Living well with kidney disease by patient and care‐partner empowerment: Kidney health for everyone everywhere

Kalantar-Zadeh, Kamyar; Li, Philip Kam-Tao; Tantisattamo, Ekamol; Kumaraswami, Latha; Liakopoulos, Vassilios; Lui, SL; Ulasi, Ifeoma; Andreoli, Sharon P.; Balducci, Alessandro; Dupuis, Sophie; Harris, Tess; Hradsky, Anne; Knight, Richard; Kumar, Sajay; Ng, Maggie; Poidevin, Alice; Saadi, Gamal; Tong, Allison

doi:10.1111/jorc.12366

Cited by 1 publication

(1 citation statement)

References 19 publications

(22 reference statements)

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“…To enhance life participation, symptoms and life impacts must be addressed. Education, engagement, and empowerment must be provided as part of a ‘strengths-based approach’ before clinical strategies are determined [ 6 ]. ‘Physical wellness’, ‘sustaining relationships’, and ‘fulfilling responsibilities’ are findings from Kidney Connect which are consistent with ‘address symptoms and life impacts’ from the SONG Initiative.…”

Section: How Did the Kidney Connect Project Compare With Work Driven ...mentioning

confidence: 99%

The value of partnership in patient-driven as well as in researcher-driven projects

Søndergaard¹,

Deele²,

Agerskov

et al. 2023

Res Involv Engagem

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Patient involvement in health research is rarely driven solely by patients, who could be considered to have the highest degree of investment in such research. In the Kidney Connect project, the patients have been the driving force. This commentary considers the following questions: How did we, as patients, lead the work as the driving force in the project? What went well and what did not go so well from our perspective? How did the project compare with work driven by researchers? We argue that projects driven solely by either patients or researchers each have their own limitations. Projects driven solely by patients have some limitations in their robustness, rigour, and likelihood of publication. Nevertheless, a project driven solely by patients has been able to produce findings that are broadly comparable to a project driven solely by researchers that employed methods ensuring robustness and rigour. We suggest collaboration between patients and researchers also for projects driven by patients.

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Section: How Did the Kidney Connect Project Compare With Work Driven ...mentioning

confidence: 99%

The value of partnership in patient-driven as well as in researcher-driven projects

Søndergaard¹,

Deele²,

Agerskov

et al. 2023

Res Involv Engagem

View full text Add to dashboard Cite

show abstract

Living well with kidney disease by patient and care‐partner empowerment: Kidney health for everyone everywhere

Cited by 1 publication

References 19 publications

The value of partnership in patient-driven as well as in researcher-driven projects

The value of partnership in patient-driven as well as in researcher-driven projects

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