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We present SimplePIR, the fastest single-server private information retrieval scheme known to date. SimplePIR’s security holds under the learning-with-errors assumption. To answer a client’s query, the SimplePIR server performs fewer than one 32-bit multiplication and one 32-bit addition per database byte. SimplePIR achieves 10 GB/s/core server throughput, which approaches the memory bandwidth of the machine and the performance of the fastest two-server private-information-retrieval schemes (which require non-colluding servers). SimplePIR has relatively large communication costs: to make queries to a 1 GB database, the client must download a 121 MB "hint" about the database contents; thereafter, the client may make an unbounded number of queries, each requiring 242 KB of communication. We present a second single-server scheme, DoublePIR, that shrinks the hint to 16 MB at the cost of slightly higher per-query communication (345 KB) and slightly lower throughput (7.4 GB/s/core). Finally, we apply our new private-information-retrieval schemes, together with a novel data structure for approximate set membership, to the task of private auditing in Certificate Transparency. We achieve a strictly stronger notion of privacy than Google Chrome’s current approach with modest communication overheads: 16 MB of download per month, along with 150 bytes per TLS connection. 

Adolescents with chronic conditions must work with family caregivers to manage their illness experiences. To explore how technology can support collaborative documentation of these experiences, we designed and distributed a paper diary probe kit in a two-week field deployment with 12 adolescent–parent dyads (24 participants). Three insights emerged from the study that highlight how technology can support shared illness management: 1) provide scaffolds to recognize physical and emotional experiences in the context of daily activities; 2) help families reconstruct patient experiences; and 3) adapt to individual preferences for capturing, representing and sharing experiences. We discuss opportunities for HCI research that follow from these findings and conclude by reflecting on the benefits and limitations of using diary probes with adolescent patients and their parental caregivers. 

Research examining whether and how adolescent patients should gain access to their electronic health records is gaining momentum. We conducted a survey to explore diversity in adolescent privacy policies and identify common approaches in health information technology management for adolescent patients. Through descriptive analyses of survey data, we found a wide range of institutional policies regarding adolescent patient privacy, and large variations in health IT executives’ baseline knowledge of access policies. A majority of respondents agreed that formal guidelines pertaining to adolescent health record privacy would be helpful. Respondents suggested that these guidelines can be developed through the synthesis of multiple perspectives, including those of pediatricians, adolescent specialists, privacy experts, parents, patient advocates, and other professional entities. 

Patient-generated data, such as recorded Observations of Daily Living (ODL) and Patient-Reported Outcomes (PRO) data, are valued sources of information in oncology care. However, prior work largely focuses on capturing clinician-defined, patient-generated data in adult oncology care. Emerging research at the intersection of human–computer interaction and medical informatics suggests that visual narratives of patients’ observations of daily living (Visual ODLs) could better support multi-party review of patients’ everyday symptoms and quality of life, potentially improving patient–clinician communication. In this paper, we build on a prior study of Visual ODLs by describing a formative, two-phase study with 15 pediatric oncology clinicians. In Phase I, we analyzed data from ethnographic interviews in a pediatric oncology setting to capture the needs of nurses, nurse practitioners, and oncologists. In Phase II, we constructed two low-fidelity dashboard display prototypes, populated with Visual ODLs contributed by actual adolescent oncology patients, and we subsequently interviewed pediatric oncology clinicians who reviewed each dashboard design. Findings from our study contribute four key design objectives for presenting interactive Visual ODL dashboards in pediatric oncology, along with three use cases for using these dashboards for symptom tracking and communication. 

During phases of treatment and between visits to the doctor’s office, adolescent patients with complex chronic illnesses must recognize and communicate about illness-related experiences with a variety of caregivers. However, significant gaps exist in our understanding of how to design appropriate techniques for eliciting day-to-day, illness- related observations from these patients. To address this gap, we draw on qualitative research on the needs of adolescents with complex chronic illnesses to propose a new, in situ approach to eliciting participatory design input, called “Just-in-Time Design.” Our approach draws inspiration from future breaching experiments and just- in-time intervention research, to both elicit adolescents’ momentary experiences and couple these with participatory design feedback. In this position paper we discuss our work-in-progress including how we are currently applying Just-in-Time Design to design new symptom-tracking tools for adolescents with cancer and chronic blood disorders 

Teens with complex chronic illnesses have difficulty understanding and articulating symptoms such as pain and emotional distress. Yet, symptom communication plays a central role in clinical care and illness management. To understand how design can help overcome these challenges, we created a visual library of 72 sketched illustrations, informed by the Observations of Daily Living framework along with insights from 11 clinician interviews. We utilized our library with storyboarding techniques, free-form sketching, and interviews, in co-design sessions with 13 pairs of chronically-ill teens and their parents. We found that teens depicted symptoms as being interwoven with narratives of personal and social identity. Teens and parents were enthusiastic about collaboratively-generated, interactive storyboards as a tracking and communication mechanism, and suggested three ways in which they could aid in communication and coordination with informal and formal caregivers. In this paper, we detail these findings, to guide the design of tools for symptom-tracking and incorporation of patient-generated data into pediatric care. 

Adolescence is a time when patients are approaching autonomy, both developmentally and legally. Yet they are still minors and are likely to encounter contradictions between situations in which they are treated as children and ones in which they are treated as adults. Being able to access their medical information may enable adolescents to take on a participatory role in their health care. However, federal policy, state law, and community norms are not consistent regarding adolescent healthcare and privacy. For example, in some regions and under some circumstances, adolescents may have consent and privacy rights similar to those of adults, with the right to make some, or all, of their own sensitive medical decisions privately. In other cases, parental notification is the norm, or guidance is unclear or lacking. In the absence of national guidelines, medical centers encounter serious challenges when developing policies about adolescent access to medical records via patient portals. The American Academy of Pediatrics has made recommendations, but these are not binding. To explore diversity in adolescent privacy policies and identify common approaches, we are conducting a qualitative study with key informants from different types of medical organizations in different regions of the country. The main objective is to identify diversity in adolescent privacy features within the patient portal. Another objective is to enumerate the factors involved in making portal access decisions. A third objective is to identify the potential need for more formalized guidance and standards on privacy features within the patient portal