“HIV saved My life”: toward a translational model of design research through participatory design in public history and public health

Abstract

Design research and practice have multiple roles to play in articulating social and political issues related to public health. One such opportunity exists in interdisciplinary collaborations that extend beyond ‘design’ and ‘health’ disciplines and include historical methods of collection and interpretation. This article dissects the intentions and design-enabled methods behind an ongoing public history project on American women living with HIV. Participatory design methods and practical design methods have played distinct roles in the project. Maintaining a distinction between the two has helped leverage the value of both. Meanwhile, partnering participatory design with public history has generated a variety of hybrid methods for working with a marginalized community. These methods have operated to identify structural barriers to health—without eviscerating personal experiences of those barriers—in direct collaboration with participants whose medical status has a stigmatizing social impact. This case study is situated against shifting American political dynamics related to HIV/AIDS. Finally, the case study’s layered approach is cast as a translational model of design research. This model is defined by the integration of basic research, applied interdisciplinary research, and community-engaged advocacy—all of which are activated through the interplay of design research and design practice.

Keywords:

• Participatory design
• public history
• public health
• translational design
• HIV/AIDS

Notes

Disclosure statement

No potential conflict of interest was reported by the author.

Notes

1 The general concept is to apply multiple methods for conducting basic research, methods for applying basic research methods to studies with people and research aimed at enhancing best practices in the community (Rubio et al. 2018). In the case of this project, the long-term aims of the research are geared toward improved public health through local forms of advocacy, awareness, and engagement with community collaborators.

2 See the Centers for Disease Control website, accessed 27 October 2017, https://www.cdc.gov/hiv/group/gender/women/index.html#refd.

3 Brier, Jennifer, and WIHS Chicago 2015. I’m Still Surviving: An Oral History of the Women’s Interagency HIV Study in Chicago, 110.

4 Ibid, 41.

5 Ibid, 10.

6 Ibid, 58.

7 Ibid, 119.

8 Ibid, 63.

9 A method from the Digital Humanities, “distant reading” refers to approaches of aggregating and analysing massive amounts of data from a body of literary texts, rather than reading those texts themselves—referred to as ‘close reading’ (Moretti 2007).

10 Brier, Jennifer, and STAR Program, SUNY Downstate 2018. I’m A Challenger: An Oral History of the Women’s Interagency HIV Study in Brooklyn, 21.

11 Brier, Jennifer, and WIHS Chicago 2015. I’m Still Surviving…, 7.

12 Ibid, 25.

13 Brier, Jennifer, and WIHS Chicago 2015. I’m Still Surviving…, 126.

Additional information

Funding

This work was supported by MAC AIDS Fund; University of Illinois at Chicago Chancellor’s Discovery Fund; Nathaniel Cummings Foundation

Notes on contributors

Matthew Wizinsky

Matthew Wizinsky is a designer, educator, and researcher. His creative and research projects live at various intersections of participatory design, interaction design, exhibition design, and speculative design. As a researcher, he collaborates with scholars in architecture and the humanities to apply participatory design methods toward community-engaged projects, which explore contemporary conceptions of socio-technical challenges within and future speculations for “the city.”