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1.
Health Policy ; 142: 105013, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38401332

ABSTRACT

Stakeholder participation is a key component of a fair and equitable priority-setting in health. The COVID-19 pandemic highlighted the need for fair and equitable priority setting, and hence, stakeholder participation. To date, there is limited literature on stakeholder participation in the development of the pandemic plans (including the priority setting plans) that were rapidly developed during the pandemic. Drawing on a global study of national COVID-19 preparedness and response plans, we present a secondary analysis of COVID-19 national plans from 70 countries from the six WHO regions, focusing on stakeholder participation. We found that most plans were prepared by the Ministry of Health and acknowledged WHO guidance, however less than half mentioned that additional stakeholders were involved. Few plans described a strategy for stakeholder participation and/or accounted for public participation in the plan preparation. However, diverse stakeholders (including multiple governmental, non-governmental, and international organizations) were proposed to participate in the implementation of the plans. Overall, there was a lack of transparency about who participated in decision-making and limited evidence of meaningful participation of the community, including marginalized groups. The critical relevance of stakeholder participation in priority setting requires that governments develop strategies for meaningful participation of diverse stakeholders during pandemics such as COVID-19, and in routine healthcare priority setting.


Subject(s)
COVID-19 , Stakeholder Participation , Humans , Pandemics , Pandemic Preparedness , Delivery of Health Care
2.
Health Policy ; 141: 104998, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38295675

ABSTRACT

The COVID-19 pandemic has forced governments across the world to consider how to prioritise the allocation of scarce resources. There are many tools and frameworks that have been designed to assist with the challenges of priority setting in health care. The purpose of this study was to examine the extent to which formal priority setting was evident in the pandemic plans produced by countries in the World Health Organisation's EURO region, during the first wave of the COVID-19 pandemic. This compliments analysis of similar plans produced in other regions of the world. Twenty four pandemic preparedness plans were obtained that had been published between March and September 2020. For data extraction, we applied a framework for identifying and assessing the elements of good priority setting to each plan, before conducting comparative analysis across the sample. Our findings suggest that while some pre-requisites for effective priority setting were present in many cases - including political commitment and a recognition of the need for allocation decisions - many other hallmarks were less evident, such as explicit ethical criteria, decision making frameworks, and engagement processes. This study provides a unique insight into the role of priority setting in the European response to the onset of the COVID-19 pandemic.


Subject(s)
COVID-19 , Influenza, Human , Humans , Pandemic Preparedness , Health Priorities , Pandemics , Document Analysis , Influenza, Human/epidemiology
3.
Hastings Cent Rep ; 53 Suppl 2: S53-S59, 2023 Sep.
Article in English | MEDLINE | ID: mdl-37963048

ABSTRACT

Health care and public health programs increasingly rely on, and often even require, organizational action, which is facilitated, if not dependent on, trust. Case examples in this essay highlight trust, trustworthiness, and distrust in public and private organizations, providing insights into how trust in health-related organizations can be betrayed, earned, and justified and into the consequences of organizational trust and trustworthiness for the health of individuals and communities. These examples demonstrate the need for holistic assessments of trust in clinicians and trust in organizations and for organizations, public health, and the medical profession to address questions concerning their own trustworthiness. Normative and empirical assessments of trust and trustworthiness that capture the experiences of those treated within the walls of a health care organization, as well as the care of those outside, will contribute to more trustworthy systems of care.


