Haley MacLeod

Rare World: Towards Technology for Rare Diseases

Researchers have created innovative technological solutions to support people with common chronic illnesses. In this study, we investigate design opportunities for people with rare diseases who are not well studied or have smaller populations to work with, because although an individuals disease may be rare, the number of people living with a rare disease is substantial. We conducted an interview study with 19 individuals with rare diseases from around the world to understand common problems and experiences that could be supported through design. We found that communicating with friends, family, and providers about her disease were challenges for participants. Additionally, participants thought of their disease as being a large part of who they were. We discuss these findings in the context of prior work on common chronic illnesses, addressing the potential relevance of existing technological interventions for people with rare diseases.

Understanding Blind People's Experiences with Computer-Generated Captions of Social Media Images

Research advancements allow computational systems to automatically caption social media images. Often, these captions are evaluated with sighted humans using the image as a reference. Here, we explore how blind and visually impaired people experience these captions in two studies about social media images. Using a contextual inquiry approach (n=6 blind/visually impaired), we found that blind people place a lot of trust in automatically generated captions, filling in details to resolve differences between an images context and an incongruent caption. We built on this in-person study with a second, larger online experiment (n=100 blind/visually impaired) to investigate the role of phrasing in encouraging trust or skepticism in captions. We found that captions emphasizing the probability of error, rather than correctness, encouraged people to attribute incongruence to an incorrect caption, rather than missing details. Where existing research has focused on encouraging trust in intelligent systems, we conclude by challenging this assumption and consider the benefits of encouraging appropriate skepticism.

OneSpace: shared visual scenes for active freeplay

Children engage in free play for emotional, physical and social development; researchers have explored supporting free play between physically remote playmates using videoconferencing tools. We show that the configuration of the video conferencing setup affects play. Specifically, we show that a shared visual scene configuration promotes fundamentally active forms of engaged, co-operative play.

Identifying Rare Diseases from Behavioural Data: A Machine Learning Approach

Rare diseases are hard to identify and diagnose. Our goal is to use self-reported behavioural data to distinguish people with rare diseases from people with more common chronic illnesses. To this effect, we adapt a state of the art machine learning algorithm to make this classification. We find that using this method, and an appropriate set of questions, we can accurately identify people with rare diseases.

Investigating the Suitability of the Asynchronous, Remote, Community-based Method for Pregnant and New Mothers

Traditional qualitative research methods, such as, interviews and focus groups, may not be feasible for certain populations- who face time, mobility, and availability constraints. We adapted the Asynchronous, Remote, Community-based (ARC) method that used closed Facebook groups to study people with rare diseases, to study a different population - pregnant and new mothers. During the course of eight weeks, we engaged 48 participants in 19 study activities using three closed Facebook groups. We added new activities to the original ARC method, informed by past HCI research, to triangulate participant input. We carefully analyzed participation patterns and activity engagement, to assess the suitability of the ARC method for engaging pregnant and new mothers in remote, group-based, qualitative research. We provide an in-depth analysis of the ARC method, noting participation characteristics, activity preferences, and the suitability of the ARC method as an online focus group.

Defining Through Expansion: Conducting Asynchronous Remote Communities (ARC) Research with Stigmatized Groups

Researchers in HCI have typically relied on face to face (FtF) methods for recruitment and data collection in their research with people living with HIV, whereas social scientists have adopted computer-mediated approaches to address concerns about data validity and access to this stigmatized population. In this paper, we use the asynchronous remote community (ARC) research method to leverage HCI instruments in an online format. ARC successfully engaged people living with HIV in terms of participation and retention by providing a safe space to discuss their experiences. By expanding on past ARC studies, we contribute to an ongoing conversation about defining ARC and working towards increased data validity -- especially in stigmatized communities.

Lessons Learned from Conducting Group-Based Research on Facebook

Existing research methods are largely intended to be conducted co-located and synchronously with a study population, but this approach is not feasible with remote or distributed populations. We describe a group-based study we conducted asynchronously on Facebook with a remote population. This study made use of adapted versions of a number of commonly used HCI research methods. We provide a thorough description of our research process, and a discussion of the lessons learned from this approach.

Rare World: Designing for Dispersed Populations with Rare Diseases

Researchers have created innovative designs to address common chronic conditions, but little is known about how to design for or even study rare disease populations. I have completed an interview study and a study in a Facebook group to understand the needs and challenges of people with rare disease. I intend to design solutions to the challenges identified in these two studies, focusing largely on support from family and friends.