Kathleen H. Pine

Managing Uncertainty: Using Social Media for Risk Assessment during a Public Health Crisis

Recently, diseases like H1N1 influenza, Ebola, and Zika virus have created severe crises, requiring public resources and personal behavior adaptation. Crisis Informatics literature examines interconnections of people, organizations, and IT during crisis events. However, how people use technology to cope with disease crises (outbreaks, epidemics, and pandemics) remains understudied. We investigate how individuals used social media in response to the outbreak of Zika, focusing on travel-related decisions. We found that extreme uncertainty and ambiguity characterized the Zika virus crisis. To cope, people turned to social media for information gathering and social learning geared towards personal risk assessment and modifying decisions when dealing with partial and conflicting information about Zika. In particular, individuals sought local information and used socially informed logical reasoning to deduce the risk at a specific locale. We conclude with implications for designing information systems to support individual risk assessment and decision-making when faced with uncertainty and ambiguity during public health crises.

Data-work in Healthcare: The New Work Ecologies of Healthcare Infrastructures

The workshop focuses on the new work ecologies emerging from implementation and use of information infrastructures in healthcare (IIH). As IIH “grows” through organizational and regulatory mechanisms, CSCW researchers grapple with the shifting nature of healthcare data. CSCW has long been concerned with coordination, cooperation, and communication among interdisciplinary occupations in healthcare. Yet, while medical record keeping is still a primary function of IIH, second order data usages are increasingly large foci of IIH design and use. Facilitating development of health data practice and infrastructure is an area ripe for CSCW research. Critical topics include but are not limited to: re-use of clinical data for second order usages; design of artifacts and infrastructures; politics of creating and using data; algorithmic authority of IIH and effects on the exercise of expertise and discretion of healthcare professions; new forms of healthcare data work, including new occupations; data-driven accountability and management in healthcare”

The work of reuse: birth certificate data and healthcare accountability measurements

Data reuse – long a key focus of information studies and CSCW research on eScience – is increasingly a major issue in organizations attempting to leverage data gathered using information systems for accountability functions such as performance measurements. Carrying out organizational analytics and performance measurements for accountability typically rests on the ability to successfully reuse existing, procurable data. We present results from an ethnographic study of the practices of recording birth certificate data and related attempts to assess and improve birth certificate data in response to a new reuse of birth certificate data for measurements introduced to hold hospitals accountable for the quality of the care they are delivering. Drawing on literature on data reuse and information infrastructure, we describe the situated work that must take place in order for birth certificate data to be reused for accountability purposes, and the organizational capacity building that must take place to facilitate the reuse of birth certificate data for measurement oriented to organizational improvement and accountability.

Conspiracy Talk on Social Media: Collective Sensemaking during a Public Health Crisis

Conspiracy theories have gained much academic and media attention recently, due to their large impact on public events. Crisis informatics researchers have examined conspiracy theories as a type of rumor. However, little is known about how conspiracy theories are produced and developed on social media. We present a qualitative study of conspiracy theorizing on Reddit during a public health crisis--the Zika virus outbreak. Using a mixed-methods approach including content analysis and discourse analysis, we identified types of conspiracy theories that appeared on Reddit in response to the Zika crisis, the conditions under which Zika conspiracy theories emerge, and the particular discursive strategies through which Zika conspiracy theories developed in online forums. Our analysis shows that conspiracy talk emerged as people attempted to make sense of a public health crisis, reflecting their emergent information needs and their pervasive distrust in formal sources of Zika information. Practical implications for social computing researchers, health practitioners, and policymakers are discussed.

When Medical Expertise Meets Record Expertise: The Practices of Patient Accessible Medical Records in China

Recent consumer, private sector, and governmental health informatics initiatives outline patient accessible medical records (PAMR) as key for engaging patients and supporting patient-clinician communication. However, many challenges have been encountered in designing usable digital systems for patients to access and use their medical records. Barriers to such systems include social, cultural, and policy constraints in addition to usability problems. In particular, questions of expertise, responsibility, and ownership surrounding medical records are often hotly contested between medical professionals and healthcare organizations. In broaching the design challenge of PAMR, much can be learned from examining existing practices for patient carried and accessible records in contexts where these practices are well established. We examine practices surrounding PAMR in a setting where medical records have long been managed by patients: the Chinese healthcare system. Through close examination of managing medical records and sharing medical health information, we find that these personal record practices in China enable a two-way medical records sharing practice between patients and their providers, which fundamentally reconfigures the patient role in healthcare process, facilitates development of ‘record expertise’ on the part of patients, and joint responsibility for health management. We use these findings to illuminate the potential benefits of PAMR, and to offer design considerations to optimize future systems design and deployment efforts in other contexts.

eScience Insights to Inform Infrastructure for Accountability of Healthcare

Healthcare organizations and providers are being held accountable for the care they give and for their processes of improving care safety and quality to an unprecedented degree. In countries around the world, there is a pressing need to develop infrastructure for accountability of healthcare to support performance measurement and reporting activities. Yet, little research exists on the design, development, management, or governance of infrastructure for accountability in healthcare, nor on practices of data sharing and reuse that are central to healthcare performance measurement. This paper draws on literature on data sharing and cyberinfrastructure for eScience to identify key concepts from research on supporting collaborative scienctific practice to inform research on practices and infrastructure for healthcare accountability.