Subject(s)
Trust , Humans
4.
Health Expect ; 26(6): 2245-2251, 2023 12.
Article in English | MEDLINE | ID: mdl-37452517

ABSTRACT

BACKGROUND: Trust and distrust have shaped health behaviour during the COVID-19 pandemic. Since the start of the pandemic, misinformation and polarization eroded trust across the United States. In states like Michigan, pandemic restrictions led to significant unrest. Michiganders also faced disproportionate morbidity and mortality from COVID-19 during this period. OBJECTIVE: The objective of this qualitative study was to understand the individual experiences of trust in low-income Michiganders during the early COVID-19 pandemic. PARTICIPANTS: Twenty-four participants at or below 200% of the federal poverty line who resided in Michigan were recruited for this study. APPROACH: Interviews were conducted during the winter of 2020 using a formal interview guide that addressed sources of information, perceptions of risk and exposure, protective behaviours and impacts of the pandemic at home, work and in receiving healthcare. RESULTS: Thematic analysis showed that themes of trust and distrust emerged in multiple facets of our participants' experiences, including in the context of information sources, the behaviours of others, health, financial security, employment and overall safety. Trust and distrust in low-income communities often stemmed from significant financial and economic vulnerabilities and instability in access to healthcare that was exacerbated in the pandemic. Furthermore, participant trust was shaped by internal (e.g., relationships with others) and external (e.g., source of information, social inequity) factors that influenced their perceptions and experiences during the pandemic. CONCLUSION: Trust has played an important role in many aspects of the experiences of low-income communities during the COVID-19 pandemic. This is important for clinicians to consider as COVID-19 becomes endemic, and trust continues to impact patients' approaches to vaccines, testing and treatment options. PATIENT OR PUBLIC CONTRIBUTION: This study was designed and conducted with the assistance and input of the members of the DECIDERS Steering Committee, a diverse statewide network of community members in Michigan. The DECIDERS team allows community members to have a voice in the design and conduct of health research, and collaborates with researchers to improve health across the state of Michigan.


Subject(s)
COVID-19 , Trust , Humans , Michigan/epidemiology , Pandemics , COVID-19/epidemiology , Poverty
5.
J Gen Intern Med ; 38(11): 2568-2576, 2023 08.
Article in English | MEDLINE | ID: mdl-37254008

ABSTRACT

BACKGROUND: Inter-hospital patient transfers to hospitals with greater resource availability and expertise may improve clinical outcomes. However, there is little guidance regarding how patient transfer requests should be prioritized when hospital resources become scarce. OBJECTIVE: To understand the experiences of healthcare workers involved in the process of accepting inter-hospital patient transfers during a pandemic surge and determine factors impacting inter-hospital patient transfer decision-making. DESIGN: We conducted a qualitative study consisting of semi-structured interviews between October 2021 and February 2022. PARTICIPANTS: Eligible participants were physicians, nurses, and non-clinician administrators involved in the process of accepting inter-hospital patient transfers. Participants were recruited using maximum variation sampling. APPROACH: Semi-structured interviews were conducted with healthcare workers across Michigan. KEY RESULTS: Twenty-one participants from 15 hospitals were interviewed (45.5% of eligible hospitals). About half (52.4%) of participants were physicians, 38.1% were nurses, and 9.5% were non-clinician administrators. Three domains of themes impacting patient transfer decision-making emerged: decision-maker, patient, and environmental factors. Decision-makers described a lack of guidance for transfer decision-making. Patient factors included severity of illness, predicted chance of survival, need for specialized care, and patient preferences for medical care. Decision-making occurred within the context of environmental factors including scarce resources at accepting and requesting hospitals, organizational changes to transfer processes, and alternatives to patient transfer including use of virtual care. Participants described substantial moral distress related to transfer triaging. CONCLUSIONS: A lack of guidance in transfer processes may result in considerable variation in the patients who are accepted for inter-hospital transfer and in substantial moral distress among decision-makers involved in the transfer process. Our findings identify potential organizational changes to improve the inter-hospital transfer process and alleviate the moral distress experienced by decision-makers.


