Information-Seeking, Finding Identity: Exploring the Role of Online Health Information in Illness Experience

Workshop Schedule

We have some wonderful speakers ready to share their experiences on the workshop themes.

Keynote by Professor Ann Blandford

Ann Blandford is Professor of Human–Computer Interaction (HCI) at University College London. In the past, she has been Director of UCL Interaction Centre (UCLIC) and of the UCL Institute of Digital Health. She has led many research projects on the design of systems to help lay people and clinicians manage individuals’ health. She works closely with patients, clinicians, and healthcare engineers, in both the UK and internationally. She has published widely on the design and use of interactive health technologies, and on how technology can be designed to better support people’s needs and values, recognising that people are living complex lives and often managing complex health conditions. This has included a text on “Interacting with Information” and papers on sense making, meaning making and how people find a “new normal” through interacting with information, individually and collaboratively.

Prof. Blandford will talk about, Perspectives on health information journeys

The ways in which people make sense of and construct personal meaning from online health information resources has evolved substantially over recent years, exploiting new technology affordances. In this talk, I will reflect on some of the key developments: from a focus on individual information retrieval, through information journeys that support sense making, to people constructing personal meaning by engaging together in online health communities, and how this shapes and is shaped by their self-identity. I will consider what makes health information journeys more or less positive experiences and highlight some challenges for this research community.

Full Schedule

9 am- Welcome & Introductions

9.15 am- Keynote Talk

Professor Ann Blandford

10 am- Panel 1

1. Approaches to Analyzing Information-Seeking Journeys and Identity

Speakers: Tiffany Veinot & Jenny Bronstein

2. Illness and Identity Online in the Global South

Speakers: Sharifa Sultana & Azra Ismail

10.30 am Breakout Activities

11 am- Break

11.30 am- Panel 2

1.Stigma and Sensitive Topics

Speakers: Fernando Maestre & Michael Ann Devito

2.Language

Speakers: Seunghyun Kim & Millicent Agangiba

12 pm Breakout Activities

12.30- Consolidation of Next Steps

1pm- Workshop End

Speaker Announcements

Sharifa Sultana

Sharifa is an HCI researcher and Facebook Fellow. She uses both quantitative and qualitative (ethnographic) techniques to study marginalized rural populations and designs computational tools and systems to address the challenges for rural low-education populations while accessing information technologies and social media.

Azra Ismail

Azra Ismail is a PhD Candidate in Human-Centered Computing at Georgia Tech, where she examines the intersections between data/AI, health, labor, marginality, and design. Her PhD thesis investigates the design of data/AI-driven systems in frontline health, particularly for precarious women health workers providing maternal and child care in the Global South. She draws on feminist and postcolonial perspectives to examine current data/AI efforts, and undertakes participatory design of systems that aim to support more caring futures for workers and communities on the margins.

Fernando Maestre

Fernando Maestre (he/him/his) is an Ecuadorian researcher and educator. He has taught and conducted research in universities in his home country. After moving to the United States in 2013, he obtained a Master’s degree in Informatics from the University of Iowa and a PhD degree in Human-computer Interaction Design from the Luddy School of Informatics, Computing, and Engineering at Indiana University. Fernando conducts Human-Computer Interaction (HCI) research with stigmatized and marginalized groups. He applies novel methods to conduct research remotely and in-person in the contexts of stigma management, health, and transportation access. In 2021, Fernando is a recipient of the President’s Postdoctoral Award to continue with his academic training in the Department of Computer Science and Engineering at the University of Minnesota. He is currently a member of the GroupLens Lab.

Michael Ann DeVito

Dr. Michael Ann DeVito is a postdoctoral Computing Innovation Fellow in the Department of Information Science at the University of Colorado Boulder. She is a qualitative researcher who studies how users and communities understand and adapt to the challenges of everyday, casual human/AI collaboration. This includes work on folk understandings of algorithms, as well as work as a member-researcher on how queer and trans communities adapt to social platforms. Dr. DeVito earned a PhD in Media, Technology, and Society from Northwestern University. She frequently publishes in and organizes for ACM conferences such as CSCW and CHI.

