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MCL RESEARCH & INITIATIVES

All of our work seeks to understand medical culture and advance health equity.

 

ADVANCED CANCER & EARLY PHASE CLINICAL TRIALS

MCL has an enduring interest in how patients’ decisions unfold within the scaffolding of established medical institutions. Patients with advanced cancer face difficult and complex decisions shaped by multiple institutions simultaneously. As standard chemotherapeutic and biologic treatment options diminish,  advanced cancer patients may have the option to join an early phase (EP) trial of a new investigational therapy. The Cancer Patient Deliberation study at MCL examined patients’ EP trial decision-making. Cancer EP trials typically involve a tiny number of patients who will try out a new therapy for the first time. Such trials represent a high-stakes moment in the drug development pipeline even though the vast majority of investigational therapies will ultimately fail. With support from an R01 from the National Cancer Institute, MCL members Dan Dohan, Corey Abramson, Chris Koenig, and Sarah Garrett were part of a team that examined how cancer patients who had exhausted standard therapy navigated the terrain of EP trials. Using comparative ethnography in multiple clinics and cities, we examined which patients knew about EP trials, who were offered the opportunity to participate, how they navigated this complex therapeutic terrain, and how we might improve our ability to study medical culture in the context of advanced cancer.

MCL members include Corey Abramson, Dan Dohan, Sarah Garrett, Chris Koenig


Example publications

  • Garrett, Sarah B., Thea M. Matthews, Corey M. Abramson, Christopher J. Koenig, Fay J. Hlubocky, Christopher K. Daugherty, Pamela N. Munster, and Daniel Dohan. "Before Consent: Qualitative Analysis of Deliberations of Patients With Advanced Cancer About Early-Phase Clinical Trials." JCO Oncology Practice 16, no. 1 (2020): e56-e63.

  • Garrett, Sarah B., Corey M. Abramson, Katharine A. Rendle, and Daniel Dohan. "Approaches to decision-making among late-stage melanoma patients: a multifactorial investigation." Supportive Care in Cancer 27, no. 3 (2019): 1059-1070

  • Dunn, Laura B., Jim Wiley, Sarah Garrett, Fay Hlubocky, Christopher Daugherty, Laura Trupin, Pamela Munster, and Daniel Dohan. 2017. “Interest in Initiating an Early Phase Clinical Trial: Results of a Longitudinal Study of Advanced Cancer Patients.” Psycho-Oncology 26(10):1604–10. doi: 10.1002/pon.4179.

  • Garrett, Sarah B., Christopher J. Koenig, Laura Trupin, Fay J. Hlubocky, Christopher K. Daugherty, Anne Reinert, Pamela Munster, and Daniel Dohan. "What advanced cancer patients with limited treatment options know about clinical research: a qualitative study." Supportive Care in Cancer 25, no. 10 (2017): 3235-3242

  • Abramson, Corey M., and Daniel Dohan. 2015. “Beyond Text: Using Arrays to Represent and Analyze Ethnographic Data.” Sociological Methodology 45(1):272–319. doi: 10.1177/0081175015578740.

  • Koenig, Christopher J., Evelyn Y. Ho, Laura Trupin, and Daniel Dohan. 2015. “An Exploratory Typology of Provider Responses That Encourage and Discourage Conversation about Complementary and Integrative Medicine during Routine Oncology Visits.” Patient Education and Counseling 98(7):857–63. doi: 10.1016/j.pec.2015.02.018.

 

ALZHEIMER'S & RELATED DEMENTIAS

Dementia is a major and growing challenge to the United States healthcare system and globally. More than 5 million Americans are currently living with Alzheimer’s disease and related dementias (ADRD), with cases expected to triple over the next thirty years. Furthermore, more than 15 million family members or friends provide care for individuals with ADRD, which involves immense emotional, physical, and practical support. There are also currently major inequities in the evaluation, diagnosis, and management of ADRD.


