As knowledge workers, university personnel's data partnerships with government entities represent an emerging mode of collaboration for public health crisis response. However, little is known about how such collaborations unfold in non-routine, complex settings. This paper investigates a data partnership between a university research team and a state health department during the COVID-19 pandemic. Drawing on 15 interviews with university personnel, we analyzed their data practices using boundary negotiating artifacts (BNA) theory, identifying five key challenges and related artifacts. We found that the absence or breakdown of artifacts pushed university personnel toward ad hoc workarounds, while power dynamics complicated artifact creation and use. Consequently, collaboration relied more on broader sociotechnical arrangements than on artifacts themselves. These insights both enrich BNA theory's defining features of non-routine, complex collaborations and point to design opportunities for supporting knowledge workers engaged in crisis-driven data partnerships, which are often politically charged.

OBJECTIVES: To detail patient challenges, and how technology support addressed them, in a remote patient activation intervention for hemodialysis patients (n = 93) from trained patient mentors (n = 26). MATERIALS AND METHODS: Using digital divide theory-derived codes, content analysis of: technology support program delivery data, hemodialysis clinic staff interviews, and support staff reflection papers. Descriptive statistics from postintervention mentee/mentor surveys. RESULTS: All mentees and 46.2% of mentors received support. Motivational access was targeted with explanations, rapport, and support availability. Study-provided, data-capable tablets enhanced material access, but internet access barriers persisted. Skills access was addressed by training; password-related challenges initially dominated. For usage access, on-demand technology support was balanced by engagement support: proactive prementoring session calls and login monitoring. DISCUSSION: Interventionists should examine internet coverage in targeted areas, potentially using multiple carriers. A balance between password usability and security is required. Engagement support may be needed. CONCLUSION: Technology support can close patient digital divides.

Peer Reviewed

OBJECTIVE: To characterize and demonstrate how to reduce the administrative burden experienced by patients when navigating medication affordability resources in the United States. MATERIALS AND METHODS: Informed by administrative burden theory, we conducted an environmental scan of medication affordability resources for atrial fibrillation, and four common comorbidities (diabetes, heart failure, hypertension, and lipid disorder). We systematically searched for resources (eg, patient assistance programs, savings cards and nonprofit support) and extracted information about types, eligibility criteria, needed documentation, and application processes. RESULTS: We identified 66 resources across 12 categories across the five conditions. The resources' varied eligibility criteria, application processes, and requirements for providing sensitive financial documents could introduce multiple administrative costs for patients. DISCUSSION: The volume and complexity of medication affordability resources and related application processes may create substantial administrative burden for patients that could prevent their use-especially when prescribed multiple medications. CONCLUSION: Medication affordability resource informatics tools that reduce administrative burden could advance equitable medication access.

The COVID-19 pandemic caused a global disruption of daily routines. Children with behavioral disabilities were particularly impacted, losing access to critical face-to-face behavioral health services. In response, many providers and parents attempted to recover these routine services, primarily with digital technology. In April-July 2020, we conducted a mixed-methods study with parents of children with behavioral disabilities. Using a six-week survey study followed by semi-structured interviews, we identified how disrupted behavioral health routines impacted children, and how care teams recovered these services using digital technology. The recovery of children's behavioral health services was delayed, resulting in negative consequences for the children. The stoppage of services undermined care teams' coordination mechanisms, necessitating they establish digital communication channels. This digital communication supported the recovery of some services, but not most. Video conferencing was overstimulating for some children, and most recovered services required parental involvement. Our findings have substantial implications for the CSCW community regarding the design of digital technology to increase usability by (and supports for) children with disabilities, and how behavioral health practice could enable resilient behavioral health services that could withstand the impact of future disruption.

Chronic disease management requires numerous family-based activities. Although HCI has investigated family-based chronic disease management, there is no systematic basis for technology design. Routines support adherence; thus, we used routines theory to: investigate chronic disease management activities in families; the roles of family, patients, and artifacts; activity routinization; and routine interrelationships. The 2-year study included 38 families managing type 2 diabetes and/or HIV/AIDS. Data collection involved individual and family group interviews, surveys, and home tours. Families performed 14 chronic disease management activities within five interrelated cycles, and one less-connected activity. Most families included both family members and patients in activities—although this could be problematic. Activities were typically only moderately routinized and followed cyclical activity patterns joined by sequential or concurrent interdependence. A medication-taking routine ecology had coordination difficulties. Results surface design implications for a potentially powerful new class of technologies to support family-based chronic disease management routines.

OBJECTIVES: Investigate how people with chronic obstructive pulmonary disease (COPD)-an example of a progressive, potentially fatal illness-are using digital technologies (DTs) to address illness experiences, outcomes and social connectedness. MATERIALS AND METHODS: A transformative mixed methods study was conducted in Canada with people with COPD (n = 77) or with a progressive lung condition (n = 6). Stage-1 interviews (n = 7) informed the stage-2 survey. Survey responses (n = 80) facilitated the identification of participants for stage-3 interviews (n = 13). The interviews were thematically analyzed. Descriptive statistics were calculated for the survey. The integrative mixed method analysis involved mixing between and across the stages. RESULTS: Most COPD participants (87.0%) used DTs. However, few participants frequently used DTs to self-manage COPD. People used DTs to seek online information about COPD symptoms and treatments, but lacked tailored information about illness progression. Few expressed interest in using DTs for self- monitoring and tracking. The regular use of DTs for intergenerational connections may facilitate leaving a legacy and passing on traditions and memories. Use of DTs for leisure activities provided opportunities for connecting socially and for respite, reminiscing, distraction and spontaneity. DISCUSSION AND CONCLUSION: We advocate reconceptualizing consumer health technologies to prioritize quality of life for people with a progressive, potentially fatal illness. "Quality of life informatics" should focus on reducing stigma regarding illness and disability and taboo towards death, improving access to palliative care resources and encouraging experiences to support social, emotional and mental health. For DTs to support people with fatal, progressive illnesses, we must expand informatics strategies to quality of life.

