Increasing the Relevance of Clinical Research for Patients With Kidney Disease

Speyer, Élodie; Subramanian, Lalita; Tentori, Francesca

doi:10.1053/j.ajkd.2016.10.005

Cited by 5 publications

(5 citation statements)

References 14 publications

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“…Based on the context of the examples given we suggest that relevancy be considered as a conceptual underpinning of the impact that patient engagement has on research. While some authors have argued that patient engagement in research can improve the relevance of research through the prioritisation of topics important to patients (17,18), and others have invoked relevancy to justify the selection of patient-oriented outcomes (19), we suggest that relevancy be construed as a more holistic construct, not merely whether the study addresses a pertinent question or collects meaningful outcomes.…”

Section: Discussionmentioning

confidence: 70%

The Impact of Patient Engagement on Trials and Trialists in Ontario, Canada: an Interview Study With IMPACT Awardees

Nicholls

Fox

Monfaredi

et al. 2022

Preprint

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Background: A key component of patient-oriented research is the engagement of patients as partners in the design and conduct of health research. While there is now national and infrastructure and networks to support the engagement of patients as partners, there remain calls for promising practices and success stories. In particular, there remains a keen interest in evaluating the impact that patient engagement has on health research studies. We aimed to investigate the impact that patient engagement had on health research conducted in Ontario, Canada.Methods: Our sampling frame was studies that were awarded funding by the Ontario SPOR SUPPORT Unit (OSSU). Semi-structured interviews were conducted with 10 principal investigators, members of research teams, and patient partners. Interviews explored the role of patient partners, the perceived impact of the patient engagement on the study, challenges faced, and advice for other researchers considering patient engagement. Data were analysed using the thematic analysis method with transcripts coded independently by two members of the study team. All coding and subsequent theme generation were discussed until consensus was achieved.Results: There was variation in the methods used to engage patients and other stakeholders, the roles that patients and stakeholders occupied, and where they had input. Interviewees discussed two major areas of impact of patient engagement on research: impact on the study about which they were being interviewed, which tended to relate to improved relevancy of the research to the study population, and impact on themselves which led to changes in their own practice or approaches to future research. Identified challenges to patient engagement included: identifying and reaching patient advisors or patient partners, time-related challenges, and maintaining engagement over the course of the research.Conclusions: There remains a need to further build out the concept of relevancy and how it may be operationalised in practice. Further, the longer-term impacts of patient engagement on researchers and research terms remains under-explored and may reveal additional elements for evaluation. Challenges to patient engagement remain, including identifying and maintaining engagement with partners that reflect the diversity of the population of interest.

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Section: Discussionmentioning

confidence: 70%

The Impact of Patient Engagement on Trials and Trialists in Ontario, Canada: an Interview Study With IMPACT Awardees

Nicholls

Fox

Monfaredi

et al. 2022

Preprint

View full text Add to dashboard Cite

show abstract

“…Through our cross-case analysis, we noted the theme of ‘relevancy.’ Based on the context of the examples given we suggest that relevancy be considered as a conceptual underpinning of the impact that patient engagement has on research. While some authors have argued that patient engagement in research can improve the relevance of research through the prioritisation of topics important to patients [ 17 , 18 ], and others have invoked relevancy to justify the selection of patient-oriented outcomes [ 19 ], we suggest that relevancy be construed as a more holistic construct, not merely whether the study addresses a pertinent question or collects meaningful outcomes.…”

Section: Discussionmentioning

confidence: 88%

The impact of patient engagement on trials and trialists in Ontario, Canada: An interview study with IMPACT awardees