Subject(s)
COVID-19 , Patient Transfer , Resource Allocation , Humans , Pandemics , Decision Making , Qualitative Research
6.
Health Policy Open ; 3: 100084, 2022 Dec.
Article in English | MEDLINE | ID: mdl-36415539

ABSTRACT

Background: The COVID-19 pandemic has significantly disrupted health systems and exacerbated pre-existing resource gaps in the Eastern Mediterranean Region (WHO-EMRO). Active humanitarian and refugee crises have led to mass population displacement and increased health system fragility, which has implication for equitable priority setting (PS). We examine whether and how PS was included in national COVID-19 pandemic plans within EMRO. Methods: An analysis of COVID-19 pandemic response and preparedness planning documents from a sample of 12/22 countries in WHO-EMRO. We assessed the degree to which documented PS processes adhere to twenty established quality parameters of effective PS. Results: While all reviewed plans addressed some aspect of PS, none included all quality parameters. Yemen's plan included the highest number (9) of quality parameters, while Egypt's addressed the lowest (3). Most plans used evidence in their planning processes. While no plans explicitly identify equity as a criterion to guide PS; many identified vulnerable populations - a key component of equitable PS. Despite high concentrations of refugees, migrants, and IDPs in EMRO, only a quarter of the plans identified them as vulnerable. Conclusion: PS setting challenges are exacerbated by conflict and the resulting health system fragmentation. Systematic and quality PS is essential to tackle long-term health implications of COVID-19 for vulnerable populations in this region, and to support effective PS and equitable resource allocation.

7.
Health Policy Open ; 3: 100086, 2022 Dec.
Article in English | MEDLINE | ID: mdl-36447637

ABSTRACT

Background: The World Health Organization- South-East Asia Region (WHO-SEARO) accounted for almost 17% of all the confirmed cases and deaths of COVID-19 worldwide. While the literature has documented a weak COVID-19 response in the WHO-SEARO, there has been no discussion of the degree to which this could have been influenced/ mitigated with the integration of priority setting (PS) in the region's COVID-19 response. The purpose of this paper is to describe the degree to which the COVID-19 plans from a sample of WHO-SEARO countries included priority setting. Methods: The study was based on an analysis of national COVID-19 pandemic response and preparedness planning documents from a sample of seven (of the eleven) countries in WHO-SEARO. We described the degree to which the documented priority setting processes adhered to twenty established quality indicators of effective PS and conducted a cross-country comparison. Results: All of the reviewed plans described the required resources during the COVID-19 pandemic. Most, but not all of the plans demonstrated political will, and described stakeholder involvement. However, none of the plans presented a clear description of the PS process including a formal PS framework, and PS criteria. Overall, most of the plans included only a limited number of quality indicators for effective PS. Discussion and conclusion: There was wide variation in the parameters of effective PS in the reviewed plans. However, there were no systematic variations between the parameters presented in the plans and the country's economic, health system and pandemic and PS context and experiences. The political nature of the pandemic, and its high resource demands could have influenced the inclusion of the parameters that were apparent in all the plans. The finding that the plans did not include most of the evidence-based parameters of effective PS highlights the need for further research on how countries operationalize priority setting in their respective contexts as well as deeper understanding of the parameters that are deemed relevant. Further research should explore and describe the experiences of implementing defined priorities and the impact of this decision-making on the pandemic outcomes in each country.

8.
Epidemiol Rev ; 44(1): 78-86, 2022 12 21.
Article in English | MEDLINE | ID: mdl-36124656

ABSTRACT

The COVID-19 pandemic revealed weaknesses in the public health infrastructure of the United States, including persistent barriers to engaging marginalized communities toward inclusion in clinical research, including trials. Inclusive participation in clinical trials is crucial for promoting vaccine confidence, public trust, and addressing disparate health outcomes. A long-standing body of literature describes the value of community-based participatory research in increasing marginalized community participation in research. Community-based participatory research emphasizes shared leadership with community members in all phases of the research process, including in the planning and implementation, interpretation, and dissemination. Shared leadership between academic and industry with marginalized communities can assist with inclusive participation in vaccine trials and increase public trust in the development of the vaccines and other therapies used during public emergencies. Nevertheless, epidemiologic and clinical research do not yet have a strong culture of community partnership in the scientific process, which takes time to build and therefore may be difficult to develop and rapidly scale to respond to the pandemic. We outline practices that contribute to a lack of inclusive participation and suggest steps that trialists and other researchers can take to increase marginalized communities' participation in research. Practices include planning for community engagement during the planning and recruitment phases, having regular dialogues with communities about their priorities, supporting them throughout a study, and navigating complex structural determinants of health. Additionally, we discuss how research institutions can support inclusive practices by reexamining their policies to increase participation in clinical trials and instilling institutional trustworthiness.