OBJECTIVES: The aim of this study was to investigate how healthcare staff intermediaries support Federally Qualified Health Center (FQHC) patients' access to telehealth, how their approaches reflect cognitive load theory (CLT) and determine which approaches FQHC patients find helpful and whether their perceptions suggest cognitive load (CL) reduction. MATERIALS AND METHODS: Semistructured interviews with staff (n = 9) and patients (n = 22) at an FQHC in a Midwestern state. First-cycle coding of interview transcripts was performed inductively to identify helping processes and participants' evaluations of them. Next, these inductive codes were mapped onto deductive codes from CLT. RESULTS: Staff intermediaries used 4 approaches to support access to, and usage of, video visits and patient portals for FQHC patients: (1) shielding patients from cognitive overload; (2) drawing from long-term memory; (3) supporting the development of schemas; and (4) reducing the extraneous load of negative emotions. These approaches could contribute to CL reduction and each was viewed as helpful to at least some patients. For patients, there were beneficial impacts on learning, emotions, and perceptions about the self and technology. Intermediation also resulted in successful visits despite challenges. DISCUSSION: Staff intermediaries made telehealth work for FQHC patients, and emotional support was crucial. Without prior training, staff discovered approaches that aligned with CLT and helped patients access technologies. Future healthcare intermediary interventions may benefit from the application of CLT in their design. Staff providing brief explanations about technical problems and solutions might help patients learn about technologies informally over time. CONCLUSION: CLT can help with developing intermediary approaches for facilitating telehealth access.

Many approaches in biomedical informatics (BMI) rely on the ability to define, gather, and manipulate biomedical data to support health through a cyclical research-practice lifecycle. Researchers within this field are often fortunate to work closely with healthcare and public health systems to influence data generation and capture and have access to a vast amount of biomedical data. Many informaticists also have the expertise to engage with stakeholders, develop new methods and applications, and influence policy. However, research and policy that explicitly seeks to address the systemic drivers of health would more effectively support health. Intersectionality is a theoretical framework that can facilitate such research. It holds that individual human experiences reflect larger socio-structural level systems of privilege and oppression, and cannot be truly understood if these systems are examined in isolation. Intersectionality explicitly accounts for the interrelated nature of systems of privilege and oppression, providing a lens through which to examine and challenge inequities. In this paper, we propose intersectionality as an intervention into how we conduct BMI research. We begin by discussing intersectionality's history and core principles as they apply to BMI. We then elaborate on the potential for intersectionality to stimulate BMI research. Specifically, we posit that our efforts in BMI to improve health should address intersectionality's five key considerations: (1) systems of privilege and oppression that shape health; (2) the interrelated nature of upstream health drivers; (3) the nuances of health outcomes within groups; (4) the problematic and power-laden nature of categories that we assign to people in research and in society; and (5) research to inform and support social change.

Millions of Americans forego medical care due to a lack of non-emergency transportation, particularly minorities, older adults, and those who have disabilities or chronic conditions. Our study investigates the potential for using timebanks—community-based voluntary services that encourage exchanges of services for “time dollars” rather than money—in interventions to address healthcare transportation barriers to seed design implications for a future affordable ridesharing platform. In partnership with a timebank and a federally qualified healthcare center (FQHC), 30 participants completed activity packets and 29 of them attended online workshop sessions. Our findings suggest that promoting trust between drivers and riders requires systems that prioritize safety and reliability; yet, there were discrepancies in the ability of the timebank and FQHC to moderate trust. We also found that timebank supports reciprocity, but healthcare transportation requires additional support to ensure balanced reciprocity. We explain these findings drawing from network closure and trust literature. Finally, we contribute design implications for systems that promote trust and facilitate relational over transactional interactions, which help to promote reciprocity and reflect participants’ values.

OBJECTIVE: We investigated patient experiences with medication- and test-related cost conversations with healthcare providers to identify their preferences for future informatics tools to facilitate cost-sensitive care decisions. MATERIALS AND METHODS: We conducted 18 semistructured interviews with diverse patients (ages 24-81) in a Midwestern health system in the United States. We identified themes through 2 rounds of qualitative coding. RESULTS: Patients believed their providers could help reduce medication-related costs but did not see how providers could influence test-related costs. Patients viewed cost conversations about medications as beneficial when providers could adjust medical recommendations or provide resources. However, cost conversations did not always occur when patients felt they were needed. Consequently, patients faced a "cascade of work" to address affordability challenges. To prevent this, collaborative informatics tools could facilitate cost conversations and shared decision-making by providing information about a patient's financial constraints, enabling comparisons of medication/testing options, and addressing transportation logistics to facilitate patient follow-through. DISCUSSION: Like providers, patients want informatics tools that address patient out-of-pocket costs. They want to discuss healthcare costs to reduce the frequency of unaffordable costs and obtain proactive assistance. Informatics interventions could minimize the cascade of patient work through shared decision-making and preventative actions. Such tools might integrate information about efficacy, costs, and side effects to support decisions, present patient decision aids, facilitate coordination among healthcare units, and eventually improve patient outcomes. CONCLUSION: To prevent a burdensome cascade of work for patients, informatics tools could be designed to support cost conversations and decisions between patients and providers.

Front-line workers in global development are often responsible for data collection and record-keeping about their own work. The authenticity of such data and the role of mid-level supervisors, however, remains understudied. We report on the case of immunization in Pakistan, where, through interviews with 30 mid-level vaccination managers in Punjab district, we find that data falsification by vaccinators is common, though not necessarily rampant. Because of an intricate protocol for record-keeping, supervisors can detect data falsification, and we find they have devised an array of methods, broadly classifiable into four types: triangulation, supplementary data collection, anomaly detection, and interrogation. We also find that the strategies that supervisors use to detect falsification seem linked to their style of management, with authoritarian supervisors preferring supplementary data collection and spot checks, while supportive supervisors use triangulation. Our findings lead to recommendations for designing technologies intended to monitor and manage front-line data.

