{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T17:28:08Z","timestamp":1777397288850,"version":"3.51.4"},"reference-count":10,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2018,8,2]],"date-time":"2018-08-02T00:00:00Z","timestamp":1533168000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2018,8,2]],"date-time":"2018-08-02T00:00:00Z","timestamp":1533168000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["npj Digital Med"],"abstract":"<jats:title>Abstract<\/jats:title><jats:p>We investigated if participants in social media surveillance studies could be reverse identified by reviewing all articles published on PubMed in 2015 or 2016 with the words \u201cTwitter\u201d and either \u201cread,\u201d \u201ccoded,\u201d or \u201ccontent\u201d in the title or abstract. Seventy-two percent (95% CI: 63\u201380) of articles quoted at least one participant\u2019s tweet and searching for the quoted content led to the participant 84% (95% CI: 74\u201391) of the time. Twenty-one percent (95% CI: 13\u201329) of articles disclosed a participant\u2019s Twitter username thereby making the participant immediately identifiable. Only one article reported obtaining consent to disclose identifying information and institutional review board (IRB) involvement was mentioned in only 40% (95% CI: 31\u201350) of articles, of which 17% (95% CI: 10\u201325) received IRB-approval and 23% (95% CI:16\u201332) were deemed exempt. Biomedical publications are routinely including identifiable information by quoting tweets or revealing usernames which, in turn, violates ICMJE ethical standards governing scientific ethics, even though said content is scientifically unnecessary. We propose that authors convey aggregate findings without revealing participants\u2019 identities, editors refuse to publish reports that reveal a participant\u2019s identity, and IRBs attend to these privacy issues when reviewing studies involving social media data. These strategies together will ensure participants are protected going forward.<\/jats:p>","DOI":"10.1038\/s41746-018-0036-2","type":"journal-article","created":{"date-parts":[[2018,7,12]],"date-time":"2018-07-12T11:14:48Z","timestamp":1531394088000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":113,"title":["Don\u2019t quote me: reverse identification of research participants in social media studies"],"prefix":"10.1038","volume":"1","author":[{"given":"John W.","family":"Ayers","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Theodore L.","family":"Caputi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Camille","family":"Nebeker","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0422-2474","authenticated-orcid":false,"given":"Mark","family":"Dredze","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2018,8,2]]},"reference":[{"key":"36_CR1","doi-asserted-by":"publisher","first-page":"1399","DOI":"10.1001\/jama.2014.1505","volume":"311","author":"JW Ayers","year":"2014","unstructured":"Ayers, J. W., Althouse, B. M. & Dredze, M. Could behavioral medicine lead the web data revolution? JAMA 311, 1399\u20131400 (2014).","journal-title":"JAMA"},{"key":"36_CR2","first-page":"1","volume":"9","author":"MJ Paul","year":"2017","unstructured":"Paul, M. J. & Dredze, M. Social monitoring for public health. Synth. Lect. Inf. Concepts, Retr., Serv. 9, 1\u2013183 (2017).","journal-title":"Synth. Lect. Inf. Concepts, Retr., Serv."},{"key":"36_CR3","doi-asserted-by":"crossref","unstructured":"Benton A., Coppersmith G., Dredze M. Ethical Research Protocols for Social Media Health Research. EACL Workshop on Ethics in Natural Language Processing. 94. https:\/\/www.cs.jhu.edu\/~mdredze\/publications\/ethicsnlp_2017.pdf. Accessed 5 Oct 2017.","DOI":"10.18653\/v1\/W17-1612"},{"key":"36_CR4","doi-asserted-by":"publisher","first-page":"298","DOI":"10.1016\/j.healthpol.2013.02.006","volume":"110","author":"R McKee","year":"2013","unstructured":"McKee, R. Ethical issues in using social media and health care research. Health Policy 110, 298\u2013301 (2013).","journal-title":"Health Policy"},{"key":"36_CR5","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.3617","volume":"16","author":"M Conway","year":"2014","unstructured":"Conway, M. Ethical issues in using Twitter for public health surveillance and research: developing a taxonomy of ethical concepts from the research literature. J. Med. Internet Res. 16, e290, https:\/\/doi.org\/10.2196\/jmir.3617 (2014).","journal-title":"J. Med. Internet Res."},{"key":"36_CR6","doi-asserted-by":"publisher","first-page":"e195","DOI":"10.2196\/jmir.7082","volume":"19","author":"S Golder","year":"2017","unstructured":"Golder, S., Ahmed, S., Norman, G. & Booth, A. Attitudes toward the ethics of research using social media: A systematic review. J. Med. Internet Res. 19, e195 (2017).","journal-title":"J. Med. Internet Res."},{"key":"36_CR7","doi-asserted-by":"publisher","unstructured":"Arigo, D., Pagoto, S., Carter-Harris, L., Lillie, S., Nebeker, C. Using social media for health research: How to avoid common pitfalls in recruitment, intervention and research ethics. Digi. Health. (2018). (in production) https:\/\/doi.org\/10.1177\/2055207618771757","DOI":"10.1177\/2055207618771757"},{"key":"36_CR8","doi-asserted-by":"publisher","first-page":"266","DOI":"10.1080\/23294515.2017.1403980","volume":"8","author":"C Nebeker","year":"2017","unstructured":"Nebeker, C. et al. Ethical and regulatory challenges of research using pervasive sensing and other emerging technologies: IRB perspectives. AJOB Empir. Bioeth. 8, 266\u2013276 (2017).","journal-title":"AJOB Empir. Bioeth."},{"key":"36_CR9","unstructured":"International Committee of Medical Journal Editors. Recommendations for the conduct, reporting, editing, and publication of scholarly work in medical journals. (2016) December. http:\/\/www.icmje.org\/icmje-recommendations.pdf. Accessed 5 Oct 2017."},{"key":"36_CR10","unstructured":"Schmidt, S. Harvard Withdraws 10 Acceptances for \u2018Offensive\u2019 Memes in Private Group Chat. https:\/\/www.washingtonpost.com\/news\/morning-mix\/wp\/2017\/06\/05\/harvard-withdraws-10-acceptances-for-offensive-memes-in-private-chat\/?utm_term=.8def30e9eeee. Accessed 5 Oct 2017."}],"container-title":["npj Digital Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.nature.com\/articles\/s41746-018-0036-2.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.nature.com\/articles\/s41746-018-0036-2","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.nature.com\/articles\/s41746-018-0036-2.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,12,21]],"date-time":"2022-12-21T12:39:41Z","timestamp":1671626381000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.nature.com\/articles\/s41746-018-0036-2"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,8,2]]},"references-count":10,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2018,12]]}},"alternative-id":["36"],"URL":"https:\/\/doi.org\/10.1038\/s41746-018-0036-2","relation":{},"ISSN":["2398-6352"],"issn-type":[{"value":"2398-6352","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,8,2]]},"assertion":[{"value":"28 January 2018","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"29 April 2018","order":2,"name":"revised","label":"Revised","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"10 May 2018","order":3,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"2 August 2018","order":4,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"The authors declare no competing interests.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"30"}}