Subject(s)
COVID-19 , Pandemics , Humans , United States , Pandemics/prevention & control , COVID-19/prevention & control , Community Participation , Community-Based Participatory Research , Public Health
9.
BMC Health Serv Res ; 22(1): 233, 2022 Feb 19.
Article in English | MEDLINE | ID: mdl-35183170

ABSTRACT

BACKGROUND: Medicaid community engagement requirements previously received federal approval in 12 states, despite limited data on their impact on enrollees' employment-related activities. Our objective was to assess longitudinal changes in enrollees' employment and student status after implementation of Michigan's Medicaid expansion. METHODS: Longitudinal telephone survey of Michigan Medicaid expansion enrollees in 2016 (response rate [RR] = 53.7%), 2017 (RR = 83.4%), and 2018 (N = 2,608, RR = 89.4%) serially assessing self-reported employment or student status. Survey responses were benchmarked against statewide changes in assessed similar low-income adults in the U.S. Census Bureau Current Population Survey. We used mixed models with individual random effects to assess changes in the proportion of enrollees who were employed or students by year. RESULTS: Most respondents had incomes < 100% FPL (61.7% with 0-35% of the federal poverty level [FPL], 22.9% with 36-99% FPL, and 15.4% with 100-133% FPL), 89.3% had at least a high school diploma/equivalent, and they ranged in age (39.6% age 19-34, 34.5% age 35-50, 25.9% age 51-64). Employment or student status increased significantly among Michigan Medicaid expansion respondents, from 54.5% in 2016 to 61.4% in 2018 (P < 0.001), including among those with a chronic condition (47.8% to 53.8%, P < 0.001) or mental health/substance use disorder (48.5% to 56.0%, P < 0.001). In contrast, the statewide proportion of low-income non-elderly adults who were employed or students did not change significantly (from 42.7% in 2016 to 46.0% in 2018, P = 0.57). CONCLUSIONS: Medicaid expansion, absent a community engagement requirement, was associated with increased employment and related activities. The role of Medicaid in providing safety-net coverage to individuals during times of economic stress is likely to grow.


Subject(s)
Employment , Medicaid , Adult , Health Services Accessibility , Humans , Insurance Coverage , Michigan/epidemiology , Middle Aged , Patient Protection and Affordable Care Act , Poverty , Students , United States/epidemiology , Young Adult
10.
J Public Health Dent ; 82(1): 11-21, 2022 01.
Article in English | MEDLINE | ID: mdl-33754344

ABSTRACT

OBJECTIVE: To investigate self-reported improved oral health and its mediators, and job-related outcomes, of Medicaid expansion beneficiaries in Michigan. METHODS: This cross-sectional mixed-methods study of adult "Healthy Michigan Plan" (HMP) Medicaid expansion beneficiaries included qualitative interviews with a convenience sample of 67 beneficiaries enrolled for ≥6 months, a stratified random sample survey of 4,090 beneficiaries enrolled for ≥12 months; and Medicaid claims data. We examined unadjusted associations between demographic variables and awareness of dental coverage, self-reported dental care access, dental visits, and self-reported oral health; and between improved oral health and job seeking and job performance. Multivariate analysis examined factors associated with self-reported oral health improvement, adjusting for sociodemographic characteristics, prior health insurance, and having at least one dental visit claim. RESULTS: Among surveyed beneficiaries, 60 percent received ≥1 dental visit and 40 percent reported improved oral health. Adjusted odds ratios (aOR) for improved oral health were higher for African-American beneficiaries [aOR = 1.61; confidence interval (CI) = 1.28-2.03] and those previously uninsured for ≥12 months (aOR = 1.96; CI = 1.58-2.43). Beneficiaries reporting improved oral health were more likely to report improved job seeking (59.9 percent vs 51 percent; P = 0.04) and job performance (76.1 percent vs 65.0 percent; P < 0.001) due to HMP. Interviewees described previously unmet oral health needs, and treatments that improved oral health, functioning, appearance, confidence, and employability. CONCLUSION: Michigan's Medicaid expansion contributed to self-reported improved oral health, which was associated with improved job outcomes. Policymakers should consider the importance of Medicaid dental coverage in reducing oral health disparities and improving the health and socioeconomic well-being of low-income adults and communities when considering this optional benefit.