MCL members Alissa Bernstein Sideman, Krista Harrison, Dan Dohan, Liz Dzeng and Tobias Haeusermann all engage in qualitative and mixed-methods research focused on understanding the experiences and needs of people with ADRD, their caregivers, and their providers and the cultures of decision-making and care in these neurodegenerative diseases. Through community-engaged work they are involved in building and studying interventions to improve the lives and experiences of care of people with ADRD and their families. Projects focus on improving dementia evaluation and care in primary care settings through the implementation and study of new tools and workup approaches, innovations in supportive services and care for family caregivers of people with dementia, building better palliative care supports in ADRD, with a focus on rapidly progressing dementias, and understanding global perspectives and challenges faced in dementia assessment and care. Through collaborations with the UCSF Memory and Aging Center, the Global Brain Health Institute, and the Division of Geriatrics, an overarching goal of our work is to make ADRD evaluation and care more equitable and to better understand the role of culture in the experience and care of ADRD. 


MCL members involved: Alissa Bernstein Sideman, Dan Dohan, Liz Dzeng, Krista Harrison, and Tobias Haeusermann


Collaborators and projects include:

https://www.gbhi.org/

https://rankinlab.ucsf.edu/

https://www.detectcid.org/

https://memory.ucsf.edu/research-trials/professional/care-ecosystem


Publications: 

  • Bernstein A, Merrilees J, Dulaney S, Harrison KL, Chiong W, Ong P, Heunis J, Choi J, Walker R, Feuer JE, Lee K, Dohan D, Bonasera SJ, Miller BL, Possin KL. Using care navigation to address caregiver burden in dementia: A qualitative case study analysis. Alzheimers Dement (N Y). 2020; 6(1):e12010. PMID

  • Harrison, Krista L., Theresa A. Allison, Sarah B. Garrett, Nicole Thompson, Rebecca L. Sudore, and Christine S. Ritchie. "Hospice Staff Perspectives on Caring for People with Dementia: A Multisite, Multistakeholder Study." Journal of Palliative Medicine (2020).

  • Harrison, Krista, Sarah Garrett, Alissa Bernstein, Georges Naasan, and Christine Ritchie. "“I needed someone to hold my hand”: Experiences and Unmet Palliative Care Needs at Home from the Perspective of People with Dementia and Caregivers (GP741)." Journal of Pain and Symptom Management 60, no. 1 (2020): 269-270.

  • Haeusermann, Tobias. "Forced continuity: Explorations of biographical narratives in dementia care." Journal of aging studies 49 (2019): 1-8.

  • Bernstein A, Harrison KL, Dulaney S, Merrilees J, Bowhay A, Heunis J, Choi J, Feuer JE, Clark AM, Chiong W, Lee K, Braley TL, Bonasera SJ, Ritchie CS, Dohan D, Miller BL, Possin KL.The Role of Care Navigators Working with People with Dementia and Their Caregivers. J Alzheimers Dis. 2019; 71(1):45-55. PMID: 31322558.

  • Harrison, Krista L., Lauren J. Hunt, Christine S. Ritchie, and Kristine Yaffe. "Dying with Dementia: Under-recognized and Stigmatized." Journal of the American Geriatrics Society 67, no. 8 (2019): 1548.

  • Haeusermann, Tobias. "The dementia village: between community and society." In Care in Healthcare, pp. 135-167. Palgrave Macmillan, Cham, 2018.

  • Haeusermann, Tobias. "Professionalised intimacy: how dementia care workers navigate between domestic intimacy and institutional detachment." Sociology of health & illness 40, no. 5 (2018): 907-923.

  • Haeusermann, Tobias. "The dementias-A review and a call for a disaggregated approach." Journal of aging studies 42 (2017): 22.

  • Abramson, Corey M. 2009. “Who Are the Clients?: Goal Displacement in an Adult Day Care Center for Elders with Dementia.” International Journal of Aging and Human Development 68:65-92. (link)

 

BURDENSOME CARE

The term “burdensome care” in the dementia palliative care literature traditionally refers to treatments with the potential to cause harm and suffering with little chance of benefit.30 Hospitalization, ICU admission, and life-sustaining treatments (LST) such as mechanical ventilation and resuscitation are frequently used as a defining metric for burdensome LST in patients with advanced dementia. Burdensome treatments that are not aligned with patient preferences nor in the patient’s best interest have been linked to poor quality of care, reduced quality of life, and low-value care. Dementia can exact a devastating financial, emotional, and mental toll on caregivers that is exacerbated by burdensome treatments.Caregivers suffer negative consequences of depression and post-traumatic stress disorder (PTSD). Multi-morbidity in older adults with ADRD confers additional susceptibilities to iatrogenic harms and delirium from common ICU treatments and poly-pharmacy. Other interventions that occur in the ICU such as antibiotics and feeding tubes have also been found to have been frequently inappropriate and of limited or no benefit. Because the vast majority of healthcare proxies of older adults with advanced dementia prefer a comfort oriented approach, improving care for these older adults near the EOL should focus on broadening palliative care access and fostering a culture supporting reduced burdensome treatments.


