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Article ; Online: 500 hats: exploring the challenges of boundary and community--reflections on professionalization.

Heesters, Ann

HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues

2012 Volume 24, Issue 3, Page(s) 171–178

Abstract: I argue that it is possible to reframe the current debates over professionalization in a way that can account for disagreement without insisting that its advocates and opponents are adversaries. Giles Scofield, and critics like him, may be understood as ... ...

Abstract	I argue that it is possible to reframe the current debates over professionalization in a way that can account for disagreement without insisting that its advocates and opponents are adversaries. Giles Scofield, and critics like him, may be understood as engaging in the sort of theoretical disagreement that is an inescapable and vital part of our practice. The field could profit from the work of legal theorist Ronald Dworkin who has long argued that people of good will and great competence need not share foundational assumptions. They may, instead, be advancing rival interpretations of what the practice of healthcare ethics (PHE) requires.
MeSH term(s)	Bioethics ; Ethicists/standards ; Humans ; Professional Competence ; Professional Practice ; Professional Role
Language	English
Publishing date	2012-08-12
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	1042368-0
ISSN	1572-8498 ; 0956-2737
ISSN (online)	1572-8498
ISSN	0956-2737
DOI	10.1007/s10730-012-9190-0
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Article ; Online: Exposure to moral stressors and associated outcomes in healthcare workers: prevalence, correlates, and impact on job attrition.

Nazarov, Anthony / Forchuk, Callista A / Houle, Stephanie A / Hansen, Kevin T / Plouffe, Rachel A / Liu, Jenny J W / Dempster, Kylie S / Le, Tri / Kocha, Ilyana / Hosseiny, Fardous / Heesters, Ann / Richardson, J Don

European journal of psychotraumatology

2024 Volume 15, Issue 1, Page(s) 2306102

Abstract: ... ...

Abstract	Introduction
MeSH term(s)	Humans ; Prevalence ; Pandemics ; Canada/epidemiology ; Morals ; COVID-19/epidemiology ; Health Personnel
Language	English
Publishing date	2024-02-09
Publishing country	United States
Document type	Journal Article
ZDB-ID	2586642-4
ISSN	2000-8066 ; 2000-8066
ISSN (online)	2000-8066
ISSN	2000-8066
DOI	10.1080/20008066.2024.2306102
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Article ; Online: Dementia and sexuality in long-term care: Incompatible bedfellows?

Grigorovich, Alisa / Kontos, Pia / Heesters, Ann / Martin, Lori Schindel / Gray, Julia / Tamblyn Watts, Laura

Dementia (London, England)

2021 Volume 21, Issue 4, Page(s) 1077–1097

Abstract: Despite the recognized benefits of sexual expression and its importance in the lives of people living with dementia, research demonstrates that there are multiple barriers to its positive expression (e.g., expression that is pleasurable and free of ... ...

Abstract	Despite the recognized benefits of sexual expression and its importance in the lives of people living with dementia, research demonstrates that there are multiple barriers to its positive expression (e.g., expression that is pleasurable and free of coercion, discrimination, and violence) in RLTC homes. These barriers constitute a form of discrimination based on age and ability, and violate the rights of persons living with dementia to dignity, autonomy, and participation in everyday life and society. Drawing on a human rights approach to dementia and sexual expression, we explored the experiences of diverse professionals, family members, and persons living with dementia with explicit attention to the ways in which macro-level dynamics are influencing the support, or lack thereof, for sexual expression at the micro level. Focus groups and in-depth interviews were conducted with 27 participants, and the collected data were analyzed thematically. While all participants acknowledged that intimacy and sexual expression of persons living with dementia should be supported, rarely is such expression supported in practice. Micro-level factors included negative attitudes of professionals toward sexual expression by persons living with dementia, their discomfort with facilitating intimacy and sexual expression in the context of their professional roles, their anxieties regarding potential negative reactions from family members, and concerns about sanctions for failing to prevent abuse. In our analysis, we importantly trace these micro-level factors to macro-level factors. The latter include the cultural stigma associated with dementia, ageism, ableism, and erotophobia, all of which are reproduced in, and reinforced by, professionals' education, as well as legal and professional standards that exclusively focus on managing and safeguarding residents from abuse. Our analysis demonstrates a complexity that has enormous potential to inform future research that is critically needed for the development of educational initiatives and to promote policy changes in this area.
MeSH term(s)	Dementia ; Humans ; Long-Term Care ; Sexual Behavior ; Sexual Partners ; Sexuality
Language	English
Publishing date	2021-12-14
Publishing country	England
Document type	Journal Article
ZDB-ID	2084045-7
ISSN	1741-2684 ; 1471-3012
ISSN (online)	1741-2684
ISSN	1471-3012
DOI	10.1177/14713012211056253
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Article ; Online: Central Recruitment: A process for engaging and recruiting individuals with spinal cord injury/disease in research at Toronto Rehabilitation Institute.

