Big data research has grown considerably over the last two decades. This presents new ethical challenges around consent, data storage and anonymisation. Big data research projects require public support to succeed, and it has been argued that one way to achieve this is through public involvement and engagement.
We follow NIHR definitions:
Public involvement – “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.”
Public engagement – “information and knowledge about research is provided and disseminated.” – this usually takes place after the project is concluded.
Achieving diversity in public involvement and engagement is a challenge. Still, it is one of the fundaments for successful involvement and engagement. Lack of diversity can increase health inequalities if views of some groups (especially seldom-heard communities) are ignored.
This PhD consists of four projects:
1. Review exploring involvement and engagement in big data research.
Protocol available in BMJ Open
2. Use of the Hashtag #DataSavesLives on Twitter: Exploratory and Thematic Analysis
Paper published in the Journal of Medical Internet Research
3. Involvement and engagement of seldom-heard communities in big data research.
Conference abstract available in the International Journal of Population Data Science
4. A qualitative study exploring researchers’ experience of involving and engaging seldom-heard communities in big data research.
If interested in learning more, please email for more information: email@example.com.
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