Social networks can respond to outside shocks by 'turtling up' (clus-ering around strong ... more Social networks can respond to outside shocks by 'turtling up' (clus-ering around strong ties) instead of adapting by activating more weak ties to obtain new information, however this has not been shown in smaller, personal information and support networks. Therefore, the goal of this study was to explore whether these networks respond to shocks similarly. To do this, we evaluated the impacts of health shocks, unforeseen and disruptive health events, on the structure (e.g. network size/transitivity and tie strength/type) and function, i.e. ability to provide resources like information and social support, of information and support networks for families managing chronic illness. Using clustered sampling methods, families managing HIV/AIDS or type 2 diabetes were recruited. Longitudinal interview, survey and network data were collected from 28 families over a period of 2.5 years, with up to five contacts per family. We report descriptive statistics and random effects models us...
BACKGROUND Mobile devices are increasingly used to collect location-based information from indivi... more BACKGROUND Mobile devices are increasingly used to collect location-based information from individuals about their physical activities, dietary intake, environmental exposures, and mental well-being. Such research, which typically uses wearable devices or smartphones to track location, benefits from the growing availability of fine-grained data regarding human mobility. However, little is known about the comparative geospatial accuracy of such devices. OBJECTIVE In this study, we compared the data quality of location information collected from two mobile devices which determine location in different ways — a GPS watch and a smartphone with Google’s Location History feature enabled. METHODS Twenty-one chronically ill participants carried both devices, which generated digital traces of locations, for 28 days. A smartphone-based brief ecological momentary assessment (EMA) survey asked participants to manually report their location at four random times throughout each day. Participants ...
Proceedings of the Association for Information Science and Technology, 2021
Members of the Lesbian, Gay, Bisexual, Transgender, Queer/Questioning, plus (LGBTQ+) community ma... more Members of the Lesbian, Gay, Bisexual, Transgender, Queer/Questioning, plus (LGBTQ+) community may face discrimination in healthcare, which can subsequently impact information and care‐seeking patterns. A tendency to avoid or delay health care is particularly concerning for LGBTQ+ people who face both physical and mental health disparities. This paper presents a literature review of literature on healthcare discrimination, LGBTQ+ care‐seeking, and associated information behaviors in order to generate a preliminary model of LGBTQ+ decision‐making around care and well‐being, called the Model of the Pathways to LGBTQ+ Well‐Being. This model can be used to investigate links between information behavior and relevant health behaviors and outcomes in a marginalized population.
Journal of the American Medical Informatics Association, 2021
Objective Hemodialysis patients frequently experience dialysis therapy sessions complicated by in... more 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 “feel...
Journal of the Association for Information Science and Technology, 2020
The relationship between information and control interests social scientists; however, much prior... more 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&#...
Journal of the Association for Information Science and Technology, 2019
People respond to illness in a range of ways, and take different approaches to engaging with heal... more 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 healt...
ACM Transactions on Computer-Human Interaction, 2018
Advances in Information and Communication Technologies (ICTs) offer new opportunities for address... more 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 addres...
Journal of the American Medical Informatics Association, 2019
ObjectiveThere are increasing efforts to capture psychosocial information in outpatient care in o... more ObjectiveThere 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 MethodsThis 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.ResultsParticipants 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 u...
Proceedings of the ACM on Human-Computer Interaction, 2018
Ride-hailing services have received attention as part of the growing work around the sharing econ... more 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 th...
Journal of the Association for Information Science and Technology, 2017
Nearly half of African‐American women have hypertension, which increases their risk for cardiovas... more 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 2 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 i) with female family members and friends, ii) about ways in which t...
Journal of the American Medical Informatics Association, 2017
ObjectiveTo describe a new, comprehensive process model of clinical information interaction in pr... more ObjectiveTo 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 MethodsWe 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.ResultsThe 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) infl...
Proceedings of the American Society for Information Science and Technology, 2012
Longstanding approaches to health and health care are failing us: costs have skyrocketed while ca... more Longstanding approaches to health and health care are failing us: costs have skyrocketed while care quality remains highly uneven; the majority of health care in North America takes place in homes and communities rather than hospitals and doctor's offices; and institutionalized health care often does little to support people psychosocially or prevent people from becoming ill in the first place. Enthusiasm for the potential of consumer participation in health and health care has found advocates among health systems and insurers keen to reduce costs and patient organizations agitating for improved recognition and care. Alongside these trends, we find an increased focus on consumer health in the disciplines of information science and informatics. Health information science studies examine information behavior, information policy, terminology and information retrieval systems. Health informaticians focus on the design and evaluation of consumer‐facing technologies such as personal h...
Proceedings of the American Society for Information Science and Technology, 2013
Based on interviews with people who had diabetes, high blood pressure, and kidney disease in Flin... more Based on interviews with people who had diabetes, high blood pressure, and kidney disease in Flint, Michigan, we found people actively doing information work to manage their health in the face of poverty, potentially violent conditions, high stress, and a distrust of institutionalized medicine. More specifically, we observed people translating information into the context of their everyday lives. We present various translations of health information in the form of local strategies for chronic illness management. Study findings highlight initial implications to support health information services on a community level.