et al. 2022

View full text Add to dashboard Cite

Background A key component of patient-oriented research is the engagement of patients as partners in the design and conduct of health research. While there is now national infrastructure and networks to support the engagement of patients as partners, there remain calls for promising practices and success stories. In particular, there remains a keen interest in evaluating the impact that patient engagement has on health research studies. We aimed to investigate the impact that patient engagement had on health research conducted in Ontario, Canada. Methods Our sampling frame was studies that were awarded funding by the Ontario SPOR SUPPORT Unit. Semi-structured interviews were conducted with 10 principal investigators, members of research teams, and patient partners. Interviews explored the role of patient partners, the perceived impact of the patient engagement on the study, challenges faced, and advice for other researchers considering patient engagement. Data were analysed using the thematic analysis method with transcripts coded independently by two members of the study team. All coding and subsequent theme generation were discussed until consensus was achieved. Results There was variation in the methods used to engage patients and other stakeholders, the roles that patients and stakeholders occupied, and where they had input. Interviewees discussed two major areas of impact of patient engagement on research: impact on the study about which they were being interviewed, which tended to relate to improved relevancy of the research to the study population, and impact on themselves which led to changes in their own practice or approaches to future research. Identified challenges to patient engagement included: identifying and reaching patient advisors or patient partners, time-related challenges, and maintaining engagement over the course of the research. Conclusions There remains a need to further build out the concept of relevancy and how it may be operationalised in practice. Further, the longer-term impacts of patient engagement on researchers and research teams remains under-explored and may reveal additional elements for evaluation. Challenges to patient engagement remain, including identifying and maintaining engagement with partners that reflect the diversity of the population of interest.

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“…The ability to travel was ranked as an essential concern for end‐stage renal disease (ESRD) patients when choosing their dialysis modality and considering their quality of life 2, 3 . Travel was also ranked by patients and caregivers as the second most important factor as an outcome of renal replacement therapy 4 . However, travel may conflict with dialysis adequacy 5 …”

Section: Introductionmentioning

confidence: 99%

“…2,3 Travel was also ranked by patients and caregivers as the second most important factor as an outcome of renal replacement therapy. 4 However, travel may conflict with dialysis adequacy. 5 Arranging travel is a complicated process, and there are multiple challenges that patients, social workers, and other members of the dialysis care team face in order to plan for successful travel.…”

Section: Introductionmentioning

confidence: 99%

Travel arrangements in chronic hemodialysis patients: A qualitative study

Wongboonsin

Merighi

Walker

et al. 2020

Hemodialysis International

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Introduction For patients on renal replacement therapy (RRT), “travel” and “independence” are rated as 2 of the top 5 factors that inform their choice of treatment modality. While home dialysis modalities offer patients a high degree of independence, the most common RRT in the United States is in‐center hemodialysis (IHD). The limits imposed by IHD treatment can present a variety of challenges for patients who wish to travel. This study explored how IHD patients managed their travel and the role of dialysis social workers in executing travel arrangements for patients. Methods We performed a qualitative descriptive investigation using semi‐structured interviews with adults receiving IHD (n = 16) and renal social workers (n = 8) from Iowa, Minnesota, North Dakota, South Dakota, and Wisconsin. Data were analyzed using a constant comparative method. Findings Three themes emerged from the interviews: travel process, travel‐related barriers, and travel‐related facilitators. The travel process entailed transient dialysis unit challenges and the need for multiple preparations and precautions. Barriers included comorbidities and not having a relationship with transient dialysis unit staff. Facilitators focused on the importance of travel and staff professionalism at transient dialysis units. Overall, there was lack of uniform protocols to guide the travel process at the patient and the dialysis unit levels. Discussion This study identified multiple perspectives regarding travel arrangements in chronic IHD patients. There is limited research on travel issues for IHD patients and this investigation is among the first to articulate barriers and facilitators associated with travel from the perspective of patients and social workers. Supporting travel for IHD patients can increase their sense of autonomy and provide opportunities to improve their quality of life.

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Increasing the Relevance of Clinical Research for Patients With Kidney Disease

Cited by 5 publications

References 14 publications

The Impact of Patient Engagement on Trials and Trialists in Ontario, Canada: an Interview Study With IMPACT Awardees

The Impact of Patient Engagement on Trials and Trialists in Ontario, Canada: an Interview Study With IMPACT Awardees

The impact of patient engagement on trials and trialists in Ontario, Canada: An interview study with IMPACT awardees

Travel arrangements in chronic hemodialysis patients: A qualitative study

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