The rise of ridesharing platforms has transformed traditional transportation, making it more accessible for getting to work and accessing grocery stores and healthcare providers, which are essential to physical and mental well-being. However, such technologies are not available everywhere. Additionally, there is a scarcity of HCI work that investigates how vulnerable populations such as rural-dwelling people with HIV face and overcome transportation barriers. To extend past research, we conducted 31 surveys and 18 interviews with people living with HIV (22 surveys, 14 interviews) and their case coordinators (9 surveys, 4 interviews) in rural areas. Contrary to past research, we found that the use of alternative vehicles, extensive support networks, and nonprofit health organizations facilitated transportation. However, distance, the lack of trust and infrastructure, stigma, and other cultural underpinnings made popular forms of urban transportation unappealing. We contextualize our findings with prior research and contribute implications for future research and design.

Qualitative research, the analysis of nonquantitative and nonquantifiable data through methods such as interviews and observation, is integral to the field of biomedical and health informatics. To demonstrate the integrity and quality of their qualitative research, authors should report important elements of their work. This perspective article offers guidance about reporting components of the research, including theory, the research question, sampling, data collection methods, data analysis, results, and discussion. Addressing these points in the paper assists peer reviewers and readers in assessing the rigor of the work and its contribution to the literature. Clearer and more detailed reporting will ensure that qualitative research will continue to be published in informatics, helping researchers disseminate their understanding of people, organizations, context, and sociotechnical relationships as they relate to biomedical and health data.

OBJECTIVE: Hemodialysis patients frequently experience dialysis therapy sessions complicated by intradialytic hypotension (IDH), a major patient safety concern. We investigate user-centered design requirements for a theory-informed, peer mentoring-based, informatics intervention to activate patients toward IDH prevention. METHODS: We conducted observations (156 hours) and interviews (n = 28) with patients in 3 hemodialysis clinics, followed by 9 focus groups (including participatory design activities) with patients (n = 17). Inductive and deductive analyses resulted in themes and design principles linked to constructs from social, cognitive, and self-determination theories. RESULTS: Hemodialysis patients want an informatics intervention for IDH prevention that collapses distance between patients, peers, and family; harnesses patients' strength of character and resolve in all parts of their life; respects and supports patients' individual needs, preferences, and choices; and links "feeling better on dialysis" to becoming more involved in IDH prevention. Related design principles included designing for: depth of interpersonal connections; positivity; individual choice and initiative; and comprehension of connections and possible actions. DISCUSSION: Findings advance the design of informatics interventions by presenting design requirements for outpatient safety and addressing key design opportunities for informatics to support patient involvement; these include incorporation of behavior change theories. Results also demonstrate the meaning of design choices for hemodialysis patients in the context of their experiences; this may have applicability to other populations with serious illnesses. CONCLUSION: The resulting patient-facing informatics intervention will be evaluated in a pragmatic cluster-randomized controlled trial in 28 hemodialysis facilities in 4 US regions.

Journal of the American Medical Informatics Association, ocab033, https://doi.org/10.1093/jamia/ocab033 In the originally publication of this article, co-author Leah Hein was omitted from the authorship list. This should read: “Matthew A Willis, Leah Brand Hein, Zhaoxian Hu, Rajiv Saran, Marissa Argentina, Jennifer Bragg-Gresham, Sarah L Krein, Brenda Gillespie, Kai Zheng, Tiffany C Veinot” instead of “Matthew A Willis, Zhaoxian Hu, Rajiv Saran, Marissa Argentina, Jennifer Bragg-Gresham, Sarah L Krein, Brenda Gillespie, Kai Zheng, Tiffany C Veinot.” The AUTHOR CONTRIBUTIONS statement also lacked details. This should read: “TV supervised the project and study design, TV designed data collection instruments for the observations and individual interviews, and LH designed focus group data collection instruments. TV, LH, and MA collected data, and LH conducted first-cycle data analysis. ZH designed ideas for the application and developed the application. MAW and TV conducted the literature review, analyzed data, developed the theoretical framework, and drafted the manuscript and revisions. RS, MA, JBG, SLK, BG, and KZ provided input into design of the study, substantive review, and final approval.” instead of “TV supervised the project and study design. MAW and TV conducted literature review, drafted the manuscript and revisions, analyzed data, and developed the theoretical framework. ZH designed ideas for the application and developed the application. TV and MA collected data. RS, MA, JBG, SLK, BG, and KZ contributed input into design of the study, substantive review, and final approval.” These errors have now been corrected.

Abstract The relationship between information and control interests social scientists; however, much prior work has focused on organizations rather than families. Work on interactive information behaviors has also focused on organizations and on collaboration rather than conflict. Therefore, in families managing chronic illness, we investigated information behaviors in the context of health‐related social control and the impact of control on patient health behavior. We conducted a qualitative analysis of interviews with 38 family groups and 97 individuals over 2 years. Findings revealed conflictual information behavior, which led to competitions for control and influence between family members and patients. In response to perceived patient health behavior‐related problems, family members sought, shared, and used information for social control of patients by enforcing norms, leveraging expertise, performing surveillance, and structuring the environment. These behaviors clashed with patients' interests and perspectives drawn from their own information acquisition. Patients responded by assessing family‐presented information and using information to resist or appease norm enforcement, refute or agree with expertise, and permit or block surveillance. Over time, some patient behaviors changed; alternatively, patients blocked family access to information about themselves, or family members retreated. The results challenge presumptions of benefit and harmony that have characterized much prior information behavior research.

