Skip to main content

Research From The Collective

  1. The Light Collective. Tangled in the Web: Patient Safety & Privacy Concerns When Seeking Knowledge, Community, and Support Online. The Light Collective; September 2024.

  2. Downing A, Perakslis E. Health advertising on Facebook: Privacy and policy considerations. Patterns (N Y). 2022 Aug 15;3(9):100561. doi: 10.1016/j.patter.2022.100561. PMID: 36124307; PMCID: PMC9481952.

  3. Perakslis ED. Beyond privacy: A deeper understanding of the internet is required to protect digitized trial participants. Contemp Clin Trials. 2022 Jul;118:106786. doi: 10.1016/j.cct.2022.106786. Epub 2022 May 15. PMID: 35584764

  4. Patel S, Goldsack J, Cordovano G, Downing A, Fields K, Geoghegan C, Grewal U, Nieva J, Patel N, Rollison D, Sah A, Said M, Van De Keere I, Way A, Wolff-Hughes D, Wood W, Robinson E Advancing Digital Health Innovation in Oncology: Priorities for High-Value Digital Transformation in Cancer Care J Med Internet Res 2023;25:e43404

  5. Bitterman, Danielle S., et al. “Promise and Perils of Large Language Models for Cancer Survivorship and Supportive Care.” Journal of Clinical Oncology (2024): JCO-23. https://doi.org/10.1200/JCO.23.0243

  6. NEW PREPRINT: Downing A, et al. Banned Tracking Technology Use Among Medical Device, Pharmacy, and Hospital Webforms: A Cross-Sectional Study. JMIR Preprints. 15/03/2024:55646. DOI: 10.2196/preprints.55646. URL: https://preprints.jmir.org/preprint/55646

Recommended Citations

  1. Carroll, S.R., Herczog, E., Hudson, M. et al. Operationalizing the CARE and FAIR Principles for Indigenous data futures. Sci Data 8, 108 (2021). https://doi.org/10.1038/s41597-021-00892-0

  2. Carroll SR, Garba I, Plevel R, Small-Rodriguez D, Hiratsuka VY, Hudson M, Garrison NA. Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes. Front Genet. 2022 Mar 21;13:823309. doi: 10.3389/fgene.2022.823309. PMID: 35386282; PMCID: PMC8977641.

  3. Dolan DD, Lee SS, Cho MK. Three decades of ethical, legal, and social implications research: Looking back to chart a path forward. Cell Genom. 2022 Jul 13;2(7):100150. doi: 10.1016/j.xgen.2022.100150. Epub 2022 Jun 27. PMID: 35935917; PMCID: PMC9352173.

  4. Patrick-Lake B, Goldsack JC. Mind the Gap: The Ethics Void Created by the Rise of Citizen Science in Health and Biomedical Research. Am J Bioeth. 2019 Aug;19(8):1-2. doi: 10.1080/15265161.2019.1639389. PMID: 31339830

Press

  1. This breast cancer advocate says she discovered a Facebook flaw that put the health data of millions at risk, CNN, 2020

  2. Health Sites Let Ads Track Visitors Without Telling Them, Wired, February 2022

  3. Facebook Is Receiving Sensitive Medical Information from Hospital Websites, June 2022

  4. ‘Out of control’: Dozens of telehealth startups sent sensitive health information to big tech companies, STAT News, December 2022

  5. A cyberattack on one hospital can disrupt an entire network of medical providers.  NPR, June 2023

  6. Your Medical Data Is Code Blue, January 2024, Wired

Policy

  1. A Guide To Negotiating Collective Digital Rights, The Light Collective

  2. On Forging a Path To Digital Rights, Digital Public

  3. CARE Principles For Indigenous Data Governance, Global Indiginous Data Alliance

  4.  National Academy of Medicine: Artificial Intelligence Code of Conduct For Health And Medicine