Subject(s)
Medicaid , Oral Health , Adult , Cross-Sectional Studies , Health Services Accessibility , Humans , Michigan , United States
11.
Health Policy Plan ; 37(3): 297-309, 2022 Mar 04.
Article in English | MEDLINE | ID: mdl-34545395

ABSTRACT

Priority setting represents an even bigger challenge during public health emergencies than routine times. This is because such emergencies compete with routine programmes for the available health resources, strain health systems and shift health-care attention and resources towards containing the spread of the epidemic and treating those that fall seriously ill. This paper is part of a larger global study, the aim of which is to evaluate the degree to which national COVID-19 preparedness and response plans incorporated priority setting concepts. It provides important insights into what and how priority decisions were made in the context of a pandemic. Specifically, with a focus on a sample of 18 African countries' pandemic plans, the paper aims to: (1) explore the degree to which the documented priority setting processes adhere to established quality indicators of effective priority setting and (2) examine if there is a relationship between the number of quality indicators present in the pandemic plans and the country's economic context, health system and prior experiences with disease outbreaks. All the reviewed plans contained some aspects of expected priority setting processes but none of the national plans addressed all quality parameters. Most of the parameters were mentioned by less than 10 of the 18 country plans reviewed, and several plans identified one or two aspects of fair priority setting processes. Very few plans identified equity as a criterion for priority setting. Since the parameters are relevant to the quality of priority setting that is implemented during public health emergencies and most of the countries have pre-existing pandemic plans; it would be advisable that, for the future (if not already happening), countries consider priority setting as a critical part of their routine health emergency and disease outbreak plans. Such an approach would ensure that priority setting is integral to pandemic planning, response and recovery.


Subject(s)
COVID-19 , Influenza, Human , COVID-19/epidemiology , Disease Outbreaks , Humans , Influenza, Human/epidemiology , Pandemics , SARS-CoV-2
12.
JCO Oncol Pract ; 18(1): e89-e97, 2022 01.
Article in English | MEDLINE | ID: mdl-34324387

ABSTRACT

PURPOSE: The COVID-19 pandemic has created a new set of problems for clinicians. This study examines the experiences of oncologists providing care to seriously ill persons near the end of life in the context of the COVID-19 pandemic. METHODS: Between January 2020 and August 2020, we conducted semistructured, in-depth individual interviews with 22 purposefully sampled oncologists from practices enrolled in the Michigan Oncology Quality Consortium. Deidentified transcripts of the interviews were examined using thematic analysis. RESULTS: Our respondents described several novel problems created by the COVID-19 pandemic, including: (1) ethical challenges, (2) the need to manage uncertainty-physically and emotionally-on the part of both patients and oncologists, and (3) the difficulty of integrating technology and communication for seriously ill persons. These problems were made more complex by features of the pandemic: resource scarcity (and the need to fairly allocate poor resources), delays in care, high levels of fear, and the increased importance of advance care planning. Nonabandonment served as a way to cope with increased stress, and the use of telemedicine became an increasingly important medium of communication. CONCLUSION: This study offers an in-depth exploration of the problems faced by oncologists as a result of the COVID-19 pandemic and how they navigated them. Optimal decision making for seriously ill persons with cancer during the COVID-19 pandemic must include open acknowledgment of the ethical challenges involved, the emotions experienced by both patients and their oncologists, and the urgent need to integrate technology with compassionate communication in determining patient preferences.


