International perspectives on Patient Involvement in Clinical Trials in Nephrology.

Journal article

Banerjee, D., Lowe-Jones, R., Damster, S., Thomas, N., Scholes-Robertson, N., Tong, A., Levin, A. and ISN-ACT patient-engagement in clinical trials group (2020). International perspectives on Patient Involvement in Clinical Trials in Nephrology. Kidney International. 98 (3), pp. 566-571. https://doi.org/S0085-2538(20)30797-3
AuthorsBanerjee, D., Lowe-Jones, R., Damster, S., Thomas, N., Scholes-Robertson, N., Tong, A., Levin, A. and ISN-ACT patient-engagement in clinical trials group
AbstractThe involvement of patients in nephrology clinical trials is limited despite their ability to prioritise research, help with study design, participation and implementation of results. The aim of this position paper is to review the need, challenges and assess the present situation of patient involvement; and describe the role of International Society of Nephrology in promoting patient involvement. Patient involvement across from priority setting through to implementation of the trial findings can ensure that the evidence generated aligns with their priorities, maximises recruitment and retention, as well as its impact on practice and policy. This has been demonstrated in UK, Australia, Canada and United States, however little is known about the involvement of patients in trials internationally. Barriers to patient involvement includes the patients' lack of awareness of opportunities to participate, knowledge of clinical research, lack of time, ill health; and lack of initiative amongst researchers to provide opportunity. To assess patient involvement in clinical trials in kidney disease the International Society of Nephrology surveyed the members of the regional boards to which 177 members responded. The survey demonstrated the variability in patient involvement among different regions, highlighted the lack of nominated leads and formal mechanisms of patient involvement. Though members were keen to communicate with patient, social media was underutilised. The International Society of Nephrology will support patient involvement by developing tools and creating better awareness, to promote high quality clinical trials in Nephrology. [Abstract copyright: Copyright © 2020. Published by Elsevier Inc.]
KeywordsPatient involvement; clinical research; clinical trial; nephrology
Year2020
JournalKidney International
Journal citation98 (3), pp. 566-571
PublisherElsevier
ISSN1523-1755
Digital Object Identifier (DOI)https://doi.org/S0085-2538(20)30797-3
https://doi.org/10.1016/j.kint.2020.06.023
Publication dates
Online09 Jul 2020
Publication process dates
Accepted03 Jun 2020
Deposited06 Jun 2020
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