Victoria Neumann
Nigel Davies
ABSTRACT
The public depends on healthcare institutions to protect and govern medical-related information. However, with increasing security breaches and compliance failures with data protection law, researchers have begun to explore the feasibility of Decentralised Autonomous Organisations (DAOs) as a way of reimagining traditional forms of top-down data governance. In this paper, we describe early findings from the development of a card-based approach for engaging the public in the design of DAOs for collectively governing health data. Following a public workshop, we reflect on how our methodological approach involved laypeople in practical discussions about DAO design elements, such as voting mechanisms. Through group conversations, we observed how values affected the kinds of decentralised organisational structures participants wished to engage in. In particular, our analysis has implications for the future directions of DAO design, by pointing towards flexibility and modularity for voting and proposal interfaces, scalability and balancing power in tokenised communities.
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- Cornelius C. Agbo, Qusay H. Mahmoud, and J. Mikael Eklund. 2019. Blockchain technology in healthcare: a systematic review. Healthcare 7 (2019), 30. Issue 56.Google Scholar
Cross Ref
- E. Baninemeh, S. Farshidi, and S. Jansen. 2023. A decision model for decentralized autonomous organization platform selection: Three industry case studies. Blockchain: Research and Applications 100127 (2023), 24. https://doi.org/10.1016/j.bcra.2023.100127Google ScholarCross Ref
- Rosaline Barbour. 2008. Doing Focus Groups. SAGE, London, UK. Google-Books-ID: TzZTCEAK6N4C.Google Scholar
- Mahmood A. Bazel, Fathey Mohammed, and Mazida Ahmed. 2021. Blockchain Technology in Healthcare Big Data Management: Benefits, Applications and Challenges. In 2021 1st International Conference on Emerging Smart Technologies and Applications (eSmarTA). IEEE, Sana’a, Yemen, 1–8. https://doi.org/10.1109/eSmarTA52612.2021.9515747Google ScholarCross Ref
- Erling Bjögvinsson, Pelle Ehn, and Per-Anders Hillgren. 2012. Design Things and Design Thinking: Contemporary Participatory Design Challenges. Design Issues 28, 3 (2012), 101–116. https://doi.org/10.1162/DESI_a_00165Google ScholarCross Ref
- Jaya Klara Brekke. 2020. Hacker-engineers and Their Economies: The Political Economy of Decentralised Networks and ‘Cryptoeconomics’. New Political Economy 0, 0 (Aug. 2020), 1–14. https://doi.org/10.1080/13563467.2020.1806223 Publisher: Routledge _eprint: https://doi.org/10.1080/13563467.2020.1806223.Google ScholarCross Ref
- Jean-Paul Calbimonte, Orfeas Aidonopoulos, Fabien Dubosson, Benjamin Pocklington, Ilia Kebets, Pierre-Mikael Legris, and Michael Schumacher. 2023. Decentralized semantic provision of personal health streams. Journal of Web Semantics 76 (April 2023), 100774. https://doi.org/10.1016/j.websem.2023.100774Google ScholarDigital Library
- Francisco Maria Calisto, Nuno Nunes, and Jacinto C. Nascimento. 2020. BreastScreening: On the Use of Multi-Modality in Medical Imaging Diagnosis. In Proceedings of the International Conference on Advanced Visual Interfaces(AVI ’20). Association for Computing Machinery, New York, NY, USA, 1–5. https://doi.org/10.1145/3399715.3399744Google ScholarDigital Library
- Francisco Maria Calisto, Carlos Santiago, Nuno Nunes, and Jacinto C. Nascimento. 2021. Introduction of human-centric AI assistant to aid radiologists for multimodal breast image classification. International Journal of Human-Computer Studies 150 (June 2021), 102607. https://doi.org/10.1016/j.ijhcs.2021.102607Google ScholarCross Ref
