ArticleMedical care2018
A Novel Stakeholder Engagement Approach for Patient-centered Outcomes Research.
Article in Medical care, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 1 of them a synthesis that pooled it.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
24 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Patient and Patient Group Engagement in Cancer Clinical Trials: A Stakeholder Charter.Current oncology (Toronto, Ont.) · 2021Guideline
- Improving Collaborative Engagement in Health State Valuation: A Scoping Review of Current Practices and Emerging Recommendations.PharmacoEconomics · 2026Review
- Engagement Methods in Brain Tumor Genomic Research: Multimethod Comparative Study.Journal of participatory medicine · 2025Article
- Engaging people with lived experience on community advisory boards in community-based participatory research: a scoping review.International journal for equity in health · 2025Article
- Patient engagement in a national research network: barriers, facilitators, and impacts.Research involvement and engagement · 2023Article
- Stakeholder engagement infrastructure to support multicenter research networks: Advances from the clinical research networks participating in PCORnet.Learning health systems · 2023Article
- Implementation of smart supportive dementia technology in a hospital transitional care setting using human-centred design.Healthcare management forum · 2022Article
- Linking health education, civic engagement, and research at a large Federally Qualified Health Center to address health disparities.Health services research · 2022Article
- Framework and Practical Guidance for the Ethical Use of Electronic Methods for Communication With Participants in Medical Research.Journal of medical Internet research · 2022Review
- 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
- Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review.Journal of medical Internet research · 2022Article
- Virtual Care With Digital Technologies for Rural Canadians Living With Cardiovascular Disease.CJC open · 2022Review
- Engaging veteran stakeholders to identify patient-centred research priorities for optimizing implementation of lung cancer screening.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Patients as partners in health research: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Engaging with stakeholders for community-based health research in India: Lessons learnt, challenges and opportunities.Journal of global health · 2021Review
- Predicting unplanned medical visits among patients with diabetes: translation from machine learning to clinical implementation.BMC medical informatics and decision making · 2021Article
- Article
- Patients as Agents in Behavioral Health Research and Service Provision: Recommendations to Support the Learning Health System.Applied clinical informatics · 2019Article
- A taxonomy of impacts on clinical and translational research from community stakeholder engagement.Health expectations : an international journal of public participation in health care and health policy · 2019Article
- Engaging patients, clinicians, and the community in a Clinical Data Research Network: Lessons learned from the CAPriCORN CDRN.Learning health systems · 2019Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
INTRODUCTION/
objectivesThe engagement of patients and other stakeholders is a critical element in the design of patient-centered outcomes research studies. However, methodology for scalable engagement in research management particularly activities such as operationalization of principles and setting of priorities is not well-developed. The objective of this study is to describe a novel approach for scalable stakeholder engagement in research aligned with the Patient-Centered Outcomes Research Institute (PCORI) engagement principles, which was evaluated in a national clinical data research network. MATERIALS AND
methodsPatient, patient advocate, clinician, and researcher stakeholders were recruited from clinical sites, as well as social media sites related to the 3 conditions of focus, heart failure, obesity, and Kawasaki disease. The engagement strategy was designed, implemented, and mapped to the PCORI engagement principles. Evaluation included internal assessment and quantitative measures of online engagement.
resultsWe operationalized the PCORI principles with 12 stakeholder engagement strategies and convened stakeholder advisory boards and online research prioritization panels to determine research priorities in a rigorous, deliberative process. A total of 46 advisors (20 patients) and 339 panelists (159 patients) actively participated. There were not significant differences between patients and clinicians in level of online engagement. Nonetheless, while patients reported a slightly greater challenge with following online discussion, they overall had a more favorable opinion about use of the online format. DISCUSSION/
conclusionAn efficient way to engage large numbers of representative stakeholders in research is a necessary first step to assure the public of trustworthy use of data networks for health research. This paper describes a comprehensive approach to engagement in patient-centered outcomes research management that informs ongoing development of rigorous methodologies in this area.
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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.