Subject(s)
COVID-19 , Oncologists , Communication , Empathy , Humans , Pandemics , Prognosis , SARS-CoV-2
13.
Health Expect ; 25(2): 697-711, 2022 04.
Article in English | MEDLINE | ID: mdl-34953028

ABSTRACT

INTRODUCTION: Engaging with patients about their lived experience of health and illness and their experience within the healthcare system can help inform the provision of care, health policies and health research. In the context of health research, however, operationalizing the levels of patient engagement is not straightforward. We suggest that a key challenge to the routine inclusion of patients as partners in health research is a lack of tangible guidance regarding how this can be accomplished. METHODS: In this article, we provide guidance on how to codesign and operationalize a concrete patient engagement plan for any health research project. RESULTS: We illustrate a seven-step approach using the example of a national clinical trial in Canada and provide a patient engagement planning template for use in any health research project. CONCLUSION: Such concrete guidance should improve the design and reporting of patient engagement in health research. PATIENT OR PUBLIC CONTRIBUTION: The De-Implementing Wisely Research group is informed by a national 9-member patient partner council (PPC). The research team includes three lead patient partners who are coinvestigators on the grant that funds the program of research. Members of the council advise on all aspects of the study design and implementation. The ideas presented in this paper were informed by regular communication and planning with the PPC; specific contributions of lead patient partner authors are outlined as follows: Brian Johnston, Susan Goold and Vanessa Francis are patient partners with a wide breadth of experience in the healthcare system and health research projects. The guidance in this article draws on their lived and professional expertise. All patient partner authors contributed to the planning of the manuscript, participated in meetings to develop content and provided critical manuscript edits and comments on drafts.


Subject(s)
Communication , Patient Participation , Canada , Clinical Trials as Topic , Humans
14.
J Clin Transl Sci ; 6(1): e136, 2022.
Article in English | MEDLINE | ID: mdl-36590362

ABSTRACT

Introduction: The COVID-19 pandemic accelerated a trend for clinical and translational community-engaged research in adapting to an increasingly virtual landscape. This requires a framework for engagement distinct from in-person research and program activities. We reflect on four case studies of community engagement activities that inform a conceptual framework to better integrate the virtual format into community-engaged research reflecting key tenets of health equity and antiracist praxis. Methods: Four projects were selected by community-engaged research stakeholders for an in-depth review based on how much the virtual transition impacted activities such as planning, recruitment, and data collection for each project. Transitions to virtual engagement were assessed across ten areas in which community engagement has been demonstrated to make a positive impact. Results: Our analysis suggests a conceptual evaluation framework in which the ten community engagement areas cluster into four interrelated domains: (1) development, design, and delivery; (2) partnership and trust building; (3) implementation and change; and (4) ethics and equity. Conclusions: The domains in this conceptual framework describe critical elements of community engaged research and programs consistent with recommendations for health equity informed meaningful community engagement from the National Academy of Medicine. The conceptual framework and case studies can be used for evaluation and to develop guidelines for clinical and translational researchers utilizing the virtual format in community-engaged research.

15.
Health Aff (Millwood) ; 40(10): 1637-1643, 2021 10.
Article in English | MEDLINE | ID: mdl-34606344

ABSTRACT

Addressing health inequities for racial and ethnic minority populations is challenging. After passage of the Affordable Care Act, Michigan launched its Healthy Michigan Plan, which expanded Medicaid eligibility in the state. Our evaluation of the expansion provided the opportunity to study its impact on racial and ethnic minority groups, including Arab American and Chaldean American enrollees, an understudied population. Using data from telephone surveys collected in 2016, 2017, and 2018, we conducted an analysis to study the plan's impact on access to a regular source of care and health status among racial and ethnic minority groups. More than 90 percent of respondents of all racial and ethnic groups reported having a regular source of care after plan enrollment compared with 74.4 percent before enrollment. Respondents who identified as non-Hispanic White, African American, and Hispanic reported improvements in health status after plan enrollment. Our study demonstrates the potential of health insurance access to narrow health inequities between racial and ethnic groups.


