I am a cultural and medical anthropologist with ethnographic research experience in Japan and the U.S. I work on both academic and applied research and am currently collaborating on two major academic projects: one on community pharmacy in North Dakota, and another on help-seeking behaviors for serious mental illness in Austria and Japan. I am a former co-chair the Society for Applied Anthropology's Medical Anthropologists and Social Scientists in Health (MASSH) Topical Interest Group.
Hikikomori (‘social withdrawal’) appeared in Japan at the end of the twentieth century, inciting ... more Hikikomori (‘social withdrawal’) appeared in Japan at the end of the twentieth century, inciting public panic about a generation of Japanese youth who shun social contact and fail to engage in the age-appropriate activities of young adulthood. Widely cited as a ‘condition’ rather than a psychiatric symptom or disorder, hikikomori has functioned variously as a diagnosis of individuals, families, and society at large. Taking the polysemous (and controversial) nature of hikikomori as a starting point, we draw on fourteen months of ethnographic research to explore how families negotiate a diagnosis of hikikomori in everyday life. Our focus on families opens up fruitful questions about the moral economies of life under diagnosis, not simply for the diagnosed individual, but also for those who assume responsibility for that individual’s health and wellbeing.
Background Management of care transitions from primary care into and out of oncology is critical ... more Background Management of care transitions from primary care into and out of oncology is critical for optimal care of cancer patients and cancer survivors. There is limited understanding of existing primary care-oncology relationships within the context of the changing health care environment. Methods Through a comparative case study of 14 innovative primary care practices throughout the United States (U.S.), we examined relationships between primary care and oncology settings to identify attributes contributing to strengthened relationships in diverse settings. Field researchers observed practices for 10–12 days, recording fieldnotes and conducting interviews. We created a reduced dataset of all text related to primary care-oncology relationships, and collaboratively identified patterns to characterize these relationships through an inductive “immersion/crystallization” analysis process. Results Nine of the 14 practices discussed having either formal or informal primary care-oncolog...
80 Background: Improvements in the management of care transitions between primary care and oncolo... more 80 Background: Improvements in the management of care transitions between primary care and oncology are critical for achieving optimal care quality and outcomes for cancer patients and survivors. We examine relationships between innovative PC practices and oncologists to inform and strengthen PC-oncology interfaces in diverse healthcare settings. Methods: Comparative case studies of 14 innovative PC practices throughout the United States examined strategies for providing cancer survivorship care. Field researchers observed each practice for 10-12 days, recording fieldnotes and conducting key informant and formal, semi-structured interviews with clinicians and staff. We extracted all data related to PC-oncology relationships and then collaboratively identified patterns to characterize these relationships through an inductive “immersion/crystallization” analysis process. Results: Nine of the 14 practices discussed either formal or informal PC-oncology relationships. Nearly all practic...
Psychotic spectrum disorders are serious illnesses with symptoms that significantly impact functi... more Psychotic spectrum disorders are serious illnesses with symptoms that significantly impact functioning and quality of life. An accumulating body of literature has demonstrated that specialized treatments that are offered early after symptom onset are disproportionately more effective in managing symptoms and improving outcomes than when these same treatments are provided later in the course of illness. Specialized, multicomponent treatment packages are of particular importance, which are comprised of services offered as soon as possible after the onset of psychosis with the goal of addressing multiple care needs within a single care setting. As specialized programs continue to develop worldwide, it is crucial to consider how to increase access to such specialized services. In the current review, we utilize an ecological model of understanding barriers to care, with emphasis on understanding how individuals with first-episode psychosis interact with and are influenced by a variety of...
There are currently 15.5 million cancer survivors in USA who are increasingly relying on primary ... more There are currently 15.5 million cancer survivors in USA who are increasingly relying on primary care providers for their care. Patient-Centered Medical Homes (PCMHs) have the potential to meet the unique needs of cancer survivors; but, few studies have examined PCMH attributes as potential resources for delivering survivorship care. This study assesses the current care coordination infrastructure in advanced PCMHs, known to be innovative, and explores their capacity to provide cancer survivorship care. We conducted comparative case studies of a purposive sample (n = 9) of PCMHs to examine current care coordination infrastructure and capacity through a mixed- methods analysis. Data included qualitative interviews, quantitative surveys, and fieldnotes collected during 10- to 12-day onsite observations at each practice. Case studies included practices in five states with diverse business models and settings. Eight of the nine practices had National Committee for Quality Assurance Leve...
