ReviewClinical journal of the American Society of Nephrology : CJASN2016
Patient and Other Stakeholder Engagement in Patient-Centered Outcomes Research Institute Funded Studies of Patients with Kidney Diseases.
Review in Clinical journal of the American Society of Nephrology : CJASN, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to 3 registered trials, which are not on this map. Cited by 38 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Bringing Care to Patients: A Patient-Centered Medical Home for Kidney Disease
Reducing Health Disparity in Chronic Kidney Disease in Zuni Indians
Home-Based Chronic Kidney Disease (CKD) Care in Native American's of New Mexico- A Disruptive Innovation
Who cites it
38 citing papers in PubMed.
- The Otago Exercise Program compared to falls prevention education in Zuni elders: a randomized controlled trial.BMC geriatrics · 2022Trial
- Understanding the healthcare services and social support needs of patients with end-stage kidney disease in Ghana.BMC nephrology · 2026Article
- Barriers and solutions for healthcare professionals to involve patients as partners in oncology research: Project RISE.Future oncology (London, England) · 2026Article
- Implementation Strategies for Strengthening Community and Stakeholder Engagement in Clinical and Translational Pilot Studies.Journal of participatory research methods · 2026Article
- The challenge of patient recruitment into early phase clinical trials: Is time-effective academic translational research feasible? Lessons from a phase I/II trial in patients with B-cell deficiencies.Frontiers in medicine · 2026Article
- Systematic Review of Patient and Caregiver Involvement in CKD Research.Kidney international reports · 2025Article
- Article
- Engagement of patients and the public in personalised prevention in Europe using genomic information: a scoping review.Frontiers in public health · 2024Article
- Stakeholder-Driven Intervention Development for Dialysis Trials Using a Design Sprint Methodology.Kidney medicine · 2023Article
- Supporting families and caregivers of children with disabilities through a parent peer mentor (PPM): experiences from a patient-oriented research network.Research involvement and engagement · 2023Article
- Partnering with patients and caregivers to enrich research and care in kidney disease: values and strategies.Clinical kidney journal · 2023Review
- The impact of patient engagement on trials and trialists in Ontario, Canada: An interview study with IMPACT awardees.Research involvement and engagement · 2022Article
- The use of co-design in developing physical activity interventions for older adults: a scoping review.BMC geriatrics · 2022Article
- Patient-centred clinical trial design.Nature reviews. Nephrology · 2022Review
- Evaluating the Impact of Stakeholder Engagement in a School-Based Type 1 Diabetes Study.Diabetes spectrum : a publication of the American Diabetes Association · 2021Article
- Understanding patient needs and gaps in radiology reports through online discussion forum analysis.Insights into imaging · 2021Article
- The practice of active patient involvement in rare disease research using ICT: experiences and lessons from the RUDY JAPAN project.Research involvement and engagement · 2021Article
- The WISHED Randomized Controlled Trial: Impact of an Interactive Health Communication Application on Home Dialysis Use in People With Chronic Kidney Disease.Canadian journal of kidney health and disease · 2021Article
- Stakeholder Engagement in Pragmatic Clinical Trials: Emphasizing Relationships to Improve Pain Management Delivery and Outcomes.Pain medicine (Malden, Mass.) · 2020Article
- Engaging patients and family members to design and implement patient-centered kidney disease research.Research involvement and engagement · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
32 authors.
Funding
Abstract
Including target populations in the design and implementation of research trials has been one response to the growing health disparities endemic to our health care system, as well as an aid to study generalizability. One type of community-based participatory research is "Patient Centered-Research", in which patient perspectives on the germane research questions and methodologies are incorporated into the study. The Patient-Centered Outcomes Research Institute (PCORI) has mandated that meaningful patient and stakeholder engagement be incorporated into all applications. As of March 2015, PCORI funded seven clinically-focused studies of patients with kidney disease. The goal of this paper is to synthesize the experiences of these studies to gain an understanding of how meaningful patient and stakeholder engagement can occur in clinical research of kidney diseases, and what the key barriers are to its implementation. Our collective experience suggests that successful implementation of a patient- and stakeholder-engaged research paradigm involves: (1) defining the roles and process for the incorporation of input; (2) identifying the particular patients and other stakeholders; (3) engaging patients and other stakeholders so they appreciate the value of their own participation and have personal investment in the research process; and (4) overcoming barriers and challenges that arise and threaten the productivity of the collaboration. It is our hope that the experiences of these studies will further interest and capacity for incorporating patient and stakeholder perspectives in research of kidney diseases.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.