Milicent Akotam

Millicent is a Licensed Professional Engineer with the Institution of Engineering Technology and a Senior Lecturer at the University of Mines and Technology, Tarkwa. She is also the Executive Director of Inclusive Tech Group, a Not-for-Profit Organisation advancing Digital Accessibility for Persons with Disabilities. She holds PhD in Information Systems from the University of Cape Town and a Master of Science degree in Computers Science from Tver State Technical University in the Russian Federation. Her current research interest is in Usability and Accessibility of Online Content, Policy Implementations relating to Development of Online Systems, Web and Mobile Technologies and ICT4D. She is a Senior Member of the Institute of Electrical and Electronics Engineers (IEEE), a Member of the Association of Computing Machinery (ACM) and Association of Information Systems (AIS), International Association of Engineers (IAENG) and Internet Society, Ghana (ISOC-GH), Ladies in Mining and Allied Professions (LiMaP) and Women in Science with Borders (WISWB).

Seunghyun Kim

Seunghyun Kim graduated from Cornell University with a Bachelor of Arts, Master of Engineering, and Master of Science in Computer Science. He is currently a Computer Science PhD student at Georgia Tech with a concentration in Social Computing. He focuses on the human-centeredness of the machine learning algorithms for online risk detection in social media platforms, examining human involvement in the development as well as the interpretability and explainability of machine learning models.

Tiffany Veinot

Tiffany Veinot, MLS, PhD is Associate Dean for Faculty at the University of Michigan (UM)’s School of Information. She is also a Full Professor at the Schools of Information and Public Health at UM. Her research focuses on “community health informatics,” or the use of information systems and services to improve the health of marginalized populations and reduce health disparities.

She is also an Associate Editor for the International Journal of Medical Informatics and on the Editorial Boards of the Journal of the American Medical Informatics Association (JAMIA), and Journal of the Association of Information Science and Technology. She has also taken leadership in building scholarly communities for health equity-oriented research. For example, guest edited a special double issue of JAMIA on “Health Informatics and Health Equity: Improving our reach and Impact.”

Jenny Bronstein : Chair of the Department of Information Science at Bar-Ilan University

Workshop Themes

Approaches to Analyzing Information-Seeking Journeys and Identity — We want to explore the different methods used and how they influence how people make sense of their information journeys, their illnesses and pathways to care, as well as how individual or group identities can affect these information journeys
Illness and Identity Online in the Global South — Discourse around searching for health information has often clustered around behaviors in Western countries. The privilege given to the West in these conversations echoes patterns from history, in which minority experiences of distress were marginalized [10]. We hope to have a vibrant discussion around the nuances to sense-making in non-Western contexts, asking the broader question of how interfaces for health information can be designed with structural, cultural, and local contexts in mind, to better support users from around the world.

Stigma & Sensitive Topics — How do the implications of stigma and the impact of sensitivities affect how people search for and use information? We welcome contributions that explore whether online information helps or hinders access to information and healthcare services in the cases of stigmatised or sensitive topics, such as sexual and reproductive health.

Language — Language is a powerful tool in communicating health information. Depending on one’s culture, class, race, nationality, or religion, the tone, settings, and actors are understood/interpreted differently. We are interested in surfacing the cross-cultural concerns around online information-seeking (among non-native speakers)

Algorithmic Biases — What are the impacts of algorithmic biases and do these affect how people manage and understand their online information-seeking and ultimately the decisions they make about their healthcare?

The COVID-19 Pandemic — How has the pandemic changed how people search for and validate information? Have the implications of misinformation that was spread during the pandemic affected people’s trust in online information? We would also like to understand how the pandemic has changed people’s perceptions of identity and norms with regards to their healthcare.

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