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Beyond the dataset: integrating public voices in data science.
Ana-Paula Rubio1, Janette Dunn2, Janice Borthwick2
1Centre for Medical Informatics, University of Edinburgh, Edinburgh, UK. arubio@ed.ac.uk.
Research Involvement and Engagement
|January 8, 2026
Summary
Patient and public involvement and engagement (PPIE) is crucial for health research quality. This article reflects on challenges in implementing PPIE within large-scale data science research consortia like SCONe.
Area of Science:
- Ophthalmology
- Digital Health
- Health Data Science
Background:
- Digitalisation of health data supports initiatives like the Scottish Collaborative Optometry-Ophthalmology Network eResearch (SCONe).
- Patient and Public Involvement and Engagement (PPIE) is vital for enhancing health research quality, relevance, and acceptability.
- Challenges in PPIE implementation persist, including inconsistent terminology and lack of guidance, especially in data science.
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