Subject(s)
Ethnicity , Medicaid , Health Services Accessibility , Health Status , Humans , Michigan , Minority Groups , Patient Protection and Affordable Care Act , Self Report , United States
16.
JCO Oncol Pract ; 17(10): e1603-e1613, 2021 10.
Article in English | MEDLINE | ID: mdl-34255545

ABSTRACT

PURPOSE: Since Affordable Care Act (ACA) implementation in 2014, studies have demonstrated gains in insurance coverage for cancer survivors < 65 years. We assessed the impact of ACA implementation on financial barriers to care by stratifying survivors at age 65 years, when individuals typically become Medicare-eligible. METHODS: We used data from respondents with cancer in the 2009-2018 National Health Interview Survey. We identified 21,954 respondents representing approximately 7.4 million survivors, who were then age-stratified at age 65 years. Survey responses regarding financial barriers to medical care and medications were analyzed, and age-stratified multivariable logistic regression modeling was performed, which evaluated the impact of ACA implementation on these measures, adjusted for demographic and socioeconomic variables. RESULTS: After multivariable logistic regression, ACA implementation was associated with higher adjusted odds of Medicaid insurance (odds ratio [95% CI] 2.02 [1.72 to 2.36]; P < .0001) and lower adjusted odds of no insurance (0.57 [0.48 to 0.68]; P < .0001). Regarding financial barriers, ACA implementation was associated with lower adjusted odds of inability to afford medications (0.68 [0.59 to 0.79]; P < .0001), inability to afford dental care (0.83 [0.73 to 0.94]; P = .004), and delaying care (0.78 [0.69 to 0.89]; P = .002) in the 18-64 years group. Similarly, ACA implementation was associated with lower adjusted odds of secondary outcomes such as delaying refills, skipping doses, and anxiety over medical bills. Similar associations were not seen in the > 65 years group. CONCLUSION: Survivor-reported measures of financial barriers in cancer survivors age 18-64 years significantly improved following ACA implementation. Similar changes were not seen in the Medicare-eligible cohort, likely because of high Medicare enrollment and few uninsured.


Subject(s)
Cancer Survivors , Neoplasms , Adolescent , Adult , Aged , Health Services Accessibility , Humans , Insurance, Health , Medicare , Middle Aged , Neoplasms/therapy , Patient Protection and Affordable Care Act , United States , Young Adult
17.
JCO Oncol Pract ; 17(10): e1413-e1423, 2021 10.
Article in English | MEDLINE | ID: mdl-34251880

ABSTRACT

PURPOSE: Financial toxicity from cancer treatment is a growing concern. Its impact on patients requires refining our understanding of this phenomenon. We sought to characterize patients' experiences of financial toxicity in the context of an established framework to identify knowledge gaps and strategies for mitigation. METHODS: Semistructured interviews with patients with breast cancer who received financial aid from a philanthropic organization during treatment were conducted from February to May 2020. Interviews were transcribed and coded until thematic saturation was reached, and findings were contextualized within an existing financial toxicity framework. RESULTS: Thirty-two patients were interviewed, of whom 58% were non-Hispanic White. The mean age was 46 years. Diagnoses ranged from ductal carcinoma in situ to metastatic breast cancer. Concordant with an established framework, we found that direct and indirect costs determined objective financial burden and subjective financial distress stemmed from psychosocial, behavioral, and material impact of diagnosis and treatment. We identified expectations as a novel theme affecting financial toxicity. We identified knowledge gaps in treatment expectations, provider conversations, identification of resources, and support-finding and offer strategies for mitigating financial toxicity on the basis of participant responses, such as leveraging support from decision aids and allied providers. CONCLUSION: This qualitative study confirms an existing framework for understanding financial toxicity and identifies treatment expectations as a novel theme affecting both objective financial burden and subjective financial distress. Four knowledge gaps are identified, and strategies for mitigating financial toxicity are offered. Mitigating patients' financial toxicity is an important unmet need in optimizing cancer treatment.