For individuals who are food insecure, food pantries can be a vital resource to improve access to... more For individuals who are food insecure, food pantries can be a vital resource to improve access to adequate food. Access to adequate food may be conceptualized within five dimensions: availability (item variety), accessibility (e.g., hours of operation), accommodation (e.g., cultural sensitivity), affordability (costs, monetary or otherwise), and acceptability (e.g., as related to quality). This study examined the five dimensions of access in a convenience sample of 50 food pantries in the Bronx, NY. The design was cross-sectional. Qualitative data included researcher observations and field notes from unstructured interviews with pantry workers. Quantitative data included frequencies for aspects of food access, organized by the five access dimensions. Inductive analysis of quantitative and qualitative data revealed three main inter-related findings: (1) Pantries were not reliably open: only 50% of pantries were open during hours listed in an online directory (several had had prolonge...
This article presents an account of how Japanese parents in a family support group for mental ill... more This article presents an account of how Japanese parents in a family support group for mental illness constructed understandings of care for adult children with serious mental illness, primarily schizophrenia. I build from Janis H. Jenkins's research on the "extraordinary condition" of schizophrenia to discuss "extraordinary care," which parents practiced as a way to refute cultural and clinical beliefs about pathogenic families and degenerative diseases. Parents' accounts of extraordinary care revealed a reliance on biomedical knowledge to treat the symptoms of mental illness coupled with an ongoing determination to improve children's lives beyond what psychiatry could offer. Extraordinary care thus points to the therapeutic limits of biomedical psychiatry while also reinforcing the significance of social relations as families work toward recovery.
The degree and quality of resilience in patients with depression have never been investigated in ... more The degree and quality of resilience in patients with depression have never been investigated in the context of remission status, spirituality/religiosity, and family members' resilience levels, which was addressed in this study. This cross-sectional study recruited Japanese outpatients with depressive disorder according to ICD-10 and cohabitant family members who were free from psychiatric diagnoses. Resilience was assessed using the 25-item Resilience Scale (RS). Other assessments included the Montgomery-Asberg Depression Rating Scale (MADRS); the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT) and Kasen et al.'s (2012) scale for spirituality/religiosity; and the Rosenberg Self-Esteem Scale (RSES). One hundred outpatients with depression (mean±SD age, 50.8±14.5years; 44 men; MADRS total score 9.8±9.0) and 36 healthy family members (mean±SD age, 56.5±15.0years; 18 men) were included. Symptom severity, attendance at religious/spiritual ser...
Hikikomori, often glossed as "social withdrawal," emerged as a sociomedical condition a... more Hikikomori, often glossed as "social withdrawal," emerged as a sociomedical condition among Japanese youth at the end of the twentieth century, and it continues to fascinate and concern the public. Explanatory frameworks for hikikomori abound, with different stakeholders attributing it to individual psychopathology, poor parenting, and/or a lack of social support structures. This article takes an interpretive approach to hikikomori by exploring parents' narrative constructions of hikikomori children in support group meetings and in-depth interviews. I argue that some parents were able to find hope in hikikomori by 'emplotting' their children's experiences into a larger narrative about onset, withdrawal, and recovery, which helped them remain invested in the present by maintaining a sense of possibility about the future. Contrary to literature that examines hikikomori as an epidemic of isolated individuals, I demonstrate how parents play a key role in hikiko...
There are currently 15.5 million cancer survivors in USA who are increasingly relying on primary ... more There are currently 15.5 million cancer survivors in USA who are increasingly relying on primary care providers for their care. Patient-Centered Medical Homes (PCMHs) have the potential to meet the unique needs of cancer survivors; but, few studies have examined PCMH attributes as potential resources for delivering survivorship care. This study assesses the current care coordination infrastructure in advanced PCMHs, known to be innovative, and explores their capacity to provide cancer survivorship care. We conducted comparative case studies of a purposive sample (n = 9) of PCMHs to examine current care coordination infrastructure and capacity through a mixed- methods analysis. Data included qualitative interviews, quantitative surveys, and fieldnotes collected during 10- to 12-day onsite observations at each practice. Case studies included practices in five states with diverse business models and settings. Eight of the nine practices had National Committee for Quality Assurance Leve...
Hikikomori ('social withdrawal') appeared in Japan at the end of the twentieth century, inciting ... more Hikikomori ('social withdrawal') appeared in Japan at the end of the twentieth century, inciting public panic about a generation of Japanese youth who shun social contact and fail to engage in the age-appropriate activities of young adulthood. Widely cited as a 'condition' rather than a psychiatric symptom or disorder, hikikomori has functioned variously as a diagnosis of individuals, families, and society at large. Taking the polysemous (and controversial) nature of hikikomori as a starting point, we draw on fourteen months of ethnographic research to explore how families negotiate a diagnosis of hikikomori in everyday life. Our focus on families opens up fruitful questions about the moral economies of life under diagnosis, not simply for the diagnosed individual, but also for those who assume responsibility for that individual's health and wellbeing.