MCL members working in this area include Liz Dzeng and Dan Dohan.


Example publications

  • Dzeng E, Colaianni A, Chander G, Smith TJ, Roland M, Kelly MP, Barclay S, Levine D. “Influence of Institutional Culture and Policies on Do Not Resuscitate Decision-Making at the End of Life” JAMA Intern Med. 2015; 175(5): 812-9.

  • Dzeng E, Dohan D, Curtis JR, Colaianni A, Ritchie C. “Homing in on the Social: Systems-level Influences on Overly Aggressive Care at the End of Life.” Journal of Pain and Symptom Management. 2018 Feb; 55(2): 282-289. DOI: http://dx.doi.org/10.1016/j.jpainsymman.2017.08.019

 

GENDER & CAREERS IN ACADEMIC MEDICINE

In recent decades, women have entered medicine in increasing numbers and now constitute the majority of medical students and physician trainees. However, women remain under-represented in positions of power and prestige within academic medicine, such as department chairs, deans, and endowed professorships. MCL supports a qualitative study on gender inequities in academic medicine, which examines the ways in which the institutional culture(s) of academic medicine may contribute to the persistence of these disparities, and other forms of gender inequities.

MCL members Dan Dohan and Marie Murphy collaborate with UCSF Professor Jenny Grandis in this work.

 

HEALTH COMMUNICATION

Communication practices and actions are integral to the study of culture. Health communication traditionally has studied provider-patient communication bridges culture of everyday life in general with cultures of medicine in particular. More contemporary studies of health communication has also addressed experiences of health and illness using communication as a focal lens for investigating the individual’s relationships to the illness trajectory, social networks, and uncertainty; biocommunicatibility focusing on the role of the media to demonstrate how disease, illness, and health policies are disseminated; and conversational structures that organize the communication process according to setting (institutional, clinical, everyday life), event and situation, modality (face-to-face vs. online/digitally mediated), and participant types (clinicians, family, peers).


MCL Members Involved: Chris Koenig, Alissa Bernstein Sideman


Example Projects

  • Health Care Provider experiences with the rapid transition from face-to-face to virtual clinical visits in response to the COVID-19 pandemic (Chris Koenig)

  • Biomedicalization, psychedelic medicine, and psychedelic integration therapy (Chris Koenig)


Example Publications

  • Bernstein A. Personal and political histories in the designing of health reform policy in Bolivia. Soc Sci Med. 2017 03; 177:231-238. 

  • Bernstein A. Proliferating Policy: Technologies, Performance, and Aesthetics in the Circulation and Governance of Health Care Reform in Bolivia. Political and Legal Anthropology Review. 2018; 42(2):262-276. 

  • Koenig CJ, Wenger M, Graham GD, Asch S, Rongey C. “Managing professional knowledge boundaries during SCAN-ECHO teleconsultations in two Veterans’ Affairs’ specialty care liver clinics: A theme-oriented Discourse Analysis.” Journal of Telemedicine and Telecare. 2019; 25(3): 181-189

  • Koenig CJ, Ho EY, Trupin L, Dohan D. “An exploratory typology of provider responses that encourage and discourage conversation about complementary and alternative medicine during routine oncology appointments.” Patient Education & Counseling. 2015; 98(7): 857-863.

  • Hoffmann-Longtin, K, Kerr AM, Shaunfield, S, Koenig CJ, Bylund CL, Clayton MF. “Health Communication Careers in the Space Between: Interdisciplinary Boundary Spanners.” Health Communication. In press.

 

IMPROVING CARE FOR OLDER ADULTS

Older adults receive care in a variety of spaces, including private homes, medical clinics, long-term care facilities, and hospice facilities. Research on the needs, desires, decision-making, and experiences of older adults, clinicians, and family caregivers is crucial for improving care experiences and clinical outcomes.  

