Making a Medical Maker’s Playbook: An Ethnographic Study of Safety-Critical Collective Design by Makers in Response to COVID-19

Megan Hofmann, Udaya Lakshmi, Kelly Mack, Rosa I. Arriaga, Scott E. Hudson, and Jennifer Mankoff. Making a Medical Maker’s Playbook: An Ethnographic Study of Safety-Critical Collective Design by Makers in Response to COVID-19. Proc. ACM Hum. Comput. Interact. 6(CSCW1): 101:1-101:26 (2022).

We present an ethnographic study of a maker community that conducted safety-driven medical making to deliver over 80,000 devices for use at medical facilities in response to the COVID-19 pandemic. To achieve this, the community had to balance their clinical value of safety with the maker value of broadened participation in design and production. We analyse their struggles and achievement through the artifacts they produced and the labors of key facilitators between diverse community members. Based on this analysis we provide insights into how medical maker communities, which are necessarily risk-averse and safety-oriented, can still support makers’ grassroots efforts to care for their communities. Based on these findings, we recommend that design tools enable adaptation to a wider set of domains, rather than exclusively presenting information relevant to manufacturing. Further, we call for future work on the portability of designs across different types of printers which could enable broader participation in future maker efforts at this scale.

Rapid Convergence: The Outcomes of Making PPE during a Healthcare Crisis

Kelly Mack, Megan Hofmann, Udaya Lakshmi, Jerry Cao, Nayha Auradkar, Rosa I. Arriaga, Scott E. Hudson, and Jennifer Mankoff. Rapid Convergence: The Outcomes of Making PPE during a Healthcare Crisis. Accepted in TOCHI.

The U.S. National Institute of Health (NIH) 3D Print Exchange is a public, open-source repository for 3D printable medical device designs with contributions from clinicians, expert-amateur makers, and people from industry and academia. In response to the COVID-19 pandemic, the NIH formed a collection to foster submissions of low-cost, locally-manufacturable personal protective equipment (PPE). We evaluated the 623 submissions in this collection to understand: what makers contributed, how they were made, who made them, and key characteristics of their designs. We found an immediate design convergence to manufacturing-focused remixes of a few initial designs affiliated with NIH partners and major for-profit groups. The NIH worked to review safe, effective designs but was overloaded by manufacturing-focused design adaptations. Our work contributes insights into: the outcomes of distributed, community-based medical making; the features that the community accepted as “safe” making; and how platforms can support regulated maker activities in high-risk domains.

Chronically Under-Addressed: Considerations for HCI Accessibility Practice with Chronically III People

Accessible design and technology could support the large and growing group of people with chronic illnesses. However, human computer interactions(HCI) has largely approached people with chronic illnesses through a lens of medical tracking or treatment rather than accessibility. We describe and demonstrate a framework for designing technology in ways that center the chronically ill experience. First, we identify guiding tenets: 1) treating chronically ill people not as patients but as people with access needs and expertise, 2) recognizing the way that variable ability shapes accessibility considerations, and 3) adopting a theoretical understanding of chronic illness that attends to the body. We then illustrate these tenets through autoethnographic case studies of two chronically ill authors using technology. Finally, we discuss implications for technology design, including designing for consequence-based accessibility, considering how to engage care communities, and how HCI research can engage chronically ill participants in research.

Kelly Mack*, Emma J. McDonnell*, Leah Findlater, and Heather D. Evans. In The 24th International ACM SIGACCESS Conference on Computers and Accessibility.

COVID-19 and Remote Learning for Students with Disabilities

Han Zhang, Margaret E. Morris, Paula S. Nurius, Kelly Mack, Jennifer Brown, Kevin S. Kuehn, Yasaman S. Sefidgar, Xuhai Xu, Eve A. Riskin, Anind K. Dey and Jennifer Mankoff. Impact of Online Learning in the Context of COVID-19 on Undergraduates with Disabilities and Mental Health Concerns. ACM Transactions on Accessible Computing (TACCESS).

The COVID-19 pandemic upended college education and the experiences of students due to the rapid and uneven shift to online learning. This study examined the experiences of students with disabilities with online learning, with a consideration of surrounding stressors such as financial pressures. In a mixed method approach, we compared 28 undergraduate students with disabilities(including mental health concerns) to their peers during 2020, to assess differences and similarities in their educational concerns, stress levels and COVID-19 related adversities. We found that students with disabilities entered the Spring quarter of 2020 with significantly higher concerns about classes going online, and reported more recent negative life events than other students. These differences between the two groups diminished three months later with the exception of recent negative life events. For a fuller understanding of students’ experiences, we conducted qualitative analysis of open ended interviews. We examined both positive and negative experiences with online learning among students with disabilities and mental health concerns. Online learning enabled greater access – e.g., reducing the need for travel to campus–alongside ways in which online learning impeded academic engagement–e.g., reducing interpersonal interaction. Learning systems need to continue to meet the diverse and dynamic needs of students with disabilities.