Most primary care researchers lack a practical approach for including field observations in their... more Most primary care researchers lack a practical approach for including field observations in their studies, even though observations can offer important qualitative insights and provide a mechanism for documenting behaviors, events, and unexpected occurrences. We present an overview of unstructured field observations as a qualitative research method for analyzing material surroundings and social interactions. We then detail a practical approach to collecting and recording observational data through a "3 Cs" template of content, context, and concepts. To demonstrate how this method works in practice, we provide an example of a completed template and discuss the analytical approach used during a study on informed consent for research participation in the primary care setting of Qatar.
Observers of the past 10 to 15 years have witnessed the simultaneous growth of
dramatic changes i... more Observers of the past 10 to 15 years have witnessed the simultaneous growth of dramatic changes in the practice of primary care and the emergence of a new field of dissemination and implementation science (D&I). Most current implementation science research in primary care assumes practices are not meeting externally derived standards and need external support to meet these demands. After a decade of initiatives, many stakeholders now question the return on their investments. Overall improvements in quality metrics, utilization cost savings, and patient experience have been less than anticipated. While recently conducting a research project in primary care practices, we unexpectedly discovered 3 practices that profoundly shifted our thinking about the sources and directionality of practice change and the underlying assumptions of D&I. Inspired by these practices—along with systems thinking, complexity theory, action research, and the collaborative approaches of community-based participatory research—we propose a reimagining of D&I theory to empower practices. We shift the emphasis regarding the source and direction of change from outside-in to inside-out. Such a shift has the potential to open a new frontier in the science of dissemination and implementation and inform better health policy.
This article presents an account of how Japanese parents in a family
support group for mental ill... more This article presents an account of how Japanese parents in a family support group for mental illness constructed understandings of care for adult children with serious mental illness, primarily schizophrenia. I build from Janis H. Jenkins’s research on the ‘‘extraordinary condition’’ of schizophrenia to discuss ‘‘extraordinary care,’’ which parents practiced as a way to refute cultural and clinical beliefs about pathogenic families and degenerative diseases. Parents’ accounts of extraordinary care revealed a reliance on biomedical knowledge to treat the symptoms of mental illness coupled with an ongoing determination to improve children’s lives beyond what psychiatry could offer. Extraordinary care thus points to the therapeutic limits of biomedical psychiatry while also reinforcing the significance of social relations as families work toward recovery.
Importance: Despite a decade of effort by national stakeholders to bring cancer survivorship to ... more Importance: Despite a decade of effort by national stakeholders to bring cancer survivorship to the forefront of primary care, there is little evidence to suggest that primary care has begun to integrate comprehensive services to manage the care of long-term cancer survivors.
Objective: To explain why primary care has not begun to integrate comprehensive cancer survivorship services.
Design, Setting, and Participants: Comparative case study of 12 advanced primary care practices in the United States recruited from March 2015 to February 2017. Practices were selected from a national registry of 151 workforce innovators compiled for the Robert Wood Johnson Foundation. Practices were recruited to include diversity in policy context and organizational structure. Researchers conducted 10 to 12 days of ethnographic data collection in each practice, including interviews with practice personnel and patient pathways with cancer survivors. Fieldnotes, transcripts, and practice documents were analyzed within and across cases to identify salient themes.
Main Outcomes and Measures: Description of cancer survivorship care delivery in advanced patient-centered medical homes, including identification of barriers and promotional factors related to that care.
Results: The 12 practices came from multiple states and policy contexts and had a mix of clinicians trained in family or internal medicine. All but 3 were recognized as National Committee on Quality Assurance level 3 patient-centered medical homes. None of the practices provided any type of comprehensive cancer survivorship services. Three interdependent explanatory factors emerged: the absence of a recognized, distinct clinical category of survivorship in primary care; a lack of actionable information to treat this patient population; and current information systems unable to support survivorship care.
Conclusions and Relevance: To increase the potential for primary care transformation efforts to integrate survivorship services into routine care, survivorship must become a recognized clinical category with actionable care plans supported by a functional information system infrastructure.
This study describes the experiences of early implementers of primary care-focused cancer survivo... more This study describes the experiences of early implementers of primary care-focused cancer survivorship delivery models.