MCL members involved: Corey Abramson, Alissa Bernstein Sideman, Dan Dohan, Liz Dzeng, Krista Harrison, Toby Haeusermann

Example projects 

  • DISCERN-MC

  • LEARN-MC


Example publications

  • Dressler, Gabrielle, Sarah Garrett, Lauren Hunt, Nicole Thompson, Katherine Mahoney, Rebecca Sudore, Christine Ritchie, and Krista Harrison. "Hospice employee perspectives on CPR and" Aggressive Care” for the Dying: Communication Practices and Ethical Dilemmas in Hospice (GP742)." Journal of Pain and Symptom Management 60, no. 1 (2020): 270-271.

  • Dohan, Daniel, Marie Murphy, Lisa M. Lowenstein, George Chang, and Emily Finlayson. "Addressing Practice Culture to Improve Surgical Care for Frail Elders." In 2018 IG Pre-Conference Sessions. AcademyHealth, 2018.

  • Abramson, Corey M. 2015. The End Game: How Inequality Shapes Our Final Years. Cambridge, MA: Harvard University Press. (link)

  • Abramson, Corey M. 2016. “Unequal Aging: Lessons from Inequality’s End Game.” Public Policy and Aging Report (The Gerontologist) 26 (2): 68-72.  

  • Abramson, Corey M. and Martín Sánchez-Jankowski. 2012. “Racial Differences in Patterns of Having and Using a Doctor Among the Elderly Poor in The United States.” Research in Social Stratification and Mobility 30: 203–217.  

  • Abramson, Corey M. 2009. “Who Are the Clients?: Goal Displacement in an Adult Day Care Center for Elders with Dementia.” International Journal of Aging and Human Development 68:65-92.  

 

NEXT GENERATION QUALITATIVE AND MIXED METHODS

In social science and health policy the term “qualitative research” is used to refer to various forms of rigorous inquiry that do not rely on numerical reduction or lab experiments. Commonly used qualitative methods include (but are not limited to): participant observation, in-depth interviews, ethnography, focus groups and content analysis. “Mixed-methods” research combines the insights provided by in-depth qualitative inquiry with other forms of data or analysis in a single study. Most typically this involves the use of multiple qualitative methods (e.g. interviews and participant observation), triangulation with quantitative data (e.g. surveys or administrative data), or “quantitative” and/or computational analytical techniques applied to texts  (e.g. computational ethnography). The term “nextgen” refers to approaches that leverage the existence of new technologies to scale, analyze and represent data from large team based projects that diverge from the traditional solo-researcher model of qualitative research in both scope (i.e. nextgen projects are larger and comparative) and aims ( i.e. nextgen projects are concerned with minimizing error, generalization, and replicability).


MCL members involved include Corey Abramson, Dan Dohan, Sarah Garrett, Chris Koenig, Kate Rendle

Example projects

  • DISCERN-MC

Example publications

  • Abramson, Corey M. and Neil Gong. 2020. Beyond the Case: The Logics and Practices of Comparative Ethnography. New York, NY: Oxford University Press. 

  • Bernstein A, Dohan D. Using Computational Tools to Enhance Comparative Ethnography: Lessons from Scaling Ethnography for Biomedicine.In Beyond the Case: Competing Logics and Practices of Comparative Ethnography (ed. Abrams and Gong). 2020. New York, NY: Oxford University 

  • Abramson, Corey M. and Daniel Dohan. 2015. “Beyond Text: Using Arrays to Represent and Analyze Ethnographic Data.” Sociological Methodology 45: 272-319. 

  • Abramson, Corey M., Jacqueline Joslyn, Sarah B. Garrett, Katharine Rendle, and Daniel Dohan. 2018. “The Promises of Computational Ethnography: Improving Transparency, Replicability, and Validity for Realist Approaches to Ethnographic Analysis.” Ethnography. 19(2): 254-284  

  • Dohan, Daniel, Sarah B. Garrett, Katharine A. Rendle, Meghan Halley, and Corey Abramson. "The importance of integrating narrative into health care decision making." Health Affairs 35, no. 4 (2016): 720-725. 