- Janya Chanchaichujit, Albert Tan, Fanwen Meng, and Sarayoot Eaimkhong. 2019. Blockchain Technology in Healthcare. In Healthcare 4.0: Next Generation Processes with the Latest Technologies, Janya Chanchaichujit, Albert Tan, Fanwen Meng, and Sarayoot Eaimkhong (Eds.). Springer Singapore, Singapore, 37–62. https://doi.org/10.1007/978-981-13-8114-0_3 00000.Google ScholarCross Ref
- Mengting Chang, Qingfei Min, and Zipei Li. 2019. Understanding Members’ Active Participation in a DAO: An Empirical Study on Steemit. In PACIS 2019 Proceedings, Vol. 197. AIS Electronic Library (AISeL), X’ian, China, 9.Google Scholar
- Christian Heath, Jon Hindmarsh, and Paul Luff. 2010. Analysing Interaction: video, ethnography and situated conduct. SAGE Publications, Inc., London. https://www.semanticscholar.org/paper/Analysing-Interaction%3A-video%2C-ethnography-and-Heath-Hindmarsh/cbc8635a6fc54597c680e7d17439ab63ba35a70cGoogle Scholar
- Amrita Dhillon, Grammateia Kotsialou, Peter McBurney, and Luke Riley. 2019. Introduction to Voting and the Blockchain: some open questions for economists. CAGE Online Working Paper Series. Competitive Advantage in the Global Economy (CAGE). https://econpapers.repec.org/paper/cgewacage/416.htmGoogle Scholar
- Youssef Faqir-Rhazoui, Javier Arroyo Gallardo, Samer Hassan, Youssef Faqir-Rhazoui, Javier Arroyo Gallardo, and Samer Hassan. 2021. A Scalable Voting System: Validation of Holographic Consensus in DAOstack. https://eprints.ucm.es/id/eprint/62303/Google Scholar
- Manfred Faßler. 2006. Communities of Projects. In Lesebuch Projekte: Vorgriffe, Ausbrüche in die Ferne, Christian Reder (Ed.). Springer, Vienna, 141–169. https://doi.org/10.1007/3-211-38096-5_9Google ScholarCross Ref
- Ulrike Felt, Simone Schumann, Claudia G. Schwarz, and Michael Strassnig. 2014. Technology of imagination: a card-based public engagement method for debating emerging technologies. Qualitative Research 14, 2 (2014), 233–251. https://doi.org/10.1177/1468794112468468 _eprint: https://doi.org/10.1177/1468794112468468.Google ScholarCross Ref
- Marcus Foth. 2017. The promise of blockchain technology for interaction design. In Proceedings of the 29th Australian Conference on Computer-Human Interaction(OZCHI ’17). Association for Computing Machinery, New York, NY, USA, 513–517. https://doi.org/10.1145/3152771.3156168Google ScholarDigital Library
- Paul Galdas. 2017. Revisiting Bias in Qualitative Research: Reflections on Its Relationship With Funding and Impact. International Journal of Qualitative Methods 16, 1 (2017), 1609406917748992. https://doi.org/10.1177/1609406917748992 Publisher: SAGE Publications Inc.Google ScholarCross Ref
- Melanie Goisauf and Anna P Durnová. 2019. From engaging publics to engaging knowledges: Enacting “appropriateness” in the Austrian biobank infrastructure. Public Understanding of Science 28, 3 (April 2019), 275–289. https://doi.org/10.1177/0963662518806451 Publisher: SAGE Publications Ltd.Google ScholarCross Ref
- Eduardo Gómez. 2016. The DAO Undergoes Low Voting Turnout. https://themerkle.com/the-dao-undergoes-low-voting-turnout/Google Scholar
- Samer Hassan and Primavera De Filippi. 2021. Decentralized Autonomous Organization. Internet Policy Review 10, 2 (2021), 1–10. https://doi.org/10.14763/2021.2.1556 Publisher: Berlin: Alexander von Humboldt Institute for Internet and Society.Google ScholarCross Ref
- HIPAA. 2022. Healthcare Data Breach Statistics - Latest Data for 2022. https://www.hipaajournal.com/healthcare-data-breach-statisticsGoogle Scholar
