Teodorowski, Piotr, Rodgers, Sarah E 
ORCID: 0000-0002-4483-0845, Fleming, Kate ORCID: 0000-0002-6572-5016 and Frith, Lucy ORCID: 0000-0002-8506-0699
(2022)
Use of the Hashtag #DataSavesLives on Twitter: Exploratory and Thematic Analysis.
JOURNAL OF MEDICAL INTERNET RESEARCH, 24 (11).
e38232-.
Abstract
<h4>Background</h4>"Data Saves Lives" is a public engagement campaign that highlights the benefits of big data research and aims to establish public trust for this emerging research area.<h4>Objective</h4>This study explores how the hashtag #DataSavesLives is used on Twitter. We focused on the period when the UK government and its agencies adopted #DataSavesLives in an attempt to support their plans to set up a new database holding National Health Service (NHS) users' medical data.<h4>Methods</h4>Public tweets published between April 19 and July 15, 2021, using the hashtag #DataSavesLives were saved using NCapture for NVivo 12. All tweets were coded twice. First, each tweet was assigned a positive, neutral, or negative attitude toward the campaign. Second, inductive thematic analysis was conducted. The results of the thematic analysis were mapped under 3 models of public engagement: deficit, dialogue, and participatory.<h4>Results</h4>Of 1026 unique tweets available for qualitative analysis, discussion around #DataSavesLives was largely positive (n=716, 69.8%) or neutral (n=276, 26.9%) toward the campaign with limited negative attitudes (n=34, 3.3%). Themes derived from the #DataSavesLives debate included ethical sharing, proactively engaging the public, coproducing knowledge with the public, harnessing potential, and gaining an understanding of big data research. The Twitter discourse was largely positive toward the campaign. The hashtag is predominantly used by similar-minded Twitter users to share information about big data projects and to spread positive messages about big data research when there are public controversies. The hashtag is generally used by organizations and people supportive of big data research. Tweet authors recognize that the public should be proactively engaged and involved in big data projects. The campaign remains UK centric. The results indicate that the communication around big data research is driven by the professional community and remains 1-way as members of the public rarely use the hashtag.<h4>Conclusions</h4>The results demonstrate the potential of social media but draws attention to hashtag usage being generally confined to "Twitter bubbles": groups of similar-minded Twitter users.
| Item Type: | Article |
|---|---|
| Uncontrolled Keywords: | consumer involvement, patient participation, stakeholder participation, social media, public engagement, campaign, big data, research, trust, tweets, Twitter, perception, usage, users, data sharing, ethics, community, hashtag |
| Divisions: | Faculty of Health and Life Sciences Faculty of Humanities and Social Sciences > School of the Arts Faculty of Humanities and Social Sciences > School of Law and Social Justice Faculty of Health and Life Sciences > Institute of Population Health |
| Depositing User: | Symplectic Admin |
| Date Deposited: | 02 Dec 2022 10:01 |
| Last Modified: | 03 May 2023 13:08 |
| DOI: | 10.2196/38232 |
| Open Access URL: | https://doi.org/10.2196/38232 |
| Related URLs: | |
| URI: | https://livrepository.liverpool.ac.uk/id/eprint/3166483 |
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