introduction Introduction: Performing Rurality with Computing Share on Authors: Norman Makoto Su Indiana University Bloomington Indiana University BloomingtonView Profile , Jean Hardy Michigan State University Michigan State UniversityView Profile , Morgan Vigil-Hayes Northern Arizona University Northern Arizona UniversityView Profile , Tiffany Veinot University of Michigan University of MichiganView Profile , Rob Comber KTH Royal Institute of Technology KTH Royal Institute of TechnologyView Profile Authors Info & Claims ACM Transactions on Computer-Human InteractionVolume 28Issue 3July 2021 Article No.: 16epp 1–13https://doi.org/10.1145/3461832Online:03 July 2021Publication History 0citation126DownloadsMetricsTotal Citations0Total Downloads126Last 12 Months126Last 6 weeks17 Get Citation AlertsNew Citation Alert added!This alert has been successfully added and will be sent to:You will be notified whenever a record that you have chosen has been cited.To manage your alert preferences, click on the button below.Manage my AlertsNew Citation Alert!Please log in to your account Save to BinderSave to BinderCreate a New BinderNameCancelCreateExport CitationPublisher SiteGet Access

OBJECTIVE: Initiatives to reduce neighborhood-based health disparities require access to meaningful, timely, and local information regarding health behavior and its determinants. We examined the validity of Twitter as a source of information for neighborhood-level analysis of dietary choices and attitudes. MATERIALS AND METHODS: We analyzed the "healthiness" quotient and sentiment in food-related tweets at the census tract level, and associated them with neighborhood characteristics and health outcomes. We analyzed keywords driving the differences in food healthiness between the most and least-affluent tracts, and qualitatively analyzed contents of a random sample of tweets. RESULTS: Significant, albeit weak, correlations existed between healthiness and sentiment in food-related tweets and tract-level measures of affluence, disadvantage, race, age, U.S. density, and mortality from conditions associated with obesity. Analyses of keywords driving the differences in food healthiness revealed foods high in saturated fat (eg, pizza, bacon, fries) were mentioned more frequently in less-affluent tracts. Food-related discussion referred to activities (eating, drinking, cooking), locations where food was consumed, and positive (affection, cravings, enjoyment) and negative attitudes (dislike, personal struggles, complaints). DISCUSSION: Tweet-based healthiness scores largely correlated with offline phenomena in the expected directions. Social media offer less resource-intensive data collection methods than traditional surveys do. Twitter may assist in informing local health programs that focus on drivers of food consumption and could inform interventions focused on attitudes and the food environment. CONCLUSIONS: Twitter provided weak but significant signals concerning food-related behavior and attitudes at the neighborhood level, suggesting its potential usefulness for informing local health disparity reduction efforts.

Abstract People respond to illness in a range of ways, and take different approaches to engaging with health information throughout the course of their illness. This study describes and explains the variety of approaches to health information interactions made by patients on hemodialysis. Ethnographic observations (156 hours) were conducted in three hemodialysis clinics, and semistructured interviews about health information were held with 28 patients. Demographic data were collected. Data were analyzed qualitatively. We found a spectrum of five approaches to health information: avoiders, who close themselves off from health information; receivers, who encounter information in the dialysis clinic but do not seek it out; askers, who only pose questions about health to their healthcare providers but otherwise do not seek; seekers, who actively look for health information both in and out of the clinic; and verifiers, who seek information and triangulate it among multiple sources. Trust in healthcare providers and coping sociality differed across approaches. The findings indicate that health information should be provided to patients using strategies tailored to their preferences and existing approaches to information interaction.

Hemodialysis is life-saving therapy for end-stage renal disease; yet, 20% of hemodialysis sessions are complicated by intradialytic hypotension ("IDH"). There is a need for approaches to preventing IDH that account for their implementation contexts. Using Activity Theory, we outline the design of a digital diagnostic checklist to identify patients at risk of IDH. Checklists were chosen a priori as an outcome due to prior evidence of effectiveness. Drawing on individual interviews with 20 clinicians and three focus groups with 17 patients, we describe four activity systems within hemodialysis care. We then outline a novel design process that includes co-design activities with clinicians, and four rapid-cycle iterations that progressively incorporated activity system elements into checklist design. We contribute a new type of checklist design to HCI: one that supports diagnostic thinking rather than consistent task completion. We further broaden checklist design by including a formal role for patients in checklist completion.

OBJECTIVE: There are increasing efforts to capture psychosocial information in outpatient care in order to enhance health equity. To advance clinical decision support systems (CDSS), this study investigated which psychosocial information clinicians value, who values it, and when and how clinicians use this information for clinical decision-making in outpatient type 2 diabetes care. MATERIALS AND METHODS: This mixed methods study involved physician interviews (n = 17) and a survey of physicians, nurse practitioners (NPs), and diabetes educators (n = 198). We used the grounded theory approach to analyze interview data and descriptive statistics and tests of difference by clinician type for survey data. RESULTS: Participants viewed financial strain, mental health status, and life stressors as most important. NPs and diabetes educators perceived psychosocial information to be more important, and used it significantly more often for 1 decision, than did physicians. While some clinicians always used psychosocial information, others did so when patients were not doing well. Physicians used psychosocial information to judge patient capabilities, understanding, and needs; this informed assessment of the risks and the feasibility of options and patient needs. These assessments influenced 4 key clinical decisions. DISCUSSION: Triggers for psychosocially informed CDSS should include psychosocial screening results, new or newly diagnosed patients, and changes in patient status. CDSS should support cost-sensitive medication prescribing, and psychosocially based assessment of hypoglycemia risk. Electronic health records should capture rationales for care that do not conform to guidelines for panel management. NPs and diabetes educators are key stakeholders in psychosocially informed CDSS. CONCLUSION: Findings highlight opportunities for psychosocially informed CDSS-a vital next step for improving health equity.