  • Rendle, Katharine A, Corey M Abramson, Sarah B Garrett, Meghan C Halley, and Daniel Dohan, ‘Beyond Exploratory: A Tailored Framework for Designing and Assessing Qualitative Health Research’, BMJ Open, 9.8 (2019)  

  • Fine, Gary Alan and Corey M. Abramson. July 2020 “Ethnography in the Time of COVID-19: Vectors and the Vulnerable.” Etnografia e Ricerca Qualitativa  

  • Abramson, Corey M. 2020 Forthcoming. “Ethnographic Methods for Research on Aging: Past Contributions and Future Possibilities.” Handbook of Aging and the Social Sciences (9th edition). New York: Elsevier

  • Koenig CJ, Wenger M, Graham GD, Asch S, Rongey C. (2019) “Managing professional knowledge boundaries during SCAN-ECHO teleconsultations in two Veterans’ Affairs’ specialty care liver clinics: A theme-oriented Discourse Analysis.” Journal of Telemedicine and Telecare. 25(3): 181-189

  • Koenig CJ, Wenger M, Graham GD, Asch S, Rongey C. (2016). “Describing the ‘learning loop’: An overall structural organization of video consultations between specialist and generalist providers for specialty care liver problems.” Journal of Testing, Psychometrics, Methodology in Applied Psychology. 23(4): 429-451.

 

MATERNITY CARE

Maternal health outcomes in the US, and the stark racial and ethnic disparities within them, are the subject of increasing public concern. US birthing people face higher rates of maternal morbidity and mortality than their counterparts in other industrialized nations. Black and Indigenous birthing people in the US die at rates far higher than their non-Hispanic white counterparts and are more likely to report disrespectful perinatal care. Our goals focus on investigating: (A) mechanisms underlying the associations between demographic characteristics and maternal mortality and morbidity, focusing in particular on the role of medical culture, racism, and implicit bias within health systems; (B) targets for interventions to improve maternity care quality and individuals’ experiences of it; (C) the implementation, acceptability and effects of implicit bias training among perinatal care providers; and (D) the role of networks and culture in pregnant individuals’ navigation of perinatal care.


MCL members involved in this work: Sarah Garrett


Example projects: 


Garrett SB, Hooper S. “Multi-stakeholder Engagement with State Policies to Advance Antiracism in Maternal Health (MEND).” (Proposal under review)


Example publications:


Garrett, Sarah B. "Foundations of the cultural repertoire: Education and social network effects among expectant mothers." Poetics 55 (2016): 19-35.

 

NEUROETHICS

Over the past decade, we have witnessed considerable advances in new technologies that modulate brain function. They hold a tremendous potential for alleviating the burden of neuropsychiatric illness, spanning across multiple clinical indications such as epilepsy as well as movement and psychiatric disorders. Besides therapeutic applications, these technologies may also yield unprecedented insight into the nature and workings of the mind. While opening new doors, however, these developments raise a host of ethical questions about who we are and how the relationship between the person, their brain, and a new technology may affect the human condition. To answer them, we will require collaboration across humanistic and scientific disciplines as well as the engagement of patients and researchers at the forefront of novel neurotechnologies. In partnership with the UCSF Decision Lab, we are observing and interviewing patients undergoing novel closed-loop interventions for various neurological disorders, along with their family members. We are also studying how their experiences and concerns can be incorporated in clinicians’ and researchers’ views about the ethical development of neurotechnology.


MCL members working in this area include Tobias Haeusermann and Dan Dohan.

Example project:

  • Neurotech Study

 

PRIMARY CARE

Primary care is at the forefront of healthcare delivery. It is the site of health maintenance and prevention, and it serves as the bridge between communities and specialty care. Primary care is the social location where disease and illness are first professionally recognized. However, primary care is a diverse area of research and practice that encompasses various medical specialties and expertises. Because primary care is often the first place people use to seek professional medical help, there is an urgent and ongoing need to engage in and study general clinical settings to understand their diverse cultures, challenges, and conceptualization of care across the illness spectrum. Medical Culture Lab members study the challenges of primary care, particularly around integration of new tools and practices to engage primary care providers in dementia evaluation and care management, studying the communication between neurology specialists and primary care providers, the role of primary care in reproductive health, the need to address health disparities, health communication, value based care, and how to integrate social determinants into clinical care delivery.  