Social networks can respond to outside shocks by 'turtling up' (clus-ering around strong ... more Social networks can respond to outside shocks by 'turtling up' (clus-ering around strong ties) instead of adapting by activating more weak ties to obtain new information, however this has not been shown in smaller, personal information and support networks. Therefore, the goal of this study was to explore whether these networks respond to shocks similarly. To do this, we evaluated the impacts of health shocks, unforeseen and disruptive health events, on the structure (e.g. network size/transitivity and tie strength/type) and function, i.e. ability to provide resources like information and social support, of information and support networks for families managing chronic illness. Using clustered sampling methods, families managing HIV/AIDS or type 2 diabetes were recruited. Longitudinal interview, survey and network data were collected from 28 families over a period of 2.5 years, with up to five contacts per family. We report descriptive statistics and random effects models us...
BACKGROUND Mobile devices are increasingly used to collect location-based information from indivi... more BACKGROUND Mobile devices are increasingly used to collect location-based information from individuals about their physical activities, dietary intake, environmental exposures, and mental well-being. Such research, which typically uses wearable devices or smartphones to track location, benefits from the growing availability of fine-grained data regarding human mobility. However, little is known about the comparative geospatial accuracy of such devices. OBJECTIVE In this study, we compared the data quality of location information collected from two mobile devices which determine location in different ways — a GPS watch and a smartphone with Google’s Location History feature enabled. METHODS Twenty-one chronically ill participants carried both devices, which generated digital traces of locations, for 28 days. A smartphone-based brief ecological momentary assessment (EMA) survey asked participants to manually report their location at four random times throughout each day. Participants ...
Proceedings of the Association for Information Science and Technology, 2021
Members of the Lesbian, Gay, Bisexual, Transgender, Queer/Questioning, plus (LGBTQ+) community ma... more Members of the Lesbian, Gay, Bisexual, Transgender, Queer/Questioning, plus (LGBTQ+) community may face discrimination in healthcare, which can subsequently impact information and care‐seeking patterns. A tendency to avoid or delay health care is particularly concerning for LGBTQ+ people who face both physical and mental health disparities. This paper presents a literature review of literature on healthcare discrimination, LGBTQ+ care‐seeking, and associated information behaviors in order to generate a preliminary model of LGBTQ+ decision‐making around care and well‐being, called the Model of the Pathways to LGBTQ+ Well‐Being. This model can be used to investigate links between information behavior and relevant health behaviors and outcomes in a marginalized population.
Journal of the American Medical Informatics Association, 2021
Objective Hemodialysis patients frequently experience dialysis therapy sessions complicated by in... more 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 “feel...
Journal of the Association for Information Science and Technology, 2020
The relationship between information and control interests social scientists; however, much prior... more 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&#...
Journal of the Association for Information Science and Technology, 2019
People respond to illness in a range of ways, and take different approaches to engaging with heal... more 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 healt...
ACM Transactions on Computer-Human Interaction, 2018
Advances in Information and Communication Technologies (ICTs) offer new opportunities for address... more 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 addres...
Journal of the American Medical Informatics Association, 2019
ObjectiveThere are increasing efforts to capture psychosocial information in outpatient care in o... more ObjectiveThere 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 MethodsThis 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.ResultsParticipants 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 u...
Proceedings of the ACM on Human-Computer Interaction, 2018
Ride-hailing services have received attention as part of the growing work around the sharing econ... more 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 th...
Journal of the Association for Information Science and Technology, 2017
Nearly half of African‐American women have hypertension, which increases their risk for cardiovas... more 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 2 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 i) with female family members and friends, ii) about ways in which t...
Journal of the American Medical Informatics Association, 2017
ObjectiveTo describe a new, comprehensive process model of clinical information interaction in pr... more ObjectiveTo 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 MethodsWe 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.ResultsThe 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) infl...
Proceedings of the American Society for Information Science and Technology, 2012
Longstanding approaches to health and health care are failing us: costs have skyrocketed while ca... more Longstanding approaches to health and health care are failing us: costs have skyrocketed while care quality remains highly uneven; the majority of health care in North America takes place in homes and communities rather than hospitals and doctor's offices; and institutionalized health care often does little to support people psychosocially or prevent people from becoming ill in the first place. Enthusiasm for the potential of consumer participation in health and health care has found advocates among health systems and insurers keen to reduce costs and patient organizations agitating for improved recognition and care. Alongside these trends, we find an increased focus on consumer health in the disciplines of information science and informatics. Health information science studies examine information behavior, information policy, terminology and information retrieval systems. Health informaticians focus on the design and evaluation of consumer‐facing technologies such as personal h...
Proceedings of the American Society for Information Science and Technology, 2013
Based on interviews with people who had diabetes, high blood pressure, and kidney disease in Flin... more Based on interviews with people who had diabetes, high blood pressure, and kidney disease in Flint, Michigan, we found people actively doing information work to manage their health in the face of poverty, potentially violent conditions, high stress, and a distrust of institutionalized medicine. More specifically, we observed people translating information into the context of their everyday lives. We present various translations of health information in the form of local strategies for chronic illness management. Study findings highlight initial implications to support health information services on a community level.
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Papers by Tiffany Veinot