Health informatics studies the use of information technology to improve human health. As informaticists, we seek to reduce the gaps between current healthcare practices and our societal goals for better health and healthcare quality, safety, or cost. It is time to recognize health equity as one of these societal goals-a point underscored by this Journal of the American Medical Informatics Association Special Focus Issue, "Health Informatics and Health Equity: Improving our Reach and Impact." This Special Issue highlights health informatics research that focuses on marginalized and underserved groups, health disparities, and health equity. In particular, this Special Issue intentionally showcases high-quality research and professional experiences that encompass a broad range of subdisciplines, methods, marginalized populations, and approaches to disparities. Building on this variety of submissions and other recent developments, we highlight contents of the Special Issue and offer an assessment of the state of research at the intersection of health informatics and health equity.

Information behavior may enhance hypertension self-management in African-Americans. The goal of this substudy was to examine relationships between measures of self-reported health information behavior and neural measures of health information processing in a sample of 19 prehypertensive African-Americans (mean age=52.5, 52.6% women). We measured 1) health information seeking, sharing, and use (surveys) and 2) neural activity using functional magnetic resonance imaging (fMRI) to assess response to health information videos. We hypothesized that differential activation (comparison of analytic vs. empathic brain activity when watching a specific type of video) would indicate better function in three, distinct cognitive domains: 1) Analytic Network, 2) Default Mode Network (DMN), and 3) ventromedial prefrontal cortex (vmPFC). Scores on the information sharing measure (but not seeking or use) were positively associated with differential activation in the vmPFC (rs=.53, p=.02) and the DMN (rs=.43, p=.06). Our findings correspond with previous work indicating that activation of the DMN and vmPFC is associated with sharing information to persuade others, and with behavior change. Although health information is commonly conveyed as detached and analytic in nature, our findings suggest that neural processing of socially and emotionally salient health information is more closely associated with health information sharing.

The materiality of information environments, and its role in information behavior, has received little attention. We present an ethnographic study involving 156 hours of observation and 28 patient interviews in outpatient hemodialysis facilities. Using an extended “Semiotic Framework for Information Systems Research,” the findings show that objects, spaces, and bodies were integral to 6 sociomaterial layers of facility information environments: the physical, empiric, syntactic, semantic, pragmatic, and social world. Objects of importance in the information environments included dialysis machines, instruments, records, paper documents, televisions, furniture, thermostats, lighting, and personal possessions. Spatial features, including compartmentalization, displays, distance, proximity, and spatially‐grounded routines, also constituted information environments. The information environments were also shaped by patient immobility, bodily discomforts, and orientation to bodily states. Each sociomaterial layer introduced enablers and constraints to information access, flow, and acceptance; these combined to construct patients primarily as passive recipients of information rather than active seekers and producers of information. A sociomaterial perspective and related focus on objects, spaces, and bodies offers a lens for professional information practice. We contribute information environment design guidance to facilitate such practice and stress that the value of certain sources and types of information can be materially encoded in an environment.

HCI researchers are increasingly conducting research in rural communities. This paper interrogates how rurality has been treated in previous HCI research conducted in developed and high-income countries. We draw from research outside of HCI to suggest how we can effectively engage with rurality in research. We present results of a scoping review of HCI literature that asks: 1) How do HCI researchers define rurality?; 2) How do the unique characteristics of rural communities enter into study findings?; 3) What methods are used in rural research?; and 4) Where has rural research been conducted? More than twice as many rural HCI articles have been conducted in low-income and/or developing countries than in high-income and/or developed countries. HCI researchers rarely define rurality, and when they do, they primarily define it using descriptive rather than sociocultural or symbolic definitions. Rural research findings have primarily addressed infrastructure and distance/geographic isolation as unique rural characteristics, while qualitative, observational, and cross-sectional methods dominate this research. There are further opportunities for HCI research to more productively advance understanding of what rurality is, and how it matters for sociotechnical systems.

Emotion- and stressed-related eating (ESRE) is associated with weight management difficulties and is more likely to affect women than men. Additionally, health information technology (HIT) for weight management tends to be less effective for women than it is for men, and less effective for people who engage in ESRE. Therefore, this study explores how HIT can support overweight/obese women curb ESRE behavior. Study participants, all adult overweight/obese women (BMI ' 25), logged dietary intake for 10 days with the Lose It! smartphone app as an elicitation exercise. Cross sectional, semi-structured interviews (N = 22) were then conducted to explore technology support needs concerning ESRE behavior. Findings revealed participants had the following needs: holistic health goal development, building motivation to achieve goals, and assistance with handling stress. Resulting HIT guidelines include supporting holistic health goals, developing and sustaining motivation, exchange of emotional support, understanding of behavior, and change in ESRE mindset.

Health informatics interventions are designed to help people avoid, recover from, or cope with disease and disability, or to improve the quality and safety of healthcare. Unfortunately, they pose a risk of producing intervention-generated inequalities (IGI) by disproportionately benefiting more advantaged people. In this perspective paper, we discuss characteristics of health-related interventions known to produce IGI, explain why health informatics interventions are particularly vulnerable to this phenomenon, and describe safeguards that can be implemented to improve health equity. We provide examples in which health informatics interventions produced inequality because they were more accessible to, heavily used by, adhered to, or effective for those from socioeconomically advantaged groups. We provide a brief outline of precautions that intervention developers and implementers can take to guard against creating or worsening inequality through health informatics. We conclude by discussing evaluation approaches that will ensure that IGIs are recognized and studied.

Objective: To describe a new, comprehensive process model of clinical information interaction in primary care (Clinical Information Interaction Model, or CIIM) based on a systematic synthesis of published research. Materials and Methods: We used the "best fit" framework synthesis approach. Searches were performed in PubMed, Embase, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Library and Information Science Abstracts, Library, Information Science and Technology Abstracts, and Engineering Village. Two authors reviewed articles according to inclusion and exclusion criteria. Data abstraction and content analysis of 443 published papers were used to create a model in which every element was supported by empirical research. Results: The CIIM documents how primary care clinicians interact with information as they make point-of-care clinical decisions. The model highlights 3 major process components: (1) context, (2) activity (usual and contingent), and (3) influence. Usual activities include information processing, source-user interaction, information evaluation, selection of information, information use, clinical reasoning, and clinical decisions. Clinician characteristics, patient behaviors, and other professionals influence the process. Discussion: The CIIM depicts the complete process of information interaction, enabling a grasp of relationships previously difficult to discern. The CIIM suggests potentially helpful functionality for clinical decision support systems (CDSSs) to support primary care, including a greater focus on information processing and use. The CIIM also documents the role of influence in clinical information interaction; influencers may affect the success of CDSS implementations. Conclusion: The CIIM offers a new framework for achieving CDSS workflow integration and new directions for CDSS design that can support the work of diverse primary care clinicians.

