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Haywood C.,Jr. | Haywood C.,The Johns Hopkins Berman Institute of Bioethics | Bediako S.,University of Maryland Baltimore County | Onojobi G.,Howard University | Beach M.C.,The Johns Hopkins Berman Institute of Bioethics
Journal of General Internal Medicine | Year: 2014

BACKGROUND: Adults with sickle cell disease (SCD) report experiencing discriminatory behavior from some healthcare providers. The impact of discrimination on health outcomes in SCD, including adherence to physician recommendations, is not known.OBJECTIVE: Our aim was to evaluate the association between perceived discrimination from healthcare providers and nonadherence to physician recommendations among persons with SCD, and to test the potentially mediating role of patient trust.PARTICIPANTS: Patients with SCD (age 15 years and older) participating in the Improving Patient Outcomes with Respect and Trust (IMPORT) Study.MAIN MEASURES: Perceived discrimination from healthcare providers and reported adherence to physician recommendations were assessed by patient self-report using items from the 2001 Commonwealth Fund Health Survey. Interpersonal trust in medical professionals was assessed using the short form of the Wake Forest Trust in Medical Professionals instrument.DESIGN: We used a cross-sectional analysis of IMPORT participant data. Multivariable Poisson regression models were used to test the independent association of discrimination with adherence and to test patient trust as a potential mediator.KEY RESULTS: Among 273 SCD patients with complete data on all variables of interest, patients reporting experiences of discrimination in the healthcare system were 53 % more likely to also report being nonadherent to physician recommendations. Trust in medical professionals appeared to mediate the discrimination/nonadherence relationship, accounting for 50 % of the excess prevalence of nonadherence among those experiencing discrimination.CONCLUSION: SCD patient perceptions of discriminatory experiences from healthcare providers are associated with greater nonadherence to physician recommendations, and may be a potential factor contributing to disparities in health and health quality among this patient population. Perceived discrimination appears to affect adherence behaviors through the pathway of patient trust. Improving relationships between healthcare providers and SCD patients may improve the trust that SCD patients have in medical professionals, which in turn may improve other outcomes among this underserved patient population. © 2014, Society of General Internal Medicine.


Pratt B.,The Johns Hopkins Berman Institute of Bioethics | Hyder A.A.,The Johns Hopkins Berman Institute of Bioethics
Journal of Law, Medicine and Ethics | Year: 2015

Scholarship focusing on how international research can contribute to justice in global health has primarily explored requirements for the conduct of clinical trials. Yet health systems research in low- and middle-income countries (LMICs) has increasingly been identified as vital to the reduction of health disparities between and within countries. This paper expands an existing ethical framework based on the health capability paradigm - research for health justice - to externally-funded health systems research in LMICs. It argues that a specific form of health systems research in LMICs is required if the enterprise is to advance global health equity. "Research for health justice" requirements for priority setting, research capacity strengthening, and post-study benefits in health systems research are derived in light of the field's distinctive characteristics. Specific obligations are established for external research actors, including governments, funders, sponsors, and investigators. How these framework requirements differ from those for international clinical research is discussed. © 2015 American Society of Law, Medicine & Ethics, Inc.


Haywood Jr. C.,The Johns Hopkins Berman Institute of Bioethics
Journal of Hospital Medicine | Year: 2011

Background: Although sickle cell disease (SCD) patients typically manage their pain at home, a small subgroup is frequently hospitalized and accounts for the majority of costs. Objectives: 1) To identify prospective diagnostic and demographic markers of new periods of high utilization; 2) To identify demographic and diagnostic markers of a persistent rather than moderating course of high utilization; 3) To replicate the finding that high utilization tends to moderate. Design: The State Inpatient Databases for California, 2004-2007, were used. Patients with new onset periods of high utilization were compared with non-high utilizers, and new high utilizers who moderated were compared with those who had a persistent course. Setting: All hospitals in the state of California. Patients: Patients age 13 years or older in 2004 with a recorded diagnosis of sickle cell disease and at least one hospitalization for crisis during the study period. Measures: Methods: Groups from hospitals throughout California were compared on demographics and discharge diagnoses of SCD complications and comorbidities. Patients age 13 years or older in 2004 with a recorded diagnosis of sickle cell disease and at least 1 hospitalization for crisis during the study period were included. Results: New periods of high utilization were associated with more prior hospitalizations and previous diagnoses of aseptic necrosis and renal disease. High utilization typically moderated. A persistent course was associated with slightly more hospitalizations during the initial year of high utilization, and, subsequently, by more mentions of septicemia and mood disorders. Conclusions: Overall, high utilization was difficult to predict, as was its course. The diagnoses most associated with high utilization indicated more severe sickle cell disease. Septicemia deserves further investigation as a preventable cause for high utilization, as do mood disorders. © 2010 Society of Hospital Medicine.


PubMed | Oregon Health And Science University, The Johns Hopkins Berman Institute Of Bioethics Electronic Address and The Johns Hopkins Berman Institute of Bioethics
Type: Journal Article | Journal: Journal of the National Medical Association | Year: 2016

A high level of evidence exists to suggest that negative attitudes held by clinicians toward persons with sickle cell disease serve as important barriers to the delivery of high quality care to this patient population. Little is known, though, about the characteristics of clinicians that may be predictive of these negative attitudes.During spring and summer 2009, we conducted a randomized controlled trial to test an intervention to improve clinician attitudes toward persons with sickle cell disease. Participating clinicians completed questionnaires regarding their demographic characteristics and their attitudes toward sickle cell patients. Principal clinician characteristics of interest included their race, professional discipline (nurse/physician), and the amount of their recent exposure to sickle cell patients in pain. Secondary analyses from this trial are presented here.Asian clinicians reported more negative attitudes towards these patients than did Black or White clinicians, nurses reported more negative attitudes than physicians, and clinicians with the greatest levels of recent exposure to sickle cell patients in pain reported more negative attitudes than did clinicians with lower levels of recent exposure.Our findings could facilitate the development of tailored educational resources needed to improve the quality of care delivered to persons with sickle cell disease, a national priority for sickle cell efforts.