Growing research has highlighted that the first few years of psychotic illnesses constitute a “cr... more Growing research has highlighted that the first few years of psychotic illnesses constitute a “critical period” in which (i) the majority of the functional deterioration that accompanies these illnesses occurs, and (ii) individuals are most responsive to both pharmacological and psychosocial treatments for psychosis and its deleterious sequelae. Clinical interest in intervening earlier in psychotic episodes, and what early intervention might mean for a person’s symptom reduction and social functioning, has emerged within a decades-long history of social science research on the concept of recovery. In this article, we describe the intersection between the long-standing interest in recovery and the more recent attention to first-episode psychosis as a way of highlighting conundrums that may arise as clinicians engage with their clients following a first episode of psychosis. We suggest ways of addressing these situations by highlighting several complementary or alternative approaches to traditional psychiatric treatment and conclude with a call to rethink ways of doing research on recovery in first-episode psychosis.
Hikikomori (‘social withdrawal’) appeared in Japan at the end of the twentieth century, inciting ... more Hikikomori (‘social withdrawal’) appeared in Japan at the end of the twentieth century, inciting public panic about a generation of Japanese youth who shun social contact and fail to engage in the age-appropriate activities of young adulthood. Widely cited as a ‘condition’ rather than a psychiatric symptom or disorder, hikikomori has functioned variously as a diagnosis of individuals, families, and society at large. Taking the polysemous (and controversial) nature of hikikomori as a starting point, we draw on fourteen months of ethnographic research to explore how families negotiate a diagnosis of hikikomori in everyday life. Our focus on families opens up fruitful questions about the moral economies of life under diagnosis, not simply for the diagnosed individual, but also for those who assume responsibility for that individual’s health and wellbeing.
Background Management of care transitions from primary care into and out of oncology is critical ... more Background Management of care transitions from primary care into and out of oncology is critical for optimal care of cancer patients and cancer survivors. There is limited understanding of existing primary care-oncology relationships within the context of the changing health care environment. Methods Through a comparative case study of 14 innovative primary care practices throughout the United States (U.S.), we examined relationships between primary care and oncology settings to identify attributes contributing to strengthened relationships in diverse settings. Field researchers observed practices for 10–12 days, recording fieldnotes and conducting interviews. We created a reduced dataset of all text related to primary care-oncology relationships, and collaboratively identified patterns to characterize these relationships through an inductive “immersion/crystallization” analysis process. Results Nine of the 14 practices discussed having either formal or informal primary care-oncolog...
80 Background: Improvements in the management of care transitions between primary care and oncolo... more 80 Background: Improvements in the management of care transitions between primary care and oncology are critical for achieving optimal care quality and outcomes for cancer patients and survivors. We examine relationships between innovative PC practices and oncologists to inform and strengthen PC-oncology interfaces in diverse healthcare settings. Methods: Comparative case studies of 14 innovative PC practices throughout the United States examined strategies for providing cancer survivorship care. Field researchers observed each practice for 10-12 days, recording fieldnotes and conducting key informant and formal, semi-structured interviews with clinicians and staff. We extracted all data related to PC-oncology relationships and then collaboratively identified patterns to characterize these relationships through an inductive “immersion/crystallization” analysis process. Results: Nine of the 14 practices discussed either formal or informal PC-oncology relationships. Nearly all practic...
Psychotic spectrum disorders are serious illnesses with symptoms that significantly impact functi... more Psychotic spectrum disorders are serious illnesses with symptoms that significantly impact functioning and quality of life. An accumulating body of literature has demonstrated that specialized treatments that are offered early after symptom onset are disproportionately more effective in managing symptoms and improving outcomes than when these same treatments are provided later in the course of illness. Specialized, multicomponent treatment packages are of particular importance, which are comprised of services offered as soon as possible after the onset of psychosis with the goal of addressing multiple care needs within a single care setting. As specialized programs continue to develop worldwide, it is crucial to consider how to increase access to such specialized services. In the current review, we utilize an ecological model of understanding barriers to care, with emphasis on understanding how individuals with first-episode psychosis interact with and are influenced by a variety of...
There are currently 15.5 million cancer survivors in USA who are increasingly relying on primary ... more There are currently 15.5 million cancer survivors in USA who are increasingly relying on primary care providers for their care. Patient-Centered Medical Homes (PCMHs) have the potential to meet the unique needs of cancer survivors; but, few studies have examined PCMH attributes as potential resources for delivering survivorship care. This study assesses the current care coordination infrastructure in advanced PCMHs, known to be innovative, and explores their capacity to provide cancer survivorship care. We conducted comparative case studies of a purposive sample (n = 9) of PCMHs to examine current care coordination infrastructure and capacity through a mixed- methods analysis. Data included qualitative interviews, quantitative surveys, and fieldnotes collected during 10- to 12-day onsite observations at each practice. Case studies included practices in five states with diverse business models and settings. Eight of the nine practices had National Committee for Quality Assurance Leve...