- I.E. Khairuddin, C. Sas, and C. Speed. 2019. BlocKit: A physical kit for materializing and designing for blockchain infrastructure. In Proceedings of the 2019 ACM Designing Interactive Systems Conference. ACM, San Diego, CA, USA, 1449–1462. https://doi.org/10.1145/3322276.3322370Google ScholarDigital Library
- Seyednima Khezr, Md Moniruzzaman, Abdulsalam Yassine, and Rachid Benlamri. 2019. Blockchain technology in healthcare: A comprehensive review and directions for future research. Applied Sciences (Switzerland) 9, 9 (2019), 28. https://doi.org/10.3390/app9091736Google ScholarCross Ref
- Ulrike Kissmann (Ed.). 2009. Video interaction analysis: methods and methodology. Peter Lang, Frankfurt am Main ; New York. OCLC: 311755462.Google Scholar
- Grammateia Kotsialou and Luke Riley. 2020. Incentivising Participation in Liquid Democracy with Breadth-First Delegation. In Proceedings of the 19th International Conference on Autonomous Agents and MultiAgent Systems (Auckland, New Zealand) (AAMAS ’20). International Foundation for Autonomous Agents and Multiagent Systems, Richland, SC, 638–644.Google ScholarDigital Library
- Yong Ming Kow and Caitlin Lustig. 2018. Imaginaries and Crystallization Processes in Bitcoin Infrastructuring. Computer Supported Cooperative Work (CSCW) 27, 2 (April 2018), 209–232. https://doi.org/10.1007/s10606-017-9300-2Google ScholarDigital Library
- Thomas Lockwood. 2009. Design Thinking: Integrating Innovation, Customer Experience, and Brand Value. Allworth Press, New York, USA. https://openlibrary.telkomuniversity.ac.id/pustaka/117516/design-thinking-integrating-innovation-customer-experience-and-brand-value.htmlGoogle Scholar
- Caitlin Lustig. 2019. Intersecting Imaginaries: Visions of Decentralized Autonomous Systems. Proceedings of the ACM on Human-Computer Interaction 3, CSCW (Nov. 2019), 210:1–210:27. https://doi.org/10.1145/3359312Google ScholarDigital Library
- Andrea Margheri, Massimiliano Masi, Abdallah Miladi, Vladimiro Sassone, and Jason Rosenzweig. 2020. Decentralised provenance for healthcare data. International Journal of Medical Informatics 141 (Sept. 2020), 104197. https://doi.org/10.1016/j.ijmedinf.2020.104197Google ScholarCross Ref
- Deborah Maxwell, Chris Speed, and Dug Campbell. 2015. ’Effing’ the ineffable: opening up understandings of the blockchain. In Proceedings of the 2015 British HCI Conference(British HCI ’15). Association for Computing Machinery, New York, NY, USA, 208–209. https://doi.org/10.1145/2783446.2783593Google ScholarDigital Library
- McFarlane Ben. 2019. Data Trusts and Defining Property. https://www.law.ox.ac.uk/research-and-subject-groups/property-law/blog/2019/10/data-trusts-and-defining-propertyGoogle Scholar
- Richard Milne, Annie Sorbie, and Mary Dixon-Woods. 2021. What can data trusts for health research learn from participatory governance in biobanks?Journal of Medical Ethics 48, 5 (2021), 6. Publisher: Institute of Medical Ethics.Google Scholar
- Dave Murray-Rust, Chris Elsden, Bettina Nissen, Ella Tallyn, Larissa Pschetz, and Chris Speed. 2021. Blockchain and Beyond: Understanding Blockchains through Prototypes and Public Engagement. ACM Transactions on Computer-Human Interaction 29, 5 (Dec. 2021), 73. https://doi.org/10.1145/3503462 arXiv:2112.11891.Google ScholarDigital Library
- Kelsie Nabben. 2022. DAO Design Patterns: Components that constitute "Decentralized Autonomous Organizations". https://medium.com/block-science/dao-design-patterns-1193a694fb55Google Scholar
- Lisa P. Nathan, Predrag V. Klasnja, and Batya Friedman. 2007. Value scenarios: a technique for envisioning systemic effects of new technologies. In CHI ’07 Extended Abstracts on Human Factors in Computing Systems(CHI EA ’07). Association for Computing Machinery, New York, NY, USA, 2585–2590. https://doi.org/10.1145/1240866.1241046Google ScholarDigital Library