Nearly half of African-American women have hypertension, which increases their risk for cardiovascular disease and stroke. A plethora of consumer health information products and services exist to inform people with hypertension and to promote self-management among them. Promotion of information sharing by African-American women represents a promising, culturally-applicable strategy for consumer health information services focused on hypertension self-management. Yet, how African-American women share hypertension information with others is unclear. The purpose of this qualitative, descriptive study was to examine practices of information sharing in African-American women with hypertension. Thirteen women (mean age = 73, SD = 9.87) participated in one of two focus groups held at an urban community health center. Thematic analysis revealed that the women shared information about how they self-managed their blood pressure 1) with female family members and friends, 2) about ways in which they adapted self-management strategies to work for them, 3) mostly in group settings, and 4) because they wanted to prevent others from suffering and reinforce their own knowledge about hypertension self-management. New findings emerged regarding assessing "readiness" for information. Study findings will be used to inform the design of an information sharing intervention to support self-management of hypertension in African-American women.

Ride-hailing services have received attention as part of the growing work around the sharing economy, but the focus of these studies has largely been on drivers. In this paper, we examine how ride-hailing is transforming the transportation practices of one group of passengers - people with visual impairments in metropolitan India. Through a qualitative study consisting of interviews and observations, we examined the use and impact of these services on our target population, who otherwise contend with chaotic, unreliable, and largely inaccessible modes of transportation. We found that ride-hailing services positively affects participants' notions of independence, and we tease out how independence for our participants is not just about 'doing things alone, without help' but is also situated, social and relative. Furthermore, we show how accessibility, in the case of ride-hailing in India, is a socio-technical and collaborative achievement, involving interactions between the passenger, the driver, and the technology.

Advances in Information and Communication Technologies (ICTs) offer new opportunities for addressing transportation needs; however, past research suggests that opportunities are not equally shared by millions of low-income Americans. We draw from four empirical studies and two case studies to contribute descriptions of the 11 everyday transportation models currently used by residents of low-income and underserved communities to enhance their access to health-enhancing resources. These models fell into personal, private, public, and interpersonal categories. We contribute insights regarding the following barriers and facilitators associated with these models: (1) affordability; (2) individual capabilities; (3) interpersonal trust, care and/or reciprocity; (4) trust in technology; (5) service availability/eligibility; (6) spatial and temporal matches; (7) match between transportation mode and physical needs; (8) service reliability and quality; and (9) infrastructure access. To address these barriers and build on these facilitators, we contribute six supportive policy and design principles. Operationalizing these principles, we propose four new ICT-enhanced models: (1) smart jitneys; (2) generalized, favor-based models; (3) expanded resource pooling; and (4) transportation clubs. The focus of these models on socio-technical integration with current capabilities and resources holds promise for enhancing access to jobs, food, and health care for residents of low-income communities.

Increasing numbers of American parents identify as lesbian, gay, bisexual, or transgender (LGBT). Shifting social movements are beginning to achieve greater recognition for LGBT parents and more rights for their families; however, LGBT parents still experience stigma and judgment in a variety of social contexts. We interviewed 28 LGBT parents to investigate how they navigate their online environments in light of these societal shifts. We find that 1) LGBT parents use social media sites to detect disapproval and identify allies within their social networks; 2) LGBT parents become what we call incidental advocates, when everyday social media posts are perceived as advocacy work even when not intended as such; and 3) for LGBT parents, privacy is a complex and collective responsibility, shared with children, partners, and families. We consider the complexities of LGBT parents' online disclosures in the context of shifting social movements and discuss the importance of supporting individual and collective privacy boundaries in these contexts.

OBJECTIVE: We compare 5 health informatics research projects that applied community-based participatory research (CBPR) approaches with the goal of extending existing CBPR principles to address issues specific to health informatics research. MATERIALS AND METHODS: We conducted a cross-case analysis of 5 diverse case studies with 1 common element: integration of CBPR approaches into health informatics research. After reviewing publications and other case-related materials, all coauthors engaged in collaborative discussions focused on CBPR. Researchers mapped each case to an existing CBPR framework, examined each case individually for success factors and barriers, and identified common patterns across cases. RESULTS: Benefits of applying CBPR approaches to health informatics research across the cases included the following: developing more relevant research with wider impact, greater engagement with diverse populations, improved internal validity, more rapid translation of research into action, and the development of people. Challenges of applying CBPR to health informatics research included requirements to develop strong, sustainable academic-community partnerships and mismatches related to cultural and temporal factors. Several technology-related challenges, including needs to define ownership of technology outputs and to build technical capacity with community partners, also emerged from our analysis. Finally, we created several principles that extended an existing CBPR framework to specifically address health informatics research requirements. CONCLUSIONS: Our cross-case analysis yielded valuable insights regarding CBPR implementation in health informatics research and identified valuable lessons useful for future CBPR-based research. The benefits of applying CBPR approaches can be significant, particularly in engaging populations that are typically underserved by health care and in designing patient-facing technology.

This study examined the use of time-based objects by patients and their families to manage chronic illnesses at home. Calendar systems and medication containers, the main types of time-based objects studied, were used as part of two family-based collaborative work practices: 1) prompting health management activities, and 2) safeguarding these activities. Additionally, these artifacts were part of two social interaction patterns that managed emotional intimacy: 1) expressing support, and 2) hiding and disguising illness. Accordingly, home-based illness management may be more collaborative than previously recognized. Moreover, through their interactive incorporation into family life, time-based objects are laden with psychosocial significance. Breakdowns in temporal support were also evident, and were accompanied by: missed medication events; rationing of medications; medication errors; and difficulties with preparation for medical appointments. We propose novel artifact designs to better support patients and their families in managing the temporal aspects of chronic illness together.