For individuals who are food insecure, food pantries can be a vital resource to improve access to... more For individuals who are food insecure, food pantries can be a vital resource to improve access to adequate food. Access to adequate food may be conceptualized within five dimensions: availability (item variety), accessibility (e.g., hours of operation), accommodation (e.g., cultural sensitivity), affordability (costs, monetary or otherwise), and acceptability (e.g., as related to quality). This study examined the five dimensions of access in a convenience sample of 50 food pantries in the Bronx, NY. The design was cross-sectional. Qualitative data included researcher observations and field notes from unstructured interviews with pantry workers. Quantitative data included frequencies for aspects of food access, organized by the five access dimensions. Inductive analysis of quantitative and qualitative data revealed three main inter-related findings: (1) Pantries were not reliably open: only 50% of pantries were open during hours listed in an online directory (several had had prolonge...
This article presents an account of how Japanese parents in a family support group for mental ill... more This article presents an account of how Japanese parents in a family support group for mental illness constructed understandings of care for adult children with serious mental illness, primarily schizophrenia. I build from Janis H. Jenkins's research on the "extraordinary condition" of schizophrenia to discuss "extraordinary care," which parents practiced as a way to refute cultural and clinical beliefs about pathogenic families and degenerative diseases. Parents' accounts of extraordinary care revealed a reliance on biomedical knowledge to treat the symptoms of mental illness coupled with an ongoing determination to improve children's lives beyond what psychiatry could offer. Extraordinary care thus points to the therapeutic limits of biomedical psychiatry while also reinforcing the significance of social relations as families work toward recovery.
The degree and quality of resilience in patients with depression have never been investigated in ... more The degree and quality of resilience in patients with depression have never been investigated in the context of remission status, spirituality/religiosity, and family members' resilience levels, which was addressed in this study. This cross-sectional study recruited Japanese outpatients with depressive disorder according to ICD-10 and cohabitant family members who were free from psychiatric diagnoses. Resilience was assessed using the 25-item Resilience Scale (RS). Other assessments included the Montgomery-Asberg Depression Rating Scale (MADRS); the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT) and Kasen et al.'s (2012) scale for spirituality/religiosity; and the Rosenberg Self-Esteem Scale (RSES). One hundred outpatients with depression (mean±SD age, 50.8±14.5years; 44 men; MADRS total score 9.8±9.0) and 36 healthy family members (mean±SD age, 56.5±15.0years; 18 men) were included. Symptom severity, attendance at religious/spiritual ser...
Hikikomori, often glossed as "social withdrawal," emerged as a sociomedical condition a... more Hikikomori, often glossed as "social withdrawal," emerged as a sociomedical condition among Japanese youth at the end of the twentieth century, and it continues to fascinate and concern the public. Explanatory frameworks for hikikomori abound, with different stakeholders attributing it to individual psychopathology, poor parenting, and/or a lack of social support structures. This article takes an interpretive approach to hikikomori by exploring parents' narrative constructions of hikikomori children in support group meetings and in-depth interviews. I argue that some parents were able to find hope in hikikomori by 'emplotting' their children's experiences into a larger narrative about onset, withdrawal, and recovery, which helped them remain invested in the present by maintaining a sense of possibility about the future. Contrary to literature that examines hikikomori as an epidemic of isolated individuals, I demonstrate how parents play a key role in hikiko...
There are currently 15.5 million cancer survivors in USA who are increasingly relying on primary ... more There are currently 15.5 million cancer survivors in USA who are increasingly relying on primary care providers for their care. Patient-Centered Medical Homes (PCMHs) have the potential to meet the unique needs of cancer survivors; but, few studies have examined PCMH attributes as potential resources for delivering survivorship care. This study assesses the current care coordination infrastructure in advanced PCMHs, known to be innovative, and explores their capacity to provide cancer survivorship care. We conducted comparative case studies of a purposive sample (n = 9) of PCMHs to examine current care coordination infrastructure and capacity through a mixed- methods analysis. Data included qualitative interviews, quantitative surveys, and fieldnotes collected during 10- to 12-day onsite observations at each practice. Case studies included practices in five states with diverse business models and settings. Eight of the nine practices had National Committee for Quality Assurance Leve...