- Victoria Neumann, Gail Davidge, Mike Harding, James Cunningham, Nigel Davies, Sarah Devaney, Gary Leeming, Søren Holm, and John Ainsworth. 2023. Examining public views on decentralised health data sharing. PLOS ONE 18, 3 (March 2023), e0282257. https://doi.org/10.1371/journal.pone.0282257 Publisher: Public Library of Science.Google ScholarCross Ref
- Bettina Nissen, Ella Tallyn, and Kate Symons. 2019. Tangibly understanding intangible complexities: Designing for distributed autonomous organizations. Ubiquity: The Journal of Pervasive Media 6, 1 (Nov. 2019), 47–63. https://doi.org/10.1386/ubiq_00007_1Google ScholarCross Ref
- Mikael Ohrling, Karin Solberg Carlsson, and Mats Brommels. 2022. No man is an island: management of the emergency response to the SARS-CoV-2 (COVID-19) outbreak in a large public decentralised service delivery organisation. BMC Health Services Research 22, 1 (March 2022), 371. https://doi.org/10.1186/s12913-022-07716-wGoogle ScholarCross Ref
- Jonathan Rankin, Chris Elsden, Ian Sibbald, Alan Stevenson, John Vines, and Chris Speed. 2020. PizzaBlock: Designing artefacts and roleplay to understand decentralised identity management systems. In DIS ’20: Proceedings of the 2020 ACM Designing Interactive Systems Conference. ACM Designing Interactive Systems 2020, Eindhoven, Netherlands, 1593–1606. https://doi.org/10.1145/3357236.3395568Google ScholarDigital Library
- Ellie Rennie, Michael Zargham, Joshua Tan, Luke Miller, Jonathan Abbott, Kelsie Nabben, and Primavera De Filippi. 2022. Toward a Participatory Digital Ethnography of Blockchain Governance. Qualitative Inquiry 28, 7 (2022), 10778004221097056. https://doi.org/10.1177/10778004221097056Google ScholarCross Ref
- Nathan Schneider. 2019. Decentralization: an incomplete ambition. Journal of Cultural Economy 12, 4 (July 2019), 265–285. https://doi.org/10.1080/17530350.2019.1589553 Publisher: Routledge _eprint: https://doi.org/10.1080/17530350.2019.1589553.Google ScholarCross Ref
- The Ontology Team. 2021. Using Reputation in DAO Governance. https://medium.com/ontologynetwork/using-reputation-in-dao-governance-7307eb3f3827Google Scholar
- Christopher Tozzi. 2019. Decentralizing democracy: approaches to consensus within blockchain communities. Teknokultura. Revista de Cultura Digital y Movimientos Sociales 16, 2 (Oct. 2019), 181–195. https://doi.org/10.5209/tekn.64523Google ScholarCross Ref
- Shuai Wang, Liwei Ouyang, Yong Yuan, Xiaochun Ni, Xuan Han, and Fei-Yue Wang. 2019. Blockchain-Enabled Smart Contracts: Architecture, Applications, and Future Trends. IEEE Transactions on Systems, Man, and Cybernetics: Systems 49, 11 (Nov. 2019), 2266–2277. https://doi.org/10.1109/TSMC.2019.2895123 Conference Name: IEEE Transactions on Systems, Man, and Cybernetics: Systems.Google ScholarCross Ref
- Mikael Wiberg. 2014. Methodology for materiality: interaction design research through a material lens. Personal and Ubiquitous Computing 18, 3 (2014), 625–636. https://doi.org/10.1007/s00779-013-0686-7Google ScholarDigital Library
- Yongjing Xie, Zhihong Li, and Xiaoying Xu. 2021. Addressing Wealth Inequality Problem in Blockchain-Enabled Knowledge Community with Reputation-Based Incentive Mechanism. In ICEB 2021 Proceedings. AIS Electronic Library (AISeL) AIS Electronic Library (AISeL), Nanjing, China, 12.Google Scholar
- Michael Zargham and Kelsie Nabben. 2022. Aligning ‘Decentralized Autonomous Organization’ to Precedents in Cybernetics. https://doi.org/10.2139/ssrn.4077358Google ScholarCross Ref
Index Terms
- DAOing It as a Collective: Designing the Future of Decentralised Personal Health Data Sharing
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