meeting. A systematic literature search was conducted using MEDLINE (OVID and PUBMED), CINAHL, EMBASE, PSYCHINFO, Web of Science and the Cochrane Library. The analytic approach relied on an a priori framework based on the position paper's recommendations, generating several themes. Forty-nine articles were included. The CST programmes reported between 2010 and 2016 were heterogeneous. Some recommendations, especially those regarding content and pedagogic tools, were followed by most providers, while others, such as setting, objectives and participants, were not. This synthesis raises questions on how CST programmes are conceived and how they could or should be conceived in future. While medicine, especially clinical communication, is socially and culturally embedded, some recommendations regarding CST programmes seem to be universally valuable, contributing to ensure quality and enhanced credibility, and thus endorsement and sustained implementation, of CST programmes in the oncology setting.

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Section: Discussionmentioning

confidence: 99%

Core components of Communication Skills Training in oncology: A synthesis of the literature contrasted with consensual recommendations

2018

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“…Early consideration is needed to waive conference fees for consumers and arrange dialysis availability. Consistent with the expression, ‘Nothing about us without us’ adopted by disability rights activists and other consumer advocacy groups, is a comment from a member of the BEAT‐CKD Consumer Advisory Board – ‘I think consumers should have unlimited access to these information sessions, as they are why these meetings come about’.…”

Section: Next Stepsmentioning

confidence: 99%

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

et al. 2019

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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.

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“…This experience has challenged me to ask people with kidney disease in our area – What is important to them and how does this translate into research ideas? At medical conferences, patients can make important contributions in all areas ‘to spark innovation in healthcare by creating networks of experts, sharing knowledge, forming collaborations and thoughtful challenging of conventional thinking’ …”

Section: After My Presentationmentioning

confidence: 99%

We want to be part of the solution, not just be the problem: Why patients need to be involved in scientific conferences?

Scholes‐Robertson

2019

Nephrology

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

Cited by 80 publications

References 15 publications

Core components of Communication Skills Training in oncology: A synthesis of the literature contrasted with consensual recommendations

Core components of Communication Skills Training in oncology: A synthesis of the literature contrasted with consensual recommendations

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

We want to be part of the solution, not just be the problem: Why patients need to be involved in scientific conferences?

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