Hikikomori ('social withdrawal') appeared in Japan at the end of the twentieth century, inciting ... more Hikikomori ('social withdrawal') appeared in Japan at the end of the twentieth century, inciting public panic about a generation of Japanese youth who shun social contact and fail to engage in the age-appropriate activities of young adulthood. Widely cited as a 'condition' rather than a psychiatric symptom or disorder, hikikomori has functioned variously as a diagnosis of individuals, families, and society at large. Taking the polysemous (and controversial) nature of hikikomori as a starting point, we draw on fourteen months of ethnographic research to explore how families negotiate a diagnosis of hikikomori in everyday life. Our focus on families opens up fruitful questions about the moral economies of life under diagnosis, not simply for the diagnosed individual, but also for those who assume responsibility for that individual's health and wellbeing.
Most primary care researchers lack a practical approach for including field observations in their... more Most primary care researchers lack a practical approach for including field observations in their studies, even though observations can offer important qualitative insights and provide a mechanism for documenting behaviors, events, and unexpected occurrences. We present an overview of unstructured field observations as a qualitative research method for analyzing material surroundings and social interactions. We then detail a practical approach to collecting and recording observational data through a "3 Cs" template of content, context, and concepts. To demonstrate how this method works in practice, we provide an example of a completed template and discuss the analytical approach used during a study on informed consent for research participation in the primary care setting of Qatar.
Observers of the past 10 to 15 years have witnessed the simultaneous growth of
dramatic changes i... more Observers of the past 10 to 15 years have witnessed the simultaneous growth of dramatic changes in the practice of primary care and the emergence of a new field of dissemination and implementation science (D&I). Most current implementation science research in primary care assumes practices are not meeting externally derived standards and need external support to meet these demands. After a decade of initiatives, many stakeholders now question the return on their investments. Overall improvements in quality metrics, utilization cost savings, and patient experience have been less than anticipated. While recently conducting a research project in primary care practices, we unexpectedly discovered 3 practices that profoundly shifted our thinking about the sources and directionality of practice change and the underlying assumptions of D&I. Inspired by these practices—along with systems thinking, complexity theory, action research, and the collaborative approaches of community-based participatory research—we propose a reimagining of D&I theory to empower practices. We shift the emphasis regarding the source and direction of change from outside-in to inside-out. Such a shift has the potential to open a new frontier in the science of dissemination and implementation and inform better health policy.
This article presents an account of how Japanese parents in a family
support group for mental ill... more This article presents an account of how Japanese parents in a family support group for mental illness constructed understandings of care for adult children with serious mental illness, primarily schizophrenia. I build from Janis H. Jenkins’s research on the ‘‘extraordinary condition’’ of schizophrenia to discuss ‘‘extraordinary care,’’ which parents practiced as a way to refute cultural and clinical beliefs about pathogenic families and degenerative diseases. Parents’ accounts of extraordinary care revealed a reliance on biomedical knowledge to treat the symptoms of mental illness coupled with an ongoing determination to improve children’s lives beyond what psychiatry could offer. Extraordinary care thus points to the therapeutic limits of biomedical psychiatry while also reinforcing the significance of social relations as families work toward recovery.
Importance: Despite a decade of effort by national stakeholders to bring cancer survivorship to ... more Importance: Despite a decade of effort by national stakeholders to bring cancer survivorship to the forefront of primary care, there is little evidence to suggest that primary care has begun to integrate comprehensive services to manage the care of long-term cancer survivors.
Objective: To explain why primary care has not begun to integrate comprehensive cancer survivorship services.
Design, Setting, and Participants: Comparative case study of 12 advanced primary care practices in the United States recruited from March 2015 to February 2017. Practices were selected from a national registry of 151 workforce innovators compiled for the Robert Wood Johnson Foundation. Practices were recruited to include diversity in policy context and organizational structure. Researchers conducted 10 to 12 days of ethnographic data collection in each practice, including interviews with practice personnel and patient pathways with cancer survivors. Fieldnotes, transcripts, and practice documents were analyzed within and across cases to identify salient themes.
Main Outcomes and Measures: Description of cancer survivorship care delivery in advanced patient-centered medical homes, including identification of barriers and promotional factors related to that care.
Results: The 12 practices came from multiple states and policy contexts and had a mix of clinicians trained in family or internal medicine. All but 3 were recognized as National Committee on Quality Assurance level 3 patient-centered medical homes. None of the practices provided any type of comprehensive cancer survivorship services. Three interdependent explanatory factors emerged: the absence of a recognized, distinct clinical category of survivorship in primary care; a lack of actionable information to treat this patient population; and current information systems unable to support survivorship care.
Conclusions and Relevance: To increase the potential for primary care transformation efforts to integrate survivorship services into routine care, survivorship must become a recognized clinical category with actionable care plans supported by a functional information system infrastructure.
