ArticleAMIA Joint Summits on Translational Science proceedings. AMIA Joint Summits on Translational Science2019
Examining the Needs of Patient Stakeholders as Research Partners in Health Data Networks for Translational Research.
Article in AMIA Joint Summits on Translational Science proceedings. AMIA Joint Summits on Translational Science, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 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
3 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
- Phenotyping severity of patient-centered outcomes using clinical notes: A prostate cancer use case.Learning health systems · 2020Article
- Tracing scientific outputs in the osteoarthritis research field in China based on publications in the Web of Science.Osteoarthritis and cartilage openReview
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Patient stakeholders are getting increasingly involved in research health data networks, particularly as research partners. However, tools do not exist to help effectively orient, educate, and engage patient stakeholders as they take on these roles. Using a human centered design approach, we conducted a patient stakeholder needs assessment qualitative study to identify key user needs to drive design recommendations for development of an online education and engagement tool for research health data networks. We found three key needs related to multiple role identities, motivations and expectations for participation on research teams, and patient journeys. Design recommendations derived from the needs assessment are discussed that can support future tool design and testing.
Identifiers
31258989PMC6568099What 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.