MCL members involved in this work: Na’amah Razon, Alissa Bernstein Sideman, Chris Koenig, Corey Abramson


Example Projects

  • Gauging patient understanding in primary care visits (Chris Koenig)

  • Talking about Complementary and Integrative Health (CIH) with primary care biomedical providers (Chris Koenig)


Example publications

  • Bernstein A, Rogers KM, Possin KL, Steele NZR, Ritchie CS, Kramer JH, Geschwind M, Higgins JJ, Wohlgemuth J, Pesano R, Miller BL, Rankin KP. Dementia assessment and management in primary care settings: a survey of current provider practices in the United States. BMC Health Serv Res. 2019 Nov 29; 19(1):919. PMID: 31783848.

  • Bernstein A, Rogers KM, Possin KL, Steele NZR, Ritchie CS, Miller BL, Rankin KP. Primary Care Provider Attitudes and Practices Evaluating and Managing Patients with Neurocognitive Disorders. J Gen Intern Med. 2019 09; 34(9):1691-1692. PMID: 31044411.

  • Koenig CJ, Wingard L, Sabee CM, Foster J, Chivers N, Olsher D, Vandergriff I. (2014). “Managing Patient-centered Communication across the Type 2 Diabetes Illness Trajectory: A Grounded Practical Theory of Interactional Sensitivity.” Journal of Applied Communication Research. 42(3): 244-267.

  • Koenig, CJ. (2011). “Negotiating patient agency in treatment recommendations with adults in primary care visits.” Social Science and Medicine, 72: 1105-1114.

 

SOCIAL DETERMINANTS OF HEALTH

There is increasing recognition of the way social environment and context influences health and illness.This includes, but is not limited to how food, transportation, housing, and education shape individuals’ experience of health and disease and the culture of medicine.  The interrogation of how social context influences health also extends to the implementation of health policy and the legacies of racism in shaping medicine.  Medical Culture Lab participants study the concept of social determinants of health, and how to operationalize this concept in clinical research and delivery.  There is particular interest in studying how social determinants are integrated into clinical guidelines, the ethics of clinical decision based on social context, and design of transportation and mobility interventions. 


MCL members involved in this work: include Na’amah Razon, Chris Koenig, Corey Abramson, Toby Haeusermann 


Example publications:

  • Gottlieb L, Razon N, & Aboelata N. How do Community Health Centers Pay for Social Care Programs? San Francisco, CA: SIREN; 2019: Available at: https://sirenetwork.ucsf.edu/tools-resources/resources/how-do-safety-net....

  • Bernstein, A., and Razon N. 2019. “Anthropological Perspectives to Health Policy.” Human Organization. 78(1): 75-84. 

  • Haeusermann, Tobias, Marta Fadda, Alessandro Blasimme, Bastian Greshake Tzovaras, and Effy Vayena. "Genes wide open: Data sharing and the social gradient of genomic privacy." AJOB Empirical Bioethics 9, no. 4 (2018): 207-221.

  • Razon, N. 2017. “Seeing and unseeing like a state: house demolitions, healthcare, and the politics of invisibility in southern Israel.” Anthropological Quarterly. 90(1): 55-82.  

  • Cheney A, Koenig CJ, Miller CJ, Wright P, Zamora KA, Wright P, Stanley R, Fortney J, Pyne JM. (2018). “Veteran-Centered Barriers to Veterans Affairs Mental Healthcare Services Use.” BMC Health Services Research. 18(1): 591-605 

  • Abramson, Corey M. 2015. The End Game: How Inequality Shapes Our Final Years. Cambridge, MA: Harvard University Press. (link

  • Abramson, Corey M. and Elena Portacolone. 2017. “What is New with Old?: “What the Aging Population Teaches Us About American Inequality.” Sociology Compass. 11(3)

  • Abramson, Corey M., Martín Sánchez-Jankowski and Manata HashemiΔ . 2015. “Perceived Discrimination in U.S. Healthcare: Charting the Effects of Key Social Characteristics Within and Across Racial Groups.” Preventive Medicine Reports 2:615-621. 

  • Abramson, Corey M. and Martín Sánchez-Jankowski. 2012. “Racial Differences in Patterns of Having and Using a Doctor Among the Elderly Poor in The United States.” Research in Social Stratification and Mobility 30: 203–217.  

 

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