News Article | October 31, 2016
Site: www.eurekalert.org

From HIV to Malaria to Ebola, health and medical research with human participants in Africa -- and the ethical evaluation of that research -- has long been conducted by non-African scholars, a circumstance that can present its own ethical challenges. For over a decade, the Fogarty International Center (FIC) at the US National Institutes of Health has funded programs to strengthen capacity among African professionals to provide high quality ethics review of research and conduct their own bioethics research and teaching, leading to significant gains across the continent, according to a study published in BMJ Open. Nancy Kass, lead author of the study, says, "I have been fortunate to work with many scholars participating in Fogarty bioethics programs. The data we've collected indicate that former trainees from sub-Saharan Africa are leaving a tremendously positive mark on the African bioethics landscape, both in terms of service and important scholarship. Their work clearly is making a critical impact on the welfare of communities and on improving health research institutions." Kass jointly leads the Johns Hopkins-Fogarty African Bioethics Training Program with Adnan Hyder, both professors at the Johns Hopkins Berman Institute of Bioethics and the Johns Hopkins Bloomberg School of Public Health. The Johns Hopkins-Fogarty program has trained African scholars since 2000, and now coordinates the African Bioethics Consortium, a network of US and African institutions working collaboratively to enhance institutional capacities in international research ethics through training, research and service. The BMJ Open study looks back on the 10 bioethics training programs FIC funded between 2000 and 2011 that were available to African scholars, including the Johns Hopkins-Fogarty program. According to surveys returned by 171 former trainees, they were significantly more likely to be a bioethics course instructor, serve on an Institutional Review Board, serve as an investigator on a bioethics research grant, and to have published a bioethics-related research manuscript than before training. Prior to Fogarty bioethics training, 22% of respondents reported spending at least half of their professional time on bioethics, a figure that had grown to 53% post-training. The study proposes that "a crucial outcome of organised training programmes may be their ability to foster lasting networks of professional researchers and academics." Hyder, senior author of the study, points to specific data, noting that all but seven scholars who responded to the study were living and working in Africa, with the large majority (93%) living in the same country as when they participated in the training program. "Along with the other findings on teaching, research and service, this shows that the Fogarty programs are building sustainable bioethics capacity in Africa, and that trainees are taking what they learn and implementing it at home," says Hyder. The Fogarty International Center is dedicated to advancing the mission of the National Institutes of Health by supporting and facilitating global health research conducted by U.S. and international investigators, building partnerships between health research institutions in the U.S. and abroad, and training the next generation of scientists to address global health needs. For more information visit http://www. . The Johns Hopkins Berman Institute of Bioethics is the home for collaborative scholarship and teaching on the ethics of clinical practice, public health and biomedical science at Johns Hopkins University. Since 1995, the Institute has worked with governmental agencies, nongovernmental and private sector organizations to address and resolve ethical issues. Institute faculty members represent diverse disciplines including medicine, nursing, law, philosophy, public health and the social sciences. More information is available at http://www. .


Lipton M.,University of Sussex | Saghai Y.,The Johns Hopkins Berman Institute of Bioethics
Global Food Security | Year: 2016

Though reducible by known means, food insecurity remains widespread, with tightening constraints on alternative policies to address it. In this article, we argue that in many developing countries more equal distribution of land is a key, yet often neglected, policy option, and that state-led land reform remains a major, ethically defensible route for addressing food insecurity and related disadvantages. In assessing empirically and ethically redistributive land reform to smallholders, we seek to advance the debate in global food security and to make a contribution to farmland-access ethics, that is, the moral evaluation of actions, practices, policies, and laws that affect farmland distribution, allocation, and use. © 2016 Elsevier B.V.


Barsdorf N.,University of Bergen | Maman S.,University of North Carolina | Kass N.,The Johns Hopkins Berman Institute of Bioethics | Slack C.,University of KwaZulu - Natal
Developing World Bioethics | Year: 2010

Access to treatment, in HIV vaccine trials (HVTs), remains et al. In most prevention trials, including in South Africa, participants who seroconvert are referred to publicly funded programmes for treatment. This strategy is problematic when there is inadequate and uneven access to public sector antiretroviral therapy (ART) and support resources. The responsibilities, if any, of researchers, sponsors and public health authorities involved in HVTs has been hotly debated among academics, scholars, representatives of international organizations and sponsors. However, there is little published on community perceptions. Recent guidance asserts that communities should make inputs into treatment and care decisions. This qualitative study explored a South African community's perceptions of who should provide what to HVT participants as well as how and why this should be done. Twenty-nine adults working at or attending five primary health care clinics in two rural areas in KwaZulu-Natal participated in in-depth interviews. Respondents expressed that researchers should 'help participants to access' treatment and care 'because they are in a position to do so' and 'are in a relationship with' trial participants. Respondents suggested that researchers could help by 'facilitating referral' until such time that participants can access care and treatment on their own. We highlight a series of implications for researchers in HVTs, including their need to be aware of prospective participants' considerable trust in and respect for researchers, the responsibility that this places on them, and the need for clear communication with communities so as not to erode community trust. © 2009 Blackwell Publishing Ltd.

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