Defining Menstrual Literacy With the Aim of Evaluating Mobile Menstrual Tracking Applications.

For the estimated 75 million people in the United States who menstruate, understanding menstrual health as a critical "vital sign" is an important aspect of managing personal health. Unsurprisingly, in the past decade, menstrual tracking applications have become increasingly popular, with more than 300 applications available for download and an estimated 200 million downloads worldwide. This study had two purposes. The first was to formulate a definition for menstrual literacy-a baseline of knowledge and skills for understanding anatomical and biological facts of menstruation, caring for the menstruating body, and completing menstrual care tasks-by building on prior work about health literacy and by conducting content analysis of eight Web sites containing information about menstruation. The second was to evaluate a maximum variation sample of 17 menstrual tracking applications; here, features and functions related to the concepts about menstrual literacy identified in a content analysis were compared. These applications had insufficient support for facilitating menstrual literacy, especially for teen and perimenopausal users. The article discusses these disconnects and subsequent design opportunities for menstrual tracking applications to facilitate more robust support of menstrual literacy and overall health of people who menstruate.

"It's Not Just Technology, It's People": Constructing a Conceptual Model of Shared Health Informatics for Tracking in Chronic Illness Management.

BACKGROUND: For many people, tracking health indicators is central to managing a chronic illness. However, previous informatics research has largely viewed tracking as a solitary process that lacks the characteristics essential to tracking in support of chronic illness management. OBJECTIVE: To inform development of effective technologies that aid tracking of health indicators to support chronic illness management, this study aimed to construct a health informatics model that accurately describes the work and social context of that tracking work. METHODS: As part of a larger project, we conducted semistructured interviews with 40 adults concerning their chronic illness management practices, including tracking and communication. We also assembled transcripts of 30 publicly available videos of 24 adults discussing tracking processes for managing their own chronic illness. We used qualitative methods to analyze interviews and video transcripts through the lens of ongoing personal and health informatics research. RESULTS: We have described the people and work involved in tracking in support of chronic illness management and contributed a Conceptual Model of Shared Health Informatics (CoMSHI). Specifically, we identified the need for a health informatics model that (1) incorporates the ongoing nature of tracking work and (2) represents the social dimension of tracking for illness management. Our model depicts communication, information, collection, integration, reflection, and action work in the social context of the person with chronic illness, informal carers, health care providers, and community members. CONCLUSIONS: The resulting CoMSHI yields a more detailed and nuanced viewpoint of tracking in support of chronic illness management and can inform technology design to improve tracking tools to support people in more confident and capable chronic illness management.

"I think people are powerful": The Sociality of Individuals Managing Depression.

Millions of Americans struggle with depression, a condition characterized by feelings of sadness and motivation loss. To understand how individuals managing depression conceptualize their self-management activities, we conducted visual elicitations and semi-structured interviews with 30 participants managing depression in a large city in the U.S. Midwest. Many depression support tools are focused on the individual user and do not often incorporate social features. However, our analysis showed the key importance of sociality for self-management of depression. We describe how individuals connect with specific others to achieve expected support and how these interactions are mediated through locations and communication channels. We discuss factors influencing participants' sociality including relationship roles and expectations, mood state and communication channels, location and privacy, and culture and society. We broaden our understanding of sociality in CSCW through discussing diffuse sociality (being proximate to others but not interacting directly) as an important activity to support depression self-management.

Searching for Survivor-Specific Services at NCI-Designated Comprehensive Cancer Centers: A Qualitative Assessment.

Background: Cancer survivorship presents unique medical, psychosocial, and logistical challenges for survivors, their caregivers, and clinicians. NCI-designated Comprehensive Cancer Centers (CCCs) serve a unique role in the delivery of cancer care because they not only provide care but also serve as a model for community oncologists and clinics through the development and dissemination of standards of care. Survivors, their caregivers, and clinicians look to CCCs to provide information about how to navigate the transition from active to posttreatment care. However, there is wide variability in the types of resources CCCs make available on their websites. The goal of our assessment was to understand the types of posttreatment survivor-specific resources CCCs are providing on their website. Methods: We analyzed the websites of the 47 CCCs to evaluate survivor-specific resources around the 4 components of survivorship care described by the Institute of Medicine guidelines for survivorship care plans: surveillance, prevention, intervention, and coordination. Results: Of the 47 CCCs, 74.5% (n=35) had discoverable survivor-specific services on their websites. Despite our inclusive approach to coding, few websites contained extensive information targeted at survivors, their caregivers, or clinicians. Only the coordination and intervention elements were discussed by at least half of the CCCs. From the vantage point of cancer survivors, their lay caregivers, loved ones, or clinicians, there is limited information about survivor-specific services on the websites of the 47 CCCs. This dearth of information translates into substantial work for these groups to find the resources they may need. Conclusions: The CCCs have an opportunity to serve as information hubs and to lessen the amount of work associated with survivorship. As models of cancer care delivery, the CCCs can also set the standard for community oncologists and clinics for delivery of care that improves the quality of life for survivors.

Supporting Collaborative Health Tracking in the Hospital: Patients' Perspectives.

The hospital setting creates a high-stakes environment where patients' lives depend on accurate tracking of health data. Despite recent work emphasizing the importance of patients' engagement in their own health care, less is known about how patients track their health and care in the hospital. Through interviews and design probes, we investigated hospitalized patients' tracking activity and analyzed our results using the stage-based personal informatics model. We used this model to understand how to support the tracking needs of hospitalized patients at each stage. In this paper, we discuss hospitalized patients' needs for collaboratively tracking their health with their care team. We suggest future extensions of the stage-based model to accommodate collaborative tracking situations, such as hospitals, where data is collected, analyzed, and acted on by multiple people. Our findings uncover new directions for HCI research and highlight ways to support patients in tracking their care and improving patient safety.