Craven, B Catharine / Brisbois, Louise / Pelletier, Chelsea / Rybkina, Julia / Heesters, Ann / Verrier, Mary Caroline

The journal of spinal cord medicine

2021 Volume 44, Issue sup1, Page(s) S240–S249

Abstract: Context: Insufficient recruitment is a barrier to research and limits statistical power. We describe an initiative aimed to streamline recruitment and consent processes for inpatients with spinal cord injury or disease (SCI/D) via implementation of a ... ...

Abstract	Context: Insufficient recruitment is a barrier to research and limits statistical power. We describe an initiative aimed to streamline recruitment and consent processes for inpatients with spinal cord injury or disease (SCI/D) via implementation of a Central Recruitment (CR) process. The CR process adhered to ethical standards, reduced participant burden, and maximized research participation. Methods: In this CR process, the inpatient's nurse affirmed suitability for research approach based on fluency, cognition and health stability. A patient research liaison (PRL) was the sole contact for information regarding the research process, and introduced ongoing studies, screened for eligibility, and completed the consent process(es). Results: Over five and a half years, 1,561 inpatients with SCI/D were screened for eligibility upon admission, of whom 80% (1256/1561) were deemed suitable for the PRL approach. Of those suitable for the CR process, 80% (1001/1256) agreed to discuss current research opportunities, 46% (235/516) consented to participate in one or more studies, and 86% (856/1001) agreed to future research contact. Conclusion: This process adhered to ethical procedures and reduced the burden of having multiple researchers approach each individual inpatient regarding research participation, with high consent rates for low-risk studies. Future evaluation of the process scalability is underway.
MeSH term(s)	Hospitalization ; Humans ; Inpatients ; Longitudinal Studies ; Spinal Cord Injuries
Language	English
Publishing date	2021-11-15
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1223949-5
ISSN	2045-7723 ; 1079-0268
ISSN (online)	2045-7723
ISSN	1079-0268
DOI	10.1080/10790268.2021.1970898
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Article ; Online: Ethical decision making during a healthcare crisis: a resource allocation framework and tool.

Guidolin, Keegan / Catton, Jennifer / Rubin, Barry / Bell, Jennifer / Marangos, Jessica / Munro-Heesters, Ann / Stuart-McEwan, Terri / Quereshy, Fayez

Journal of medical ethics

2021 Volume 48, Issue 8, Page(s) 504–509

Abstract: The COVID-19 pandemic has strained healthcare resources the world over, requiring healthcare providers to make resource allocation decisions under extraordinary pressures. A year later, our understanding of COVID-19 has advanced, but our process for ... ...

Abstract	The COVID-19 pandemic has strained healthcare resources the world over, requiring healthcare providers to make resource allocation decisions under extraordinary pressures. A year later, our understanding of COVID-19 has advanced, but our process for making ethical decisions surrounding resource allocation has not. During the first wave of the pandemic, our institution uniformly ramped-down clinical activity to accommodate the anticipated demands of COVID-19, resulting in resource waste and inefficiency. In preparation for the second wave, we sought to make such ramp down decisions more prudently and ethically. We report the development of a tool that can be used to make fair and ethical decisions in times of resource scarcity. We formed an interprofessional team to develop and use this tool to ensure that a diverse range of stakeholder perspectives were represented in this development process. This team, called the clinical activity recovery team, established institutional objectives that were combined with well-established procedural values, substantive ethical principles and decision-making criteria by using a variation on the well-known accountability for reasonableness ethical framework. The result of this is a stepwise, semiquantitative, ethical decision tool that can be applied to resource allocation challenges in order to reach fair and ethically defensible decisions. This ethical decision tool can be applied in various contexts and may prove useful at both the institutional and the departmental level; indeed this is how it is applied at our centre. As the second wave of COVID-19 strains healthcare resources, this tool can help clinical leaders to make fair decisions.
MeSH term(s)	COVID-19/epidemiology ; Decision Making ; Delivery of Health Care ; Humans ; Pandemics ; Resource Allocation
Language	English
Publishing date	2021-05-21
Publishing country	England
Document type	Journal Article
ZDB-ID	194927-5
ISSN	1473-4257 ; 0306-6800
ISSN (online)	1473-4257
ISSN	0306-6800
DOI	10.1136/medethics-2021-107255
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Article ; Online: Patient consent preferences on sharing personal health information during the COVID-19 pandemic: "the more informed we are, the more likely we are to help".

