'Knowledge is power': A framework for partnering with consumers in developing and delivering a scientific meeting in nephrology.
conferences
congresses
consumer engagement
patient participation
Journal
Nephrology (Carlton, Vic.)
ISSN: 1440-1797
Titre abrégé: Nephrology (Carlton)
Pays: Australia
ID NLM: 9615568
Informations de publication
Date de publication:
May 2020
May 2020
Historique:
accepted:
25
01
2019
pubmed:
30
1
2019
medline:
29
1
2021
entrez:
30
1
2019
Statut:
ppublish
Résumé
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.
Types de publication
Congress
Langues
eng
Sous-ensembles de citation
IM
Pagination
379-383Subventions
Organisme : National Health and Medical Research Council
ID : 1092957
Organisme : Australian and New Zealand Society of Nephrology
Commentaires et corrections
Type : CommentIn
Informations de copyright
© 2019 Asian Pacific Society of Nephrology.
Références
Boote J, Telford R, Cooper C. Consumer involvement in health research: A review and research agenda. Health Policy 2002; 61: 213-36.
Donovan J, Little P, Mills N et al. Quality improvement report: Improving design and conduct of randomised trials by embedding them in qualitative research: ProtecT (prostate testing for cancer and treatment) study commentary: Presenting unbiased information to patients can be difficult. BMJ 2002; 325: 766-70.
Staley K. Exploring Impact: Public involvement in NHS, public health and social care research. INVOLVE, Eastleigh. 2009. [Cited 21 Nov 2018.] Available from URL: http://www.invo.org.uk/wp-content/uploads/2011/11/Involve_Exploring_Impactfinal28.10.09.pdf
Langston AL, Mccallum M, Campbell MK, Robertson C, Ralston SH. An integrated approach to consumer representation and involvement in a multicentre randomized controlled trial. Clin. Trials 2005; 2: 80-7.
Demian MN, Lam NN, Mac-Way F, Sapir-Pichhadze R, Fernandez N. Opportunities for engaging patients in kidney research. Can. J. Kidney Health Dis. 2017; 4: 1-10.
Molnar AO, Barua M, Konvalinka A, Schick-Makaroff K. Patient engagement in kidney research: Opportunities and challenges ahead. Can. J. Kidney Health Dis. 2017; 4: 1-11.
BEAT-CKD. Better Evidence and Translation in Chronic Kidney Disease. Australia. 2015 [Cited 2018 Oct 31.] Available from URL: http://beatckd.org/
ANZDATA. Australia and New Zealand Dialysis and Transplant Registry. Australia. 2015 [updated 5 Dec 2017; Cited 31 Oct 2018.] Available from: http://www.anzdata.org.au/v1/policies_procedures.html
AKTN. Australasian Kidney Trials Network. Australia. 2018 [Cited 31 Oct 2018.] Available from URL: https://aktn.org.au/
KHA-CARI. Kidney Health Australia - Caring for Australians with Renal Impairment. Australia. [Cited 31 Oct 2018.] Available from URL: http://www.cari.org.au/
Cochrane Kidney and Transplant. Australia. 2015 [Cited 2018 Oct 31.] Available from URL: https://kidneyandtransplant.cochrane.org/
Kidney Health Australia. Australia. 2018 [Cited 31 Oct 2018.] Available from URL: https://kidney.org.au/
ANZSN. ASM Main Program. Australia and New Zealand. 2018 [Cited 7 Nov 2018.] Available from URL: http://www.anzsnasm.com/program
Tong A, Crowe S, Chando S et al. Research priorities in CKD: Report of a national workshop conducted in Australia. Am. J. Kidney Dis. 2015; 66: 212-22.
Chu LF, Utengen A, Kadry B et al. “Nothing about us without us” - Patient partnership in medical conferences. BMJ 2016; 354: 1-7.
de longh A, Giles C. Patients and healthcare conferences: What does true involvement look like? BMJ 2015; 350: 1-2.
YouTube. Better Evidence and Translation in Chronic Kidney Disease Channel. 2018 [Cited 7 Nov 2018.] Available from URL: https://www.youtube.com/channel/UCmjWsEI9_iFrsJrTiKWFbeQ
Charlton J. Nothing about us without us: Disability Oppression and Empowerment. Berkeley, CA: University California Press, 1998.