Integrating the patient portal into the health management work ecosystem: user acceptance of a novel prototype.

People with a chronic illness must manage a myriad of tasks to support their health. Online patient portals can provide vital information and support in managing health tasks through notification and reminder features. However, little is known about the efficacy of these features in managing health tasks via the portal. To elicit feedback about reminder and notification features in patient portals, we employed a patient-centered approach to design new features for managing health tasks within an existing portal tool. We tested three iteratively designed prototypes with 19 patients and caregivers. Our findings provide insights into users' attitudes, behavior, and motivations in portal use. Design implications based on these insights include: (1) building on positive aspects of clinician relationships to enhance engagement with the portal; (2) using face-to-face visits to promote clinician collaboration in portal use; and (3) allowing customization of portal modules to support tasks based on user roles.

Designing Asynchronous Communication Tools for Optimization of Patient-Clinician Coordination.

Asynchronous communication outside the clinical setting has both enriched and complicated patient-clinician interactions. Many patients can now interact with a patient portal 24 hours a day, asking questions of their clinicians via secure message, checking lab results, ordering medication refills, or making appointments. However, the mode of communication (asynchronous) and the nature of the interaction (lacking tone or body language) strip valuable information from each side of patient-clinician asynchronous communication. Using interviews with 34 individuals who actively manage a chronic illness of their own, or for a child or partner, we elicited narratives about patients' experiences and expectations for using asynchronous communication to address medical issues with their clinicians. Based on these perspectives, we present opportunities for designing asynchronous communication tools to better facilitate understanding of and coordination around care activities between patients and clinicians.

Understanding patients' health and technology attitudes for tailoring self-management interventions.

Healthcare providers are moving towards tailoring self-management interventions to include the communication technologies patients use in daily life. Accurate understanding of patients' attitudes towards both technology and involvement in managing chronic conditions will be critical for informing effective self-management strategies. The tailoring of these interventions, however, could be undermined by providers' implicit biases based on patient age, race, and education level that have been shown to negatively affect care. To inform the design and tailoring of self-management interventions, we elicited attitudes toward technology use and participation in care of 40 participants in a maximum variation sample. The analysis revealed three participant clusters-"Proactive Techies," "Indie Self-Managers," and "Remind Me! Non-Techies"-that represent varying attitudes toward health behaviors and technologies that were independent of race, education level, and age. Our approach provides insight into how people prioritize important values related to health participation and technology.

Shared Calendars for Home Health Management.

What is the role of shared calendars for home health management? Utilizing a maximum variation sampling method, we interviewed 20 adult individuals with diabetes and 20 mothers of children with asthma to understand calendar use in the context of chronic disease home health management. In comparing the experiences of these two groups, we explore participants' use of tools for organizing tasks and appointments, their strategies for capturing health and non-health events in the family calendar system, the ecology of artifacts that intersect with their scheduling tools, and the failures they experienced while managing their calendar systems. Through this work, we offer a context-specific perspective of schedule management strategies for individuals and families who must integrate their handling of chronic illnesses with everyday living.

Understanding Design Tradeoffs for Health Technologies: A Mixed-Methods Approach.

We introduce a mixed-methods approach for determining how people weigh tradeoffs in values related to health and technologies for health self-management. Our approach combines interviews with Q-methodology, a method from psychology uniquely suited to quantifying opinions. We derive the framework for structured data collection and analysis for the Q-methodology from theories of self-management of chronic illness and technology adoption. To illustrate the power of this new approach, we used it in a field study of nine older adults with type 2 diabetes, and nine mothers of children with asthma. Our mixed-methods approach provides three key advantages for health design science in HCI: (1) it provides a structured health sciences theoretical framework to guide data collection and analysis; (2) it enhances the coding of unstructured data with statistical patterns of polarizing and consensus views; and (3) it empowers participants to actively weigh competing values that are most personally significant to them.

Systematic inquiry for design of health care information systems: an example of elicitation of the patient stakeholder perspective.

The electronic health record (EHR) has evolved as a tool primarily dictated by the needs of health care clinicians and organizations, providing important functions supporting day to day work in health care. However, the EHR and supporting information systems contain the potential to incorporate patient workflows and tasks as well. Integrating patient needs into existing EHR and health management systems will require understanding of patients as direct stakeholders, necessitating observation and exploration of in situ EHR use by patients to envision new opportunities for future systems. In this paper, we describe the application of a theoretical framework (Vicente, 1999) to organize qualitative data during a multi-stage research study into patient engagement with EHRs. By using this method of systematic inquiry, we have more effectively elicited patient stakeholder needs and goals to inform the design of future health care information systems.

Engineering for reliability in at-home chronic disease management.

Individuals with chronic conditions face challenges with maintaining lifelong adherence to self-management activities. Although reminders can help support the cognitive demands of managing daily and future health tasks, we understand little of how they fit into people's daily lives. Utilizing a maximum variation sampling method, we interviewed and compared the experiences of 20 older adults with diabetes and 19 mothers of children with asthma to understand reminder use for at-home chronic disease management. Based on our participants' experiences, we contend that many self-management failures should be viewed as systems failures, rather than individual failures and non-compliance. Furthermore, we identify key principles from reliability engineering that both explain current behavior and suggest strategies to improve patient reminder systems.