Tosoni, Sarah / Voruganti, Indu / Lajkosz, Katherine / Mustafa, Shahbano / Phillips, Anne / Kim, S Joseph / Wong, Rebecca K S / Willison, Donald / Virtanen, Carl / Heesters, Ann / Liu, Fei-Fei

BMC medical ethics

2022 Volume 23, Issue 1, Page(s) 53

Abstract: Background: Rapid ethical access to personal health information (PHI) to support research is extremely important during pandemics, yet little is known regarding patient preferences for consent during such crises. This follow-up study sought to ascertain ...

Abstract	Background: Rapid ethical access to personal health information (PHI) to support research is extremely important during pandemics, yet little is known regarding patient preferences for consent during such crises. This follow-up study sought to ascertain whether there were differences in consent preferences between pre-pandemic times compared to during Wave 1 of the COVID-19 global pandemic, and to better understand the reasons behind these preferences. Methods: A total of 183 patients in the pandemic cohort completed the survey via email, and responses were compared to the distinct pre-pandemic cohort (n = 222); all were patients of a large Canadian cancer center. The survey covered (a) broad versus study-specific consent; (b) opt-in versus opt-out contact approach; (c) levels of comfort sharing with different recipients; (d) perceptions of commercialization; and (e) options to track use of information and be notified of results. Four focus groups (n = 12) were subsequently conducted to elucidate reasons motivating dominant preferences. Results: Patients in the pandemic cohort were significantly more comfortable with sharing all information and biological samples (90% vs. 79%, p = 0.009), sharing information with the health care institution (97% vs. 83%, p < 0.001), sharing information with researchers at other hospitals (85% vs. 70%, p < 0.001), sharing PHI provincially (69% vs. 53%, p < 0.002), nationally (65% vs. 53%, p = 0.022) and internationally (48% vs. 39%, p = 0.024) compared to the pre-pandemic cohort. Discomfort with sharing information with commercial companies remained unchanged between the two cohorts (50% vs. 51% uncomfortable, p = 0.58). Significantly more pandemic cohort patients expressed a wish to track use of PHI (75% vs. 61%, p = 0.007), and to be notified of results (83% vs. 70%, p = 0.012). Thematic analysis uncovered that transparency was strongly desired on outside PHI use, particularly when commercialization was involved. Conclusions: In pandemic times, patients were more comfortable sharing information with all parties, except with commercial entities, where levels of discomfort (~ 50%) remained unchanged. Focus groups identified that the ability to track and receive results of studies using one's PHI is an important way to reduce discomfort and increase trust. These findings meaningfully inform wider discussions on the use of personal health information for research during global crises.
MeSH term(s)	COVID-19/epidemiology ; Canada ; Follow-Up Studies ; Health Records, Personal ; Humans ; Informed Consent ; Pandemics ; Patient Preference
Language	English
Publishing date	2022-05-20
Publishing country	England
Document type	Journal Article
ZDB-ID	2041552-7
ISSN	1472-6939 ; 1472-6939
ISSN (online)	1472-6939
ISSN	1472-6939
DOI	10.1186/s12910-022-00790-z
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Article: Does clinical trial participation improve outcomes in patients with ovarian cancer?

Khoja, L / Horsley, L / Heesters, A / Machin, J D / Mitchell, C / Clamp, A R / Jayson, G C / Hasan, J

ESMO open

2016 Volume 1, Issue 4, Page(s) e000057

Abstract: Introduction: Treatment on a clinical trial is considered to be beneficial to oncology patients. However, supportive evidence for this is scarce. Trial effect describes the phenomenon of improved health outcomes in patients treated with standard of care ...

Abstract	Introduction: Treatment on a clinical trial is considered to be beneficial to oncology patients. However, supportive evidence for this is scarce. Trial effect describes the phenomenon of improved health outcomes in patients treated with standard of care (SOC) on trial compared to those receiving SOC outside of a clinical trial. We evaluated trial effect in patients with ovarian cancer treated at our tertiary cancer centre. Methods: We performed a retrospective cohort study of patients with ovarian cancer treated at The Christie National Health Service Foundation Trust. Patients treