Determining the research priorities for patients with chronic kidney disease not on dialysis.

BACKGROUND: The importance of engaging key stakeholders, and patients in particular, in determining research priorities has been recognized. We sought to identify the top 10 research priorities for patients with non-dialysis chronic kidney disease (CKD), their caregivers, and the clinicians and policy-makers involved in their care. METHODS: We used the four-step James Lind Alliance process to establish the top 10 research priorities. A national survey of patients with non-dialysis CKD (estimated glomerular filtration rate <45 mL/min/1.73 m 2 ), their caregivers, and the clinicians and policy-makers involved in their care was conducted to identify research uncertainties. A Steering Group of patients, caregivers, clinicians and researchers combined and reduced these uncertainties to 30 through a series of iterations. Finally, a workshop with participants from across Canada (12 patients, 6 caregivers, 3 physicians, 2 nurses, 1 pharmacist and 1 policy-maker) was held to determine the top 10 research priorities, using a nominal group technique. RESULTS: Overall, 439 individuals responded to the survey and identified 1811 uncertainties, from which the steering group determined the top 30 uncertainties to be considered at the workshop. The top 10 research uncertainties prioritized at the workshop included questions about treatments to prevent progression of kidney disease (including diet) and to treat symptoms of CKD, provider- and patient-targeted strategies for managing CKD, the impact of lifestyle on disease progression, harmful effects of medications on disease progression, optimal strategies for treatment of cardiovascular disease in CKD and for early identification of kidney disease, and strategies for equitable access to care for patients with CKD. CONCLUSIONS: We identified the top 10 research priorities for patients with CKD that can be used to guide researchers, as well as inform funders of health-care research.

A randomized controlled trial comparing in-person and wiki-inspired nominal group techniques for engaging stakeholders in chronic kidney disease research prioritization.

BACKGROUND: Few studies have evaluated stakeholder engagement in chronic kidney disease (CKD) research prioritization. In this two-arm, parallel group randomized controlled trial, we sought to compare an in-person nominal group technique (NGT) approach with an online wiki-inspired alternative to determining the top 10 CKD research priorities, and to evaluate stakeholder engagement and satisfaction with each process. METHODS: Eligible participants included adults ≥18 years with access to a computer and Internet, high health literacy, and from one of the following stakeholder groups: patients with CKD not on dialysis, their caregivers, health care providers who care for patients with CKD, or CKD-related health policymakers. Fifty-six participants were randomized to a wiki-inspired modified NGT that occurred over 3 weeks vs. a 1-day in-person NGT workshop, informed by James Lind Alliance methodology, to determine the top 10 CKD-related research priorities. The primary outcome was the pairwise agreement between the two groups' final top 10 ranked priorities, evaluated using Spearman's correlation coefficient. Secondary outcomes included participant engagement and satisfaction and wiki tool usability. RESULTS: Spearman's rho for correlation between the two lists was 0.139 (95 % confidence interval -0.543 to 0.703, p = 0.71), suggesting low correlation between the top 10 lists across the two groups. Both groups ranked the same item as the top research priority, with 5 of the top 10 priorities ranked by the wiki group within the top 10 for the in-person group. In comparison to the in-person group, participants from the wiki group were less likely to report: satisfaction with the format (73.7 vs.100 %, p = 0.011); ability to express their views (57.9 vs 96.0 %, p = 0.0003); and perception that they contributed meaningfully to the process (68.4 vs 84.0 %, p = 0.004). CONCLUSIONS: A CKD research prioritization approach using an online wiki-like tool identified low correlation in rankings compared with an in-person approach, with less satisfaction and perceptions of active engagement. Modifications to the wiki-inspired tool are required before it can be considered a potential alternative to an in-person workshop for engaging patients in determining research priorities. TRIAL REGISTRATION: ( ISRCTN18248625 ).

A Framework to Ensure Patient Partners Have Equal and Contributing Voices Throughout the Research Program Evaluation Process.

PURPOSE OF PROGRAM: Traditionally, peer review was a closed process conducted only by individuals working in the research field. To establish a more integrated and patient-centered approach, one of Canada's largest kidney research networks (Can-SOLVE CKD) has created a Research Operations Committee (ROC) that includes patients as key members. The ROC represents one way for achieving meaningful patient-oriented research (POR). SOURCE OF INFORMATION: Can-SOLVE CKD, a network created as part of the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR). METHODS: The ROC consists of patients, physicians, scientists, Indigenous partners, experts in research methodology, and a member of Can-SOLVE CKD's operational team. On an annual basis, Can-SOLVE CKD's research teams provide the ROC with a review package, which incorporates information from patient engagement check-in calls and surveys, the project's knowledge translation plan and products, and a progress report written by the project team. The ROC evaluates the review package and provides feedback and recommendations accordingly. KEY FINDINGS: The transparent nature of the process, regular feedback and review, along with an overt accountability and scoring system, has been embraced by both patients and researchers. As a result of the ROC process, the number of patient leads for each project has grown over a 3-year period and more researchers have received POR and cultural sensitivity training. LIMITATIONS: While anecdotal evidence suggests this approach is beneficial for achieving POR, formal mechanisms of evaluation are currently lacking. IMPLICATIONS: This ROC framework ensures patients are active contributors throughout the research process and could be adopted by other organizations to achieve a more patient-centered approach to research.

OBJECTIF DU PROGRAM: L'évaluation par les pairs consiste habituellement en un processus fermé et mené uniquement par des personnes travaillant dans le domaine de la recherche. Pour développer une approche plus intégrée et davantage axée sur les patients, un des plus importants réseaux canadiens de recherche sur les maladies rénales (Can-SOLVE CKD) a créé un comité de gestion de la recherche (CGR) où les patients sont des membres à part entière. Une approche qui vise la conduite d'activités de recherches significatives et davantage orientées vers le patient. SOURCE: Can-SOLVE CKD, un réseau créé dans le cadre de la Stratégie de recherche axée sur le patient (SRAP) des Instituts de recherche en santé du Canada (IRSC). MÉTHODOLOGIE: Le CGR rassemble des patients, des médecins, des chercheurs, des partenaires autochtones, des experts en méthodologie de recherche et un membre de l'équipe d'intervention de Can-SOLVE CKD. Une fois par année, l'équipe de recherche de Can-SOLVE CKD fournit au CGR un dossier d'examen. Ce dossier contient les informations recueillies lors d'appels ou de sondages vérifiant l'engagement des patients, le plan d'application des connaissances du projet et ses résultats, de même qu'un rapport périodique rédigé par l'équipe responsable du projet. Le CGR évalue ce dossier et émet ses commentaires et recommandations. PRINCIPAUX RÉSULTATS: La transparence du processus, la rétroaction et la révision sur une base régulière, de même que les systèmes de responsabilité et de notation ouverts ont été adoptés tant par les patients que par les chercheurs. Grâce à ce processus, le nombre de patients candidats pour chaque projet a augmenté sur une période de trois ans, et davantage de chercheurs ont reçu une formation sur les réalités culturelles et la pratique d'activités de recherche axées sur le patient. LIMITES: Bien que des preuves anecdotiques suggèrent que cette approche soit bénéfique à la conduite de recherches axées sur le patient, des mécanismes formels pour son évaluation manquent toujours. CONCLUSION: Le cadre proposé par le CGR assure une contribution active des patients tout au long du processus de recherche. Ce program pourrait être adopté par d'autres organizations et permettre la réalisation d'activités de recherche davantage axées sur le patient.