The Future of Access Technologies

Sieg 322, M/W 9-10:20

How can physical computing enable new solutions to accessibility, including both access to the world and access to computers? Similarly, how can a disability studies perspective guide us in developing empowering and relevant solutions to accessibility problems? This course explores both of those questions through a combination of discussions, reading, and building.

Access technology (AT) has the potential to increase autonomy, and improve millions of people’s ability to live independently. This potential is currently under-realized because the expertise needed to create the right AT is in short supply and the custom nature of AT makes it difficult to deliver inexpensively. Yet computers’ flexibility and exponentially increasing power have revolutionized and democratized access technologies. In addition, by studying access technology, we can gain valuable insights into the future of all user interface technology.

In this course we will focus on two primary domains for access technologies: Access to the world (first half of the class) and Access to computers (second half of class). Students will start the course by learning some basic physical computing capabilities so that they have the tools to build novel access technologies. We will focus on creating AT using sensors and actuators that can be controlled/sensed with a mobile device. The largest project in the class will be an open ended opportunity to explore access technology in more depth. 

Class will meet 9-10:20 M/W

Class Syllabus

Private Class Canvas Website

Tentative Schedule

Week 1 (9/25 ONLY): Introduction

Week 2 (10/2 ONLY): Introduction

Week 3  (10/7; 10/9): 3D Printing & Laser Cutting

Week 4 (10/14; 10/16): Physical Computing

In class: Connect simple LED circuit to a phone

Pair Project: Build a Better Button (Demo 10/30; webpage due 11/1)

Week 5 (10/21; 10/23): Finishing Arduino; Disability Studies

  • Disability Studies reading due: Pick ONE only to read. Hopefully among us we will cover a range of them. We’ll compare and contrast.
  • Open work time on Arduino projects

Week 6 (10/28; 10/30): Disability Studies; Input [Tentative]

  • Discussion of Arduino Projects
  • Starting on Input
    • Characterizing the performance of input devices (‘Design space of input devices’)
    • Digital techniques for adapting to user input capabilities (e.g. voice control, eye gaze)
    • Novel interaction techniques (e.g. mobile phone interaction, at the time)
    • Passive sensing and other real world input challenges
  • Reading 1: Slide Rule
  • Reading 2: The Design Space of Input Devices

Week 7 (11/4; 11/6): Output

Week 8 (11/13 ONLY): Applications

Week 9 (11/18; 11/20): The Web

Learn about “The Web,” how access technologies interact with the Web, and how to make accessible web pages. — WebAIM has long been a leader in providing information and tutorials on making the Web accessible. A great source where you can read about accessibility issues, making content accessible, etc. Run it on your website or web page and look at the results before class.

Reading 1: Google Video on Practical Web Accessibility — this video provides a great overview of the Web and how to make web content accessible. Highly recommended as a supplement to what we will cover in class.

Optional Reading: If you want to supplement the reading with written guidance, check out Introduction to Web Accessibility, specifically the section titled ‘Principles of Accessible Design’ (which has links to how to properly write alt text; appropriate document structure, and so on).

Reading 2: What’s the problem?

Discussion: How can we make the web accessible when individual authors don’t? Also how can we improve web authoring?

Assignment: Assess a Web Page. In class, we will also make it more accessible. Please come prepared on 11/18.

Week 10 (11/25; 11/27):  Screen Readers (AKA Bigham (plus a few others) week 🙂

Week 10 (12/2; 12/4):  Working with Cognitive Impairment

Finals Week

Final Project Presentations will take place from 8:30-10:20 on Wednesday of finals week.

Final project presentations

“Occupational Therapy is Making”

Lyme Disease’s Heterogeneous Impact

An ongoing, and very personal thread of research that our group engages in (due to my own journey with Lyme Disease, which I occasionally blog about here) is research into the impacts of Lyme Disease and opportunities for helping to support patients with Lyme Disease. From a patient perspective, Lyme disease is as tough to deal with as many other more well known conditions [1].

Lyme disease can be difficult to navigate because of the disagreements about its diagnosis and the disease process. In addition, it is woefully underfunded and understudied, given that the CDC estimates around 300,000 new cases occur per year (similar to the rate of breast cancer) [2].

Bar chart showing that Lyme disease is woefully under studied.

As an HCI researcher, I started out trying to understand the relationship that Lyme Disease patients have with digital technologies. For example, we studied the impact of conflicting information online on patients [3] and how patients self-mediate the accessibility of online content [4]. It is my hope to eventually begin exploring technologies that can improve quality of life as well.

However, one thing patients need right away is peer reviewed evidence about the impact that Lyme disease has on patients (e.g. [3]) and the value of treatment for patients (e.g. [4]). Here, as a technologist, the opportunity is to work with big data (thousands of patient reports) to unpack trends and model outcomes in new ways. That research is still in the formative stages, but in our most recent publication [4] we use straightforward subgroup analysis to demonstrate that treatment effectiveness is not adequately captured simply by looking at averages.

This chart shows that there is a large subgroup (about a third) of respondents to our survey who reported positive response to treatment, even though the average response was not positive.

There are many opportunities and much need for further data analysis here, including documenting the impact of differences such as gender on treatment (and access to treatment), developing interventions that can help patients to track symptoms, manage interaction within and between doctors, and navigate accessibility and access issues.

[1] Johnson, L., Wilcox, S., Mankoff, J., & Stricker, R. B. (2014). Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey. PeerJ2, e322.

[2] Johnson, L., Shapiro, M. & Mankoff, J. Removing the mask of average treatment effects in chronic Lyme Disease research using big data and subgroup analysis.

[3] Mankoff, J., Kuksenok, K., Kiesler, S., Rode, J. A., & Waldman, K. (2011, May). Competing online viewpoints and models of chronic illness. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (pp. 589-598). ACM.

[4] Kuksenok, K., Brooks, M., & Mankoff, J. (2013, April). Accessible online content creation by end users. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (pp. 59-68). ACM.


Xin Liu

Xin is a first-year Ph.D. student with Jennifer Mankoff and Shwetak Patel in the Paul G. Allen School of Computer Science & Engineering at the University of Washington – Seattle. Prior to joining UW, he obtained a Bachelor’s degree in computer science from the University of Massachusetts Amherst in 2018. While at UMass Amherst, he received a 21st Century Leaders Award, Rising Researcher Award, and Outstanding Undergraduate Achievements Award. He is interested in using wearable sensing, human-computer interaction and machine learning to advancing healthcare.


Volunteer AT Fabricators

Perry-Hill, J., Shi, P., Mankoff, J. & Ashbrook, D. Understanding Volunteer AT Fabricators: Opportunities and Challenges in DIY-AT for Others in e-NABLE. Accepted to CHI 2017

We present the results of a study of e-NABLE, a distributed, collaborative volunteer effort to design and fabricate upper-limb assistive technology devices for limb-different users. Informed by interviews with 14 stakeholders in e-NABLE, including volunteers and clinicians, we discuss differences and synergies among each group with respect to motivations, skills, and perceptions of risks inherent in the project. We found that both groups are motivated to be involved in e-NABLE by the ability to use their skills to help others, and that their skill sets are complementary, but that their different perceptions of risk may result in uneven outcomes or missed expectations for end users. We offer four opportunities for design and technology to enhance the stakeholders’ abilities to work together.

Screen Shot 2017-03-14 at 1.09.13 PMA variety of 3D-printed upper-limb assistive technology devices designed and produced by volunteers in the e-NABLE community. Photos were taken by the fourth author in the e-NABLE lab on RIT’s campus.

Tactile Interfaces to Appliances

Anhong Guo, Jeeeun Kim, Xiang ‘Anthony’ Chen, Tom Yeh, Scott E. Hudson, Jennifer Mankoff, & Jeffrey P. Bigham, Facade: Auto-generating Tactile Interfaces to Appliances, In Proceedings of the 35th Annual ACM Conference on Human Factors in Computing Systems (CHI’17), Denver, CO (To appear)

Common appliances have shifted toward flat interface panels, making them inaccessible to blind people. Although blind people can label appliances with Braille stickers, doing so generally requires sighted assistance to identify the original functions and apply the labels. We introduce Facade – a crowdsourced fabrication pipeline to help blind people independently make physical interfaces accessible by adding a 3D printed augmentation of tactile buttons overlaying the original panel. Facade users capture a photo of the appliance with a readily available fiducial marker (a dollar bill) for recovering size information. This image is sent to multiple crowd workers, who work in parallel to quickly label and describe elements of the interface. Facade then generates a 3D model for a layer of tactile and pressable buttons that fits over the original controls. Finally, a home 3D printer or commercial service fabricates the layer, which is then aligned and attached to the interface by the blind person. We demonstrate the viability of Facade in a study with 11 blind participants.