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- Data donation models for healthcare and biomedical research
- Ethnographic methods for the situated study of data practices
- Public participation in data infrastructures and connected struggles over expertise
- Platformization and appification of health data infrastructures
This dissertation project explores novel health data governance arrangements, asking how their designers envision and develop “good” governance that can protect people’s interests in their data while also serving a collective benefit. It particularly studies how data governance arrangements enact or displace certain values when asking people to give away their health data for the purpose of a common good.
The dissertation studies recent health data exchange platforms (Riso et al. 2017) that center individuals as controllers of their data and involve them in different data exchanges to support biomedical research: donations, sharing, and shareholding of health data. Existing data governance research often develops ideal models of health data exchange architectures (Micheli et al. 2020; Wernick, Olk, and von Grafenstein 2020; Winickoff and Winickoff 2003). Often, such scholars define a priori what kinds of values these data governance models should serve (e.g. individual, collective, or public values). Little work has studied how health data sharing platforms are accomplished in practice, or the values that different modes of mobilizing data – from donating, to sharing and investing – enact, displace, and negotiate (Dussauge, Helgesson, and Lee 2015; Kornberger et al 2015).
The dissertation adds to literature on pragmatist valuation studies and data journeys (Leonelli and Tempini 2020) by developing an understanding of different modes of data mobilization, manifested in data sourcing (Jarvenpaa and Markus 2020), data flows, and their related valuation strategies. The dissertation combines pragmatist philosophy with insights from STS, platform studies, media studies, and data studies to develop an analytical vocabulary for how health data exchange platforms design modes of data mobilization on the infrastructural level (e.g. through APIs, exchange protocols, apps and data uploaders, as well as mechanisms to ‘cut’ and control data access).
It then connects each mode of mobilization to strategies of legitimation and valuation, whereby the value of health data for individuals and a broader collective is enacted through ongoing public experimentation, institutional public benefit purposes, and projections of value into the future (Hoeyer 2019) and onto a vague public (Hayden 2007). The dissertation finds that health data exchange platforms conceptualise and balance values around data not only in the way they mobilise data (e.g. retrieving large amounts of data from people’s data accounts as opposed to minimising access to specific data points), but also in their design of consent which is tied to purposes and related valuation strategies. This provokes questions not only about who determines the purpose of data use for whom, and to do what. It also begs questions as to how purpose enacts and legitimises the (promissory) values of a health data exchange platform and how it is governed along multiple (possibly conflicting) logics.
- 09 2014 – 08 2015: MA New Media & Digital Culture, University of Amsterdam
- 01 2012 – 06 2012: Sciences économiques, Université Montpellier 1
- 09 2009 – 09 2012: BA Media Economics (mit Auszeichnung), Stuttgart Media University
- Lämmerhirt, Danny, Ana Brandusescu, Natalia Domagala, and Patrick Enaholo (eds. forthcoming). The Social Impact of Open Data in 2019.
- Pollock, Rufus and Danny Lämmerhirt (forthcoming): „The State of Open Data: European Union“.
- Lämmerhirt, Danny, and Ana Brandusescu (forthcoming) “The State of Open Data: Open Data Measurement”.
- Gray, Jonathan, and Danny Lämmerhirt (2019): „Making Data Public? The Open Data Index as Participatory Device“; In: Daly, Angela; S. Kate Devitt and Monique Mann (Eds.) Good Data. Institute of Network Cultures
- Lämmerhirt, Danny (2019): „Open Data Publication of Core Datasets in Africa: Findings From the Africa Open Data Index“, In: Van Belle, Jean Paul: The Africa Data Revolution Report 2018. Status and Emerging Impact of Open Data In Africa. Available here.
White Papers and Working Papers
- Lämmerhirt, Danny, Jonathan Gray, Tommaso Venturini and Axel Meunier (2018): Advancing Sustainability together? Citizen-generated data and the Sustainable Development Goals.
- Lämmerhirt, Danny, Jonathan Gray, Tommaso Venturini and Axel Meunier (2018): Choosing And Engaging With Citizen-generated Data. A Guide For Governments To Engage With Citizen-generated Data.
- Brandusescu, Ana and Danny Lämmerhirt (2018): Open Data Charter Measurement Guide.
- Lämmerhirt, Danny (2017): Avoiding Data Use Silos: How Governments Can Simplify The Open Licensing Landscape.
- Lämmerhirt, Danny, Mor Rubinstein and Oscar Montiel (2017): The State of Open Government Data in 2017.
- “Data and the City: How Can Public Data Infrastructures Change Lives in Urban Regions?”.
- Jameson, Shazade, Danny Lämmerhirt and Eko Prasetyo (2017): Acting Locally, Monitoring Globally. How To Link Citizen-Generated Data To The SDGs.
- Lämmerhirt, Danny, Shazade Jameson and Eko Prasetyo (2017): From Evidence to Action: Turning Citizen-Generated Data Into Actionable Information To Improve Decision-Making.
- Lämmerhirt, Danny, Shazade Jameson and Eko Prasetyo (2016): Making Citizen-Generated Data Work: Towards a Framework Strengthening Collaborations Between Citizens, Civil Society Organisations, And Others.
- Lämmerhirt, Danny, Jonathan Gray, Stuart Lawson and Samuel Moore (2016): Revealing the True Costs of Gold OA. Towards a Public Data Infrastructure Of Scholarly Publishing Costs.
- Moore, Samuel, Jonathan Gray and Danny Lämmerhirt (2016): Briefing Paper: Infrastructures for Open Scholarly Communication.
- Lämmerhirt, Danny (2016): Disciplinary Differences In Opening Research Data.
- The Impact of Open Data in European Cities. Policy brief for the Council of the European Union.
- Gray, Jonathan and Danny Lämmerhirt (2015): Changing What Counts: How Can Citizen-Generated And Civil Society Data Be Used As An Advocacy Tool To Change Official Data Collection?
- Lämmerhirt, Danny, Rebecca Firth, Omar Seidu, Zachary Mwangi, and Jenna Slotin (2018): Citizen-generated data: methodology, scale, and confidence in using CGD to measure the SDGs. Presented at UN World Data Forum, Dubai
- Lämmerhirt, Danny, Katya Abazajian and Jorge Florez (2018): Mapping the methods of open data use research. Presented at Open Data Research Symposium, Buenos Aires
- Lämmerhirt, Danny, Ana Brandusescu and Stefaan Verhulst (2018): What Does Open Data
- Governance Look Like? Presented at Open Data Research Symposium, Buenos Aires
- Lämmerhirt, Danny (2018): The State of open data in Western Europe. Presented at International Open Data Conference, Buenos Aires
- Lämmerhirt, Danny (2018): Putting Open Data Measurements to use. Presented at International Open Data Conference, Buenos Aires
- Lämmerhirt, Danny (2017): Data and the City: How The Public Uses Data To Drive Urban Transformation (Keynote). Presented at European Commission, DG Devco
- Lämmerhirt, Danny and Sander van der Waal (2017): The State of Open Licensing in 2017. Presented at CopyCamp 2017
- Lämmerhirt, Danny (2017): What Does Relevant Data for Civil Society Even Mean? Presented at TICTeC 2017, Florence
- Lämmerhirt, Danny (2017): Making Citizen-Generated Data Work For Sustainable Development: Incentives, Obstacles And The Way Forward. Presented at United Nations World Data Forum, Cape Town.
- Lämmerhirt, Danny and Stefaan Verhulst (2016): Open Data Measurement and Evaluation. Presented at International Open Data Conference, Madrid