ArticleMedical care2018
Building Meaningful Patient Engagement in Research: Case Study From ADVANCE Clinical Data Research Network.
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 17 papers, 2 of them syntheses 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
17 citing papers in PubMed, 2 syntheses or guidelines pooled it, 34 citations in OpenAlex.
- Patient and Patient Group Engagement in Cancer Clinical Trials: A Stakeholder Charter.Current oncology (Toronto, Ont.) · 2021Guideline
- Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot.Health expectations : an international journal of public participation in health care and health policy · 2019Pooled it
- Promising Patient-Engagement Practices Used by National Research Networks at the US Veterans Health Administration: Perspectives of Veterans, Staff, and Research Leaders.Learning health systems · 2026Article
- The sustainability of practice-based research networks across the globe - insights from a worldwide qualitative study.BMC health services research · 2025Article
- Engaging children, young adults, and other partners to identify priorities for sport related concussion research.Research involvement and engagement · 2025Article
- Community partner coauthorship for increased implementation science impact: Strengthening capacity and engagement.Journal of clinical and translational science · 2024Article
- Article
- Patient engagement in a national research network: barriers, facilitators, and impacts.Research involvement and engagement · 2023Article
- Engaging citizens living in vulnerable circumstances in research: a narrative review using a systematic search.Research involvement and engagement · 2021Review
- The Utility of Patient Engagement in Drug Research and Development.Pharmaceutical medicine · 2021Article
- Network Engagement in Action: Stakeholder Engagement Activities to Enhance Patient-centeredness of Research.Medical care · 2020Article
- Using Patient and Family Engagement Strategies to Improve Outcomes of Health Information Technology Initiatives: Scoping Review.Journal of medical Internet research · 2019Article
- The Behavioral Medicine Research Council: Its origins, mission, and methods.Health psychology : official journal of the Division of Health Psychology, American Psychological Association · 2019Article
- Engaging patients, clinicians, and the community in a Clinical Data Research Network: Lessons learned from the CAPriCORN CDRN.Learning health systems · 2019Article
- The Role of Participants in a Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
- Engagement in PCORnet Research Networks.Medical care · 2018Article
- The Importance of Primary Care Research in Understanding Health Inequities in the United States.Journal of the American Board of Family Medicine : JABFMArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
15 authors at 4 institutions in 1 country.
Funding
Abstract
backgroundStrategies to engage patients to improve and enhance research and clinical care are increasingly being implemented in the United States, yet little is known about best practices for or the impacts of meaningful patient engagement.
objectiveWe describe and reflect on our patient stakeholder groups, engagement framework, experiences, and lessons learned in engaging patients in research, from generating proposal ideas to disseminating findings.
settingThe ADVANCE (Accelerating Data Value Across a National Community Health Center Network) clinical data research network is the nation's largest clinical dataset on the safety net, with outpatient clinical data from 122 health systems (1109 clinics) in 23 states.
resultsPatients stakeholders codeveloped the ADVANCE engagement framework and its implementation in partnership with network leaders. In phase I of ADVANCE, patients were involved with designing studies (input on primary outcome measures and methods) and usability testing (of the patient portal). In phase II, the network is prioritizing research training, dissemination opportunities, an "ambassador" program to pair more experienced patient stakeholders with those less experienced, and evaluation of engagement activities and impacts. DISCUSSION: The ADVANCE framework for patient engagement has successfully involved a diverse group of patients in the design, implementation, and interpretation of comparative effectiveness research. Our experience and framework can be used by other organizations and research networks to support patient engagement activities.
Indexed as
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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.