Subject(s)
Breast Neoplasms , Communication , Female , Humans , Middle Aged , Qualitative Research
18.
PLoS One ; 16(4): e0243870, 2021.
Article in English | MEDLINE | ID: mdl-33891609

ABSTRACT

Drug shortages frequently and persistently affect healthcare institutions, posing formidable financial, logistical, and ethical challenges. Despite plentiful evidence characterizing the impact of drug shortages, there is a remarkable dearth of data describing current shortage management practices. Hospitals within the same state or region may not only take different approaches to shortages but may be unaware of shortages proximate facilities are facing. Our goal is to explore how hospitals in Michigan handle drug shortages to assess potential need for comprehensive drug shortage management resources. We conducted semi-structured interviews with diverse stakeholders throughout the state to describe experiences managing drug shortages, approaches to recent shortages, openness to inter-institutional engagement, ideas for a shared resource, and potential obstacles to implementation. To solicit additional feedback on ideas for a shared resource gathered from the interviews, we held focus groups with pharmacists, physicians, ethicists, and community representatives. Among participants representing a heterogeneous sample of institutions, three themes were consistent: (1) numerous drug shortage strategies occurring simultaneously; (2) inadequate resources and lead time to proactively manage shortages; and (3) interest in, but varied attitudes toward, a collaborative approach. These data provide insight to help develop and test a shared drug shortage management resource for enhancing fair allocation of scarce drugs. A shared resource may help institutions adopt accepted best practices and more efficiently access or share finite resources in times of shortage.


Subject(s)
Pharmaceutical Preparations/supply & distribution , Delivery of Health Care/statistics & numerical data , Evaluation Studies as Topic , Hospitals/statistics & numerical data , Humans , Intersectoral Collaboration , Michigan , Pharmacists/statistics & numerical data , Physicians/statistics & numerical data , Surveys and Questionnaires/statistics & numerical data
20.
Vaccines (Basel) ; 10(1)2021 Dec 28.
Article in English | MEDLINE | ID: mdl-35062697

ABSTRACT

Despite their disparate rates of infection and mortality, many communities of color report high levels of vaccine hesitancy. This paper describes racial differences in COVID-19 vaccine uptake in Detroit, and assesses, using a mediation model, how individuals' personal experiences with COVID-19 and trust in authorities mediate racial disparities in vaccination acceptance. The Detroit Metro Area Communities Study (DMACS) is a panel survey of a representative sample of Detroit residents. There were 1012 respondents in the October 2020 wave, of which 856 (83%) were followed up in June 2021. We model the impact of race and ethnicity on vaccination uptake using multivariable logistic regression, and report mediation through direct experiences with COVID as well as trust in government and in healthcare providers. Within Detroit, only 58% of Non-Hispanic (NH) Black residents were vaccinated, compared to 82% of Non-Hispanic white Detroiters, 50% of Hispanic Detroiters, and 52% of other racial/ethnic groups. Trust in healthcare providers and experiences with friends and family dying from COVID-19 varied significantly by race/ethnicity. The mediation analysis reveals that 23% of the differences in vaccine uptake by race could be eliminated if NH Black Detroiters were to have levels of trust in healthcare providers similar to those among NH white Detroiters. Our analyses suggest that efforts to improve relationships among healthcare providers and NH Black communities in Detroit are critical to overcoming local COVID-19 vaccine hesitancy. Increased study of and intervention in these communities is critical to building trust and managing widespread health crises.

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