This study describes the experiences of early implementers of primary care-focused cancer survivo... more This study describes the experiences of early implementers of primary care-focused cancer survivorship delivery models.
Growing research has highlighted that the first few years of psychotic illnesses constitute a “cr... more Growing research has highlighted that the first few years of psychotic illnesses constitute a “critical period” in which (i) the majority of the functional deterioration that accompanies these illnesses occurs, and (ii) individuals are most responsive to both pharmacological and psychosocial treatments for psychosis and its deleterious sequelae. Clinical interest in intervening earlier in psychotic episodes, and what early intervention might mean for a person’s symptom reduction and social functioning, has emerged within a decades-long history of social science research on the concept of recovery. In this article, we describe the intersection between the long-standing interest in recovery and the more recent attention to first-episode psychosis as a way of highlighting conundrums that may arise as clinicians engage with their clients following a first episode of psychosis. We suggest ways of addressing these situations by highlighting several complementary or alternative approaches to traditional psychiatric treatment and conclude with a call to rethink ways of doing research on recovery in first-episode psychosis.
In 2006, the Institute of Medicine released a report detailing how cancer survivors in the United... more In 2006, the Institute of Medicine released a report detailing how cancer survivors in the United States were "lost in transition" from specialty to primary care. Here, I address a different problem: that of being "lost in translation." Interviews with cancer survivors in community-based primary care practices across the United States revealed a fundamental disconnect between survivorship rhetoric and patients' perspectives on what was clinically, emotionally, and physically relevant to them. In reflecting on this disconnect, I ask how anthropologists can negotiate top-down stakeholder interests with ground-level understandings in biomedical research settings, where clinicians and biomedical scientists often dictate the terms of research. I argue that anthropology has a valuable role to play in teasing out the complexities of clinical and identity categories in biomedical research.
Heinemann’s work eschews the dramatic moment of transplant surgery in favor of detailing the tran... more Heinemann’s work eschews the dramatic moment of transplant surgery in favor of detailing the transplant process as it occurs across space and time, always intertwined within the rhythms and realities of everyday life. Based on 24 nonconsecutive months of fieldwork and 100 interviews with patients, caregivers, and health practitioners in the Midwestern U.S. city of “Metrotown,” Heinemann shows how a “need” for organ transplantation emerges from a complex interplay of biological pathologies, social biographies, and structural inequalities. Building on Tim Ingold’s (2011) concept of “wayfaring,” Heinemann follows the movement of care and caring practices as people move toward, away, and through the transplant process. She situates her work within the scholarship on the feminist ethics of care, following Cheryl Brandsen’s (2006) call for a “public ethics of care” and the need for care to be treated as a shared public responsibility rather than relegating it to the private domain.
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Papers by Ellen Rubinstein
dramatic changes in the practice of primary care and the emergence of a new
field of dissemination and implementation science (D&I). Most current implementation
science research in primary care assumes practices are not meeting externally derived standards and need external support to meet these demands. After a decade of initiatives, many stakeholders now question the return on their investments. Overall improvements in quality metrics, utilization cost savings, and patient experience have been less than anticipated. While recently conducting a research project in primary care practices, we unexpectedly discovered 3 practices that profoundly shifted our thinking about the sources and directionality of practice change and the underlying assumptions of D&I. Inspired by these practices—along with systems thinking, complexity theory, action research, and the collaborative approaches of community-based participatory research—we propose a reimagining of D&I theory to empower practices. We shift the emphasis regarding the source and direction of change from outside-in to inside-out. Such a shift has the potential to open a new frontier in the science of dissemination and implementation and inform better health policy.
support group for mental illness constructed understandings of care for adult children with serious mental illness, primarily schizophrenia. I build from Janis H. Jenkins’s research on the ‘‘extraordinary condition’’ of schizophrenia to discuss ‘‘extraordinary care,’’ which parents practiced as a way to refute cultural and clinical beliefs about pathogenic families and degenerative diseases. Parents’ accounts of extraordinary care revealed a reliance on biomedical knowledge to treat the symptoms of mental illness coupled with an ongoing determination to improve children’s lives beyond what psychiatry could offer. Extraordinary care thus points to the therapeutic limits of biomedical psychiatry while also reinforcing the significance of social relations as families work toward recovery.
Objective: To explain why primary care has not begun to integrate comprehensive cancer survivorship services.
Design, Setting, and Participants: Comparative case study of 12 advanced primary care practices in the United States recruited from March 2015 to February 2017. Practices were selected from a national registry of 151 workforce innovators compiled for the Robert Wood Johnson Foundation. Practices were recruited to include diversity in policy context and organizational structure. Researchers conducted 10 to 12 days of ethnographic data collection in each practice, including interviews with practice personnel and patient pathways with cancer survivors. Fieldnotes, transcripts, and practice documents were analyzed within and across cases to identify salient themes.
