DATA FEELS: Digital Objects of Collective Care
The validity or trust in objects relates to the legibility of their design. All the objects I’ve studied were made with what is at hand, and therefore bare inconsistencies. This distinguishes them from interfaces designed for patient use and requiring some measure of compliance. It is their mark of patient labor. Inconsistency is awkward to measure, which is the great frustration for industry attempts to reincorporate extraneous forms of real world data back into evidence based medicine. The objects queer systems of care. They are deviations from accountability.
The design of these boundary negotiating tools earn or dissuade the trust of various parties. Makeshift aesthetics are often devalued by the healthcare industry and consumer/patient culture in favor of black box solutions. Demonstrating the value of makeshift designs, my three case studies are:
1. Open Artificial Pancreas System (OpenAPS): an open source platform with 245+ members hacking digital tracking devices and making data accessible for people with type 1 diabetes.
2. Closed Facebook Group for Hematopoietic Stem Cell Transplantation (HSCT): a private network of 10,000+ members seeking or supporting a non-FDA approved treatment for multiple sclerosis and other autoimmune diseases.
3. Canaries: a private list serve of 120+ members sharing experiences and resources for a variety of chronic autoimmune conditions and engaged with collective care more broadly through their artistic practice.
Patient groups are constantly producing images that demystified the process of technology and treatment. Exposing the process invites new members to join in the work and transfers agency to users as design-in-use.(1)
As Charlotte Lee defined such tools: they are subject to change with use, can be interpreted in a variety of ways and transform from one stage to another.(2) Their malleability allows the protection to move with the needs of the patient. My preferred term for this approach to design is kludgy. Since the 60s, kludgy has been used to describe patchy computer systems made up of poorly matched components.(3) They are inelegant designs that work well but for the wrong reasons. A repair-centered design ethic looks towards the kludgy as signs of mending. By not black-boxing the system but exposing its vulnerabilities, they offer a reality that is ambiguous, complicated and multidirectional. A kludge is open to the possibility of change, alteration, and interaction rather than forestalling any meddling by the end user. It reveals that it’s made up of parts that could be made otherwise.
1 Lucy Suchman, Human-Machine Reconfigurations: Plans and Situated Actions, Cambridge University Press, 2006, 278.
2 Charlotte P. Lee, “Boundary Negotiating Artifacts: Unbinding the Routine of Boundary Objects and Embracing Chaos in Collaborative Work,” Computer Supported Cooperative Work (2007) 16:307-339.
3 Jackson W. Granholm, “How to Design a Kludge,” Datamation, Feb 1962, 30–31.