Promoting Designerly Data Donation through Donor’s Experience Design
Oct 2021 - ongoing
Data are valuable assets for scientific research (Skatova et al. 2014; Gharib 2020). Researchers have shown growing attention to the potential value of these data bringing answers to unknown healthcare domains. Previous research has proved that people are willing to donate their data for the majority of social benefits and individual benefits (Skatova et al. 2014).
Donating personal data in a meaningful way is a novel under-investigated behavior. The willingness of individual donors is a crucial factor to the success of data donation(Gharib 2020). Data privacy and relevant ethical issues shall be addressed adequately to encourage this repository behaviour (Gharib 2020; Krutzinna et al. 2019). Experts suggest bringing trustworthiness and transparency into the data transaction procedure (Bourgeois et al 2018; Krutzinna et al. 2019; Gharib 2020).
Design Researchers have also seen data as a new inspirational design resource. Designers cannot neglect the ubiquity of data as an emerging aspect of their workflow. Latest research has found that combining thin and thick data can enable designers to effectively analyse user behaviours and deliver design solutions (Lu et al. 2021).
Menstrual apps to trace periods are one of the examples that require people who menstruate to input personal data manually. It is a dynamic and fast-growing digital domain that draws researchers’ interests(Levy et al. 2016; Fox et al. 2020; Zampino 2020). However, previous imperial findings were that these apps were not satisfying solutions to fulfil different users needs. Data collected by these apps include both healthcare conditions and sexual activities. Currently, large datasets are assumed to be either missing or siloed in separate healthcare organizations, IT companies. This hinders further scientific analysis and a creative design approach to provide knowledge in this domain. Furthermore, even if the users are willing to donate/input their menstrual data, it is not a one-off act. Long-term input of accurate data is a must to fit research criteria. It is unclear how these apps can succeed to engage users through long periods.
Designerly Data Donation (DDD) is a new advocate by Data-Centric Design(DCD) Lab in TU Delft. It aims to support designers to use rich and thin data as inspiration materials from DDD platform. The platform aims for valuable collaboration, actionable control, and accessible information flow based on open-sourced infrastructure. Period data donation is one of the ongoing research projects to explore designers, researchers use quantitative personal menstrual data with qualitative context data( Designerly Data Donation, 2021). With the data donation approach, the collaborations among designers and donors are to provide insights for designers to use data as design materials into the creative process and provide design solutions in the menstruation research domain. This experiment is also valuable for design educators to understand new skillsets and responsibilities and teach students to prepare for this datafication trend (Lu et al. 2021).
Data donation can be an individual act, a social activity, and a collaboration with donation platforms and receivers. Considering data donation as a relatively new citizen science in its infant phase, Bietz et al. (2019) defines representativeness of Data, incentives and value for donors, data governance and donor protections are regarded as the four main emerging research themes in this underdeveloped field.
Period data wanted on DDD platform include sensitive data, such as personal healthcare conditions or sexual activities. Because designers need rich context data to enrich the creative process and bring valuable designer solutions for “wicked problems”, all these data will NOT be anonymized. This brings opportunities for donors to influence design research and be recognized, rewarded. However, it also brings challenges for donors to agree on DDD concept. It is unclear how potential period data donors perceive individual period data, and their willingness, experience to interact with DDD platform in this rich context. How to reframe this concept for specific early adopter donors who are willing to act and contribute with a persistent manner.
- How do donors perceive designerly menstrual data donation, and reciprocity value based on established Infrastructure?
- What are the sketch of potential early-adopt donors of Period data donation project and how to create donors’ awareness of this project?
- How do Period data donors evaluate donation experience based on trustworthiness, control, secure feeling and motivation?
- How to optimize data donation experience and engage donors in a motivating way during menstruation data donation process?