Main Outcomes and Measures: Description of cancer survivorship care delivery in advanced patient-centered medical homes, including identification of barriers and promotional factors related to that care.
Results: The 12 practices came from multiple states and policy contexts and had a mix of clinicians trained in family or internal medicine. All but 3 were recognized as National Committee on Quality Assurance level 3 patient-centered medical homes. None of the practices provided any type of comprehensive cancer survivorship services. Three interdependent explanatory factors emerged: the absence of a recognized, distinct clinical category of survivorship in primary care; a lack of actionable information to treat this patient population; and current information systems unable to support survivorship care.
Conclusions and Relevance: To increase the potential for primary care transformation efforts to integrate survivorship services into routine care, survivorship must become a recognized clinical category with actionable care plans supported by a functional information system infrastructure.
dramatic changes in the practice of primary care and the emergence of a new
field of dissemination and implementation science (D&I). Most current implementation
science research in primary care assumes practices are not meeting externally derived standards and need external support to meet these demands. After a decade of initiatives, many stakeholders now question the return on their investments. Overall improvements in quality metrics, utilization cost savings, and patient experience have been less than anticipated. While recently conducting a research project in primary care practices, we unexpectedly discovered 3 practices that profoundly shifted our thinking about the sources and directionality of practice change and the underlying assumptions of D&I. Inspired by these practices—along with systems thinking, complexity theory, action research, and the collaborative approaches of community-based participatory research—we propose a reimagining of D&I theory to empower practices. We shift the emphasis regarding the source and direction of change from outside-in to inside-out. Such a shift has the potential to open a new frontier in the science of dissemination and implementation and inform better health policy.
support group for mental illness constructed understandings of care for adult children with serious mental illness, primarily schizophrenia. I build from Janis H. Jenkins’s research on the ‘‘extraordinary condition’’ of schizophrenia to discuss ‘‘extraordinary care,’’ which parents practiced as a way to refute cultural and clinical beliefs about pathogenic families and degenerative diseases. Parents’ accounts of extraordinary care revealed a reliance on biomedical knowledge to treat the symptoms of mental illness coupled with an ongoing determination to improve children’s lives beyond what psychiatry could offer. Extraordinary care thus points to the therapeutic limits of biomedical psychiatry while also reinforcing the significance of social relations as families work toward recovery.
Objective: To explain why primary care has not begun to integrate comprehensive cancer survivorship services.
Design, Setting, and Participants: Comparative case study of 12 advanced primary care practices in the United States recruited from March 2015 to February 2017. Practices were selected from a national registry of 151 workforce innovators compiled for the Robert Wood Johnson Foundation. Practices were recruited to include diversity in policy context and organizational structure. Researchers conducted 10 to 12 days of ethnographic data collection in each practice, including interviews with practice personnel and patient pathways with cancer survivors. Fieldnotes, transcripts, and practice documents were analyzed within and across cases to identify salient themes.
Main Outcomes and Measures: Description of cancer survivorship care delivery in advanced patient-centered medical homes, including identification of barriers and promotional factors related to that care.
Results: The 12 practices came from multiple states and policy contexts and had a mix of clinicians trained in family or internal medicine. All but 3 were recognized as National Committee on Quality Assurance level 3 patient-centered medical homes. None of the practices provided any type of comprehensive cancer survivorship services. Three interdependent explanatory factors emerged: the absence of a recognized, distinct clinical category of survivorship in primary care; a lack of actionable information to treat this patient population; and current information systems unable to support survivorship care.
Conclusions and Relevance: To increase the potential for primary care transformation efforts to integrate survivorship services into routine care, survivorship must become a recognized clinical category with actionable care plans supported by a functional information system infrastructure.
time, always intertwined within the rhythms and realities of everyday life.
Based on 24 nonconsecutive months of fieldwork and 100 interviews with patients, caregivers, and health practitioners in the Midwestern U.S. city of “Metrotown,” Heinemann shows how a “need” for organ transplantation emerges from a complex interplay of biological pathologies, social biographies, and structural inequalities. Building on Tim Ingold’s (2011) concept of “wayfaring,” Heinemann follows the movement of care and caring practices as people move toward, away, and through the transplant process. She situates her work within the scholarship on the feminist ethics of care, following Cheryl Brandsen’s (2006) call for a “public ethics of care” and the need for care to be treated as a shared public responsibility rather than relegating it to the private domain.