Designing patient-centered consumer health informatics (CHI) applications requires understanding and creating alignment with patients' and their family members' health-related activities, referred to here as 'patient work'. A patient work approach to CHI draws on medical social science and human factors engineering models and simultaneously attends to patients, their family members, activities, and context. A patient work approach extends existing approaches to CHI design that are responsive to patients' biomedical realities and personal skills and behaviors. It focuses on the embeddedness of patients' health management in larger processes and contexts and prioritizes patients' perspectives on illness management. Future research is required to advance (1) theories of patient work, (2) methods for assessing patient work, and (3) techniques for translating knowledge of patient work into CHI application design. Advancing a patient work approach within CHI is integral to developing and deploying consumer-facing technologies that are integrated with patients' everyday lives.

In their response to our original paper, “Transforming Consumer Health Informatics through a Patient Work Framework: Connecting Patients to Context,” Marceglia and colleagues propose an architecture that integrates the patient work framework into a higher-order framework linking consumer health informatics (CHI) applications and professional health information systems (designated by the authors as the health-Information Technology (IT) ecosystem).1 The purpose of our letter is threefold. First, we detail how an expanded understanding of the patient work framework already conceptually encompasses the larger contexts in which CHI use must occur. Second, we assert that meaningful application of the patient work perspective yields implications not only for integration with professional health information systems but also with the larger information infrastructures within the community. Third, we propose modifications to Marceglia and colleagues’ architecture to explicitly represent a “shared space” between CHI applications and professional health information systems; this space contains collaborative work and collaborative informatics. Our original patient work framework was intended to serve as a foundation for CHI design by enabling the understanding of people, their daily contexts, and their daily activities. As such, we limited the scope of our discussion to the immediate home and community environments of the patient. We agree, however, with Marceglia and colleagues that a deeper understanding of the macrostructures encompassing patient work is required. This understanding is necessary not only for specifying constraints on the design outcome, but also for generating creative design alternatives. Larger macrostructures are included in the human factor engineering and social science theories that form the core of the patient work framework; consequently, they are already conceptually embedded.2–4 These macrostructures include not only the larger technological infrastructure (including, but not limited to, the health-IT ecosystem specified by Marceglia and colleagues), but also the economic, regulatory, and policy landscapes. For example, awareness of insurance policies may lead designers to plan for a future in which CHI applications are covered entities. However, designers of applications for people with low socioeconomic status and less generous health insurance plans may need to pursue low-cost alternatives. Designing for populations that use older hardware or operating systems will similarly require technological challenges to be understood and addressed, such as the backward compatibility of mHealth applications and Short Message Service (SMS)-based alternatives. In the phase of conceptual design, the second step in our user-centered design process, integrating knowledge of these broader contexts is particularly salient. Although we agree that the patient work framework can produce valuable insights into connecting CHI applications with professional health information systems, we assert that its technical implications are, in fact, much broader. As an investigational framework, patient work also illuminates numerous areas of connection to a more broadly conceptualized health-IT ecosystem that includes the information infrastructures of patients’ homes and communities. To illustrate, we offer a few examples of design alternatives that build upon a recognition of this larger health-IT ecosystem. In the category “physical environment,” neighborhood walkability scores and safety information, along with patient health and social network data, may inform the development of strategies for integrating therapeutic physical activity into patients’ daily lives. Moreover, establishing a connection between patients and relevant environmental data may facilitate health management planning (e.g., providing a pollen count warning for patients with asthma triggered by seasonal allergies). Smart reminders may also help patients and their caregivers anticipate medication refills when medication usage is seasonally higher. Similarly, the analysis of data from the category “articulation work” may reveal transportation challenges, indicating that linking bus routes, schedules, and location data with patient reminders may assist with appointment-keeping. Long-term solutions may involve linking patients with data regarding insurers that provide transportation assistance or social media–facilitated informal transportation networks. This integrated approach moves beyond the vision of seamless exchange of patient health information to the seamless exchange of all information that, from the perspective of social determinants of health, shapes patient outcomes.5 Thus, technical architectures to support patient work may be infinitely more complex than those that facilitate data exchange between CHI applications and professional health information systems, despite the importance of efforts in that direction. The architecture proposed by Marceglia and colleagues creates a clear distinction between CHI applications and professional health information systems. However, we assert that patient and health care provider work are often jointly constructed and performed (e.g., patient-clinician communication/secure messaging, medication reconciliation, family-centered pediatric rounds, and cancer treatment planning). The clinical encounter is often grounded in patient narratives that relate the experience of self-management in the home. Similarly, patients’ self-management practices in the home are often influenced by discussions with providers in clinical settings. Patients’ health management practices in the home may also involve the presence of health professionals such as physical therapists, social workers, and home care nurses. Consequently, we contend that the proposed architecture should be expanded to contain a middle space for collaborative professional-patient work2 and informatics solutions (see Figure 1). Collaborative informatics solutions include tethered personal health records, which enable the sharing of both clinic-generated data with patients and patient-generated data with health care providers. We believe that this amendment to Marceglia and colleagues’ approach may yield promising directions for system design, focusing on the interconnectedness of and interactions between both sets of work systems. Informatics tools based on such an understanding would promote interoperability not only at the technological and semantic levels but also at the level of work processes. Three forms of work activity performed by professionals, patients, and families, and corresponding technologies (adapted from Holden et al. 20132 and Marceglia et al. 20141). Achieving the full vision of informatics-supported patient engagement will require understanding and designing solutions that integrate with the numerous macrostructures within which patient work is performed. It will require creating CHI applications that communicate not only with professional health information systems but also with the larger information infrastructures of the community. Finally, it will further necessitate creating informatics solutions that recognize the collaborative nature of work that ultimately maintains and improves health.

Information use intrigues information behavior researchers, though many have struggled with how to conceptualize and study this phenomenon. Some work suggests that information may have social uses, hinting that information use is more complicated than previous frameworks suggest. Therefore, we use a micro‐sociological, symbolic interactionist approach to examine the use of one type of information—biomedical information—in the everyday life interactions of chronic illness patients and their families. Based on a grounded theory analysis of 60 semi‐structured interviews (30 individual patient interviews and 30 family group interviews) and observations within the family group interviews, we identify 4 categories of information use: (a) knowing my body; (b) mapping the social terrain; (c) asserting autonomy; and (d) puffing myself up. Extending previous research, the findings demonstrate use of biomedical information in interactions that construct a valued self for the patient: a person who holds authority, and who is unique and cared for. In so doing, we contribute novel insights regarding the use of information to manage social emotions such as shame, and to construct embodied knowledge that is mobilized in action to address disease‐related challenges. We thus offer an expanded conceptualization of information use that provides new directions for research and practice.

Health research shows that knowing about health risks may not translate into behavior change. However, such research typically operationalizes health information acquisition with knowledge tests. Information scientists who investigate socially embedded information behaviors could help improve understanding of potential associations between information behavior-as opposed to knowledge-and health behavior formation, thus providing new opportunities to investigate the effects of health information. We examine the associations between information behavior and HIV testing intentions among young men who have sex with men (YMSM), a group with high rates of unrecognized HIV infection. We used the theory of planned behavior (TPB) to predict intentions to seek HIV testing in an online sample of 163 YMSM. Multiple regression and recursive path analysis were used to test two models: (a) the basic TPB model and (b) an adapted model that added the direct effects of three information behaviors (information exposure, use of information to make HIV-testing decisions, prior experience obtaining an HIV test) plus self-rated HIV knowledge. As hypothesized, our adapted model improved predictions, explaining more than twice as much variance as the original TPB model. The results suggest that information behaviors may be more important predictors of health behavior intentions than previously acknowledged.

OBJECTIVE: We investigated the user requirements of African-American youth (aged 14-24 years) to inform the design of a culturally appropriate, network-based informatics intervention for the prevention of HIV and other sexually transmitted infections (STI). MATERIALS AND METHODS: We conducted 10 focus groups with 75 African-American youth from a city with high HIV/STI prevalence. Data analyses involved coding using qualitative content analysis procedures and memo writing. RESULTS: Unexpectedly, the majority of participants' design recommendations concerned trust. Youth expressed distrust towards people and groups, which was amplified within the context of information technology-mediated interactions about HIV/STI. Participants expressed distrust in the reliability of condoms and the accuracy of HIV tests. They questioned the benevolence of many institutions, and some rejected authoritative HIV/STI information. Therefore, reputational information, including rumor, influenced HIV/STI-related decision making. Participants' design requirements also focused on trust-related concerns. Accordingly, we developed a novel trust-centered design framework to guide intervention design. DISCUSSION: Current approaches to online trust for health informatics do not consider group-level trusting patterns. Yet, trust was the central intervention-relevant issue among African-American youth, suggesting an important focus for culturally informed design. Our design framework incorporates: intervention objectives (eg, network embeddedness, participation); functional specifications (eg, decision support, collective action, credible question and answer services); and interaction design (eg, member control, offline network linkages, optional anonymity). CONCLUSIONS: Trust is a critical focus for HIV/STI informatics interventions for young African Americans. Our design framework offers practical, culturally relevant, and systematic guidance to designers to reach this underserved group better.

Abstract The authors review five paradigms from the discipline of community sociology (functionalism, evolution, conflict, interactionism, and exchange) to assess their potential utility for understanding everyday life information behavior and technology use. Their analysis considers the ways in which each paradigm defines the concepts of community, information, and technology. It also explores the insights offered by each paradigm regarding relationships between community and both information and technology. Accordingly, the authors highlight the ways in which existing information behavior and informatics scholarship draws from similar conceptual roots. Key insights drawn from this research, as well as remaining gaps and research questions, are examined. Additionally, they consider the limitations of each approach. The authors conclude by arguing for the value of a vigorous research program regarding information behavior and technology use in communities, particularly that which takes the community as the central unit of analysis. They consider key questions that could drive such a research program, as well as potentially fruitful conceptual and methodological approaches for this endeavor.

Abstract HIV/AIDS information is an important resource for people affected by the disease, particularly information that they obtain from other people. Although existing studies revealthatpeople with HIV/AIDS (PHAs) rely extensively on personal relationships for HIV/AIDS information, they explain little abouthowthis happens as a social process. To investigate how PHAs and their friends/family members acquire and share network‐mediated HIV/AIDS information, semistructured, in‐depth interviews were conducted in three rural regions of Canada. Interviews were carried out with 114 PHAs, their friends/family members, and health care and service providers. A network solicitation and chain‐referral recruitment procedure was used to delineate HIV/AIDS information networks for participants. Interview data were analyzed qualitatively and compared to Haythornthwaite's ( 1996 ) concepts of network‐mediated information processes and Talja and Hansen's ( 2006 ) collaborative information behavior framework. Findings revealed that participants obtained HIV/AIDS information from their networks through five interactive processes: joint seeking, tag‐team seeking, exposure, opportunity, and legitimation. The results of this study advance information behavior theory by pointing to the interactive character of information behavior and introducing new concepts to describe everyday life collaborative information behavior. This research also demonstrates the extensive interplay between health information exchange and the sharing of emotional support. The insights emanating from this study suggest that health information practice might benefit from a focus on program strategies such as building information network capacity, developing collaborative information retrieval systems and relationship‐building, in addition to the more traditional library‐related concerns of reference encounters, collections, and institutional Web sites.