Postdoctoral
Dementia Data Reciprocity Project (DDRP)
The Dementia Data Reciprocity Project (DDRP) has three aims to: (1) better understand existing personal health data collection and management practices in the home by dementia caregivers (DC); (2) explore opportunities and use cases for digital devices that automate collection and reduce management-related burdens experienced by DC as part of providing care for people with dementia (PWD); and (3) develop creative solutions that incentivise donation of real-world personal health data that supports dementia research and service delivery while addressing privacy concerns of PWD, DC, and other relevant stakeholder groups. DDRP will achieve its aims using a combination of: (1) fieldwork in homes of DC and care settings for PWD to scope existing data management practices and opportunities for technological support; (2) multi-stakeholder consultations with dementia researchers, dementia care providers, device manufacturers, and public and non-profit service delivery organisations to better understand information needs and uses within the sector; and (3) design methods with DC and PWD to develop creative solutions that support data brokerage, donation, and the balancing of privacy with access. This project has received funding from the European Union’s Horizon 2020 Research and Innovation Programme under the Marie Skłodowska-Curie grant agreement No. 101034252.
Doctoral
Personal financial records receive limited attention from researchers working in the areas of Personal Information Management, Personal Archiving, and Human-Computer Interaction. Competing definitions and conceptual models of Personal Information do not adequately account for knowledge-production during interactions with personal financial records. This research addresses these gaps by exploring the collections of personal financial data and records of 23 young adults between the ages of 18 to 25 in Montréal and Toronto, Canada. Using guided tours in the homes of participants, research data was collected in the form of audio recordings and photographic examples of financial data, information, knowledge, and wisdom from the context of personal finance. Using Reflexive Thematic Analysis, research data was analyzed deductively using the Wisdom Hierarchy and inductively from a social constructivist perspective. Findings show, young adults interact with personal financial data as the content of self-authored personal financial documents such as spreadsheets and spending logs, directed-to financial records such as receipts and statements, and financial service provider websites and apps. Young adults generated personal financial information through the curation of personal financial data in support of financial sense-making and narrative construction. Young adults generated personal financial knowledge through direct practical experience managing personal financial records and identified other humans as sources of financial knowledge that could be shared through financial socialization. Young adults used personal financial wisdom to manage their personal finances intuitively, control collection volume, and reduce their reliance on financial records to track changes in their financial situation. Some young adults relied on financial service provider information systems to preserve and provide long-term access to large portions of their collections of personal financial records. Emerging adulthood was a critical period for the development of financial records management skills and processes. Learning to create, manage, and use personal financial records is embedded in the social practice of coming of age. Young adults used their collections of personal financial records to reflect on their level of financial responsibility and shape future financial action as they worked towards greater levels of financial independence. Results of this research point to the need for a unified conceptual model of personal information management that incorporates both the knowledge-production and knowledge-transfer perspectives from Information Studies and accounts for both the curation and consumption of personal data as routine human-information interactions with personal records.This project was funded by the Social Science and Humanities Research Council of Canada (SSHRC).
Supporting Coordination and Communication During Hospice Care
Staying connected is a primary concern of hospice and palliative care patients and their families, but managing and coordinating interaction to best meet the varying needs and capabilities of patients is challenging. This project explores this space, with the long-term goal of addressing both patient and family needs and designing information technologies that enhance telepresence and communication between families and friends at the end of life. In this project, I was responsible for participant recruitment, data collection, and qualitative analysis of the data set.
Digital Paper-Based Communication Systems
This project explores the use of digital pens and paper as a platform for blending the aesthics of handwritten letters with the convenience of e-mail. In this project, I was responsible for data collection and qualitative analysis of the data set.
Masters
This is a study of the ways in which individual and community biosocial identities are produced and negotiated by members of PatientsLikeMe.com's Mood Disorder Community. In particular, I explore how the cultivation of presence and persona on a social networking site mediates the formation of identity, community, and patienthood. Over the course of five months, I engaged in participant-observations on the site and collected forum threads, blog posts, and policy documents. I argue that practices of reflexivity are built into the website's interface - particularly within profiles integrated with personal electronic health records (PEHRs). Members participate on the site to obtain informal social support and information in the form of personal experience. Members restrict their participation to protect their privacy and resist commodification of personal health information. User generated content on the site is intricately linked to practices of remembering and hope.