ArticleJournal of the American Medical Informatics Association : JAMIA2017
Comparative analysis of stakeholder experiences with an online approach to prioritizing patient-centered research topics.
Article in Journal of the American Medical Informatics Association : JAMIA, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.
What it found
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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.
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Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Practical Considerations for Using Online Methods to Engage Patients in Guideline Development.The patient · 2018Pooled it
- Research priorities for improved pandemic and epidemic intelligence.The Lancet. Global health · 2026Review
- Engagement Methods in Brain Tumor Genomic Research: Multimethod Comparative Study.Journal of participatory medicine · 2025Article
- ROMPER: The RAND/USC OPTIC Method for Policy Expert Ratings.MethodsX · 2024Article
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- Rapid Community Engagement in Response to SARS-CoV-2 Funding Opportunities: New York City, 2020‒2021.American journal of public health · 2022Article
- Consensus-Based Guidance on Opioid Management in Individuals With Advanced Cancer-Related Pain and Opioid Misuse or Use Disorder.JAMA oncology · 2022Article
- The impact of panel composition and topic on stakeholder perspectives: Generating hypotheses from online maternal and child health modified-Delphi panels.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Development of a Metric to Detect and Decrease Low-Value Prescribing in Older Adults.JAMA network open · 2022Article
- A Guide to Selecting Participatory Research Methods Based on Project and Partnership Goals.Journal of participatory research methods · 2022Article
- Informing the Development of a Standardized Clinical Definition of Neonatal Abstinence Syndrome: Protocol for a Modified-Delphi Expert Panel.JMIR research protocols · 2021Article
- Rating the seriousness of maternal and child health outcomes linked with pregnancy weight gain.Paediatric and perinatal epidemiology · 2021Article
- Engaging Patients and Professionals to Evaluate the Seriousness of Maternal and Child Health Outcomes: Protocol for a Modified Delphi Study.JMIR research protocols · 2020Article
- Article
- Practical Considerations in Using Online Modified-Delphi Approaches to Engage Patients and Other Stakeholders in Clinical Practice Guideline Development.The patient · 2020Article
- Participant experiences with a new online modified-Delphi approach for engaging patients and caregivers in developing clinical guidelines.European journal for person centered healthcare · 2019Article
- Article
- Exploring patient and family involvement in the lifecycle of an orphan drug: a scoping review.Orphanet journal of rare diseases · 2017Article
- The Promise and Pitfalls of Using Crowdsourcing in Research Prioritization for Back Pain: Cross-Sectional Surveys.Journal of medical Internet research · 2017Article
- Advancing the Science of Recruitment for Family Caregivers: Focus Group and Delphi Methods.JMIR nursingArticle
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
objectiveLittle evidence exists about effective and scalable methods for meaningful stakeholder engagement in research. We explored patient/caregiver experiences with a high-tech online engagement approach for patient-centered research prioritization, compared their experiences with those of professional stakeholders, and identified factors associated with favorable participant experiences.
methodsWe conducted 8 online modified-Delphi (OMD) panels. Panelists participated in 2 rating rounds with a statistical feedback/online discussion round in between. Panels focused on weight management/obesity, heart failure, and Kawasaki disease. We recruited a convenience sample of adults with any of the 3 conditions (or parents/guardians of Kawasaki disease patients), clinicians, and researchers. Measures included self-reported willingness to use OMD again, the panelists' study participation and online discussion experiences, the system's perceived ease of use, and active engagement metrics.
resultsOut of 349 panelists, 292 (84%) completed the study. Of those, 46% were patients, 36% were clinicians, and 19% were researchers. In multivariate models, patients were not significantly more actively engaged (Odds ratio (OR) = 1.69, 95% confidence interval (CI), 0.94-3.05) but had more favorable study participation (β = 0.49; P ≤ .05) and online discussion (β = 0.18; P ≤ .05) experiences and were more willing to use OMD again (β = 0.36; P ≤ .05), compared to professional stakeholders. Positive perceptions of the OMD system's ease of use (β = 0.16; P ≤ .05) and favorable study participation (β = 0.26; P ≤ .05) and online discussion (β = 0.57; P ≤ .05) experiences were also associated with increased willingness to use OMD in the future. Active engagement was not associated with online experience indices or willingness to use OMD again.
conclusionOnline approaches to engaging large numbers of stakeholders are a promising and efficient adjunct to in-person meetings.
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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.