Project Overview: Participatory Ecosystem for Public Health
Building data worlds:
The promise of Web 2.0 goes beyond just that the consumers of old media are also producers of the new media. The participatory, highly networked nature of the internet in its current form paves way for a data-driven, engaged future. Data is no longer an entity of contestation, but a shared resource. The concept of Data Commons can then be formulated as ‘comprised of the disparate and diffuse collections of data made broadly available to researchers with only minimal barriers to entry’( Yakowitz, 2011). However, the existence of the data commons is accompanied by a socio-political imaginary of how the data is used. Data is no longer just a representation of reality, but a building block for new imagined realities. Jonathan Gray responds to this imaginary through the concept of ‘Data Worlds’ which ‘examine[s] what open data initiatives do and do not do, and how they might be done differently (Gray 2018)’. In a project done in collaboration with the GGD, the public health service in Amsterdam, we explore how to build a data world which can create a participatory ecosystem for public health data.
How public is ‘public health’?
The problem, in its practical sense, was phrased as ‘How can we use storytelling to visualize public health & environmental data in order to better understand their interconnectedness?’. Naturally, this called for an examination of public health, and the extent to which the public sphere is inaccessible. The problem of data interconnectedness is a statement about its usage. In a rigid mathematical and statistical sense, correlations between environmental and public health data are hard to forge given the current data. To do so, we’d require different building blocks for a different data world.
What the current building blocks of the public health system allow us to construct, are connections between the datasets at hand, the people that use them, and the populace they’re intended to influence. A simple mapping of stakeholders would show:
A) policymakers as primary targets for the data at large. A policymaker can use the data to make neighborhood-level decisions on whether more green-space is needed, or whether a certain marginalized demographic suffers more chronic conditions than the other. A well-constructed data world would aid policymakers to make informed decisions about their subjected publics.
B) The general public as the pulse and oversight of the data. The public health monitor data doesn’t only represent a snapshot of public health. It also serves as a marker for the future of the different public(s). Prompting self-interested populations to not only engage but contribute to the data which reflects and determines their wellbeing is a crucial pillar of the wholistic data world. The public can engage with the dataset by filling out missing data, inventorying discussions around trends and dilemmas and by sharing stories which contribute to the data’s depth.
c) GGD researchers as gatekeepers of the data. Institutionally, the GGD is responsible for the collection and dissemination of public health data. GGD researchers prepare reports on the state of public health. The reports serve to provide context, priority, and insight into the swarms of the monitor data. This serves both the paradigms of ‘thick’ and ‘deep’ data, which refer to a process of enriching data with context, narrative, and qualitative user-centered research. Thick and seep data shift the focus from the sole size of the data sets, into the usability and readability of the data. The data world should help the GGD produce and curate thick data, a process which will not improve the reliability of the data but will open up new alleyways of engagement with the public and the policymakers.
We can then conclude that there are ruptures between the data, its claimed publicness, and the audience(s) in which it serves. A public data world should address and treat those ruptures.
The data world:
In a quest to create a more connected data world in the case of public health data, we set a few design principles:
1) the data must be accessible for the public who use it.
2) the data must tell stories.
3) the data world must allow the data to evolve and for new users to develop
3) the data world is self-critical.
After an iterative design/research process, documented in the following articles [1] [2] [3] [4], we created a data world represented by the following connections:
The Prototype
The outcome of our 20-week investigative effort was a prototype of a platform through which we can construct our data world. The platform consists of four elements: An interactive comparative metrics visualization, district overviews, curated reports and a VR installation to collect perceptions.
- The interactive visualization mainly serves the function of prompting users to explore new connections between datasets, simply by interjecting datasets from different sources. It serves to fix the rupture between the environmental data and the public health monitor data, without having to force correlations.
- The public policy dashboard, on the other hand, is designed to serve the policymaker. It gives an overview of the public health trends in a neighborhood, matching historical data with perception data, whilst giving policymakers a data-driven tip on what their next policy decision might need to cover. This ultimately provides a birdseye vantage point on public health.
- To ‘deepen’ and ‘thicken’ reports, the prototype also includes curated reports. Such reports are curated by GGD professionals and include profiles of different health care issues affecting different demographics. They contain more information than just trends or perception data, but also contain information about the severity of the condition, historical considerations, case studies, recommendations and links to civil society organization tackling the same issue.
- To physicalize the monitor data, and bring it closer to the public which it serves, a VR installation was created. Users can interact with a physical installation of a map of Amsterdam. By scanning each district with their phones, users can give insight into the public health challenges their city faces. The results are then sent back to the website for policymakers to use as part of a neighborhood monitor, or for GGD professionals to use in a curated report.
The prototype is by no means comprehensive nor complete, but its a step closer to the data world we need to build. Despite adopting a constructive and a generally positivist approach, it is not visibly self-critical; that is, the biases that are inherent in the data and the connections which are made are not made explicit. A future work and a supplement of this project would be a ‘map of bias’ of the data world, cataloging different data and platform-based biases.
Special thanks to Dania Awin, Charlotte Petertil, Sila Ünal, Merlijn and Diego Lopez for making this work possible, and for nourishing this collaboration.
Bibliography:
Gray, Jonathan. “Three aspects of data worlds.” Krisis: Journal for Contemporary Philosophy 1 (2018): 3–17.
Yakowitz, Jane. “Tragedy of the data commons.” Harv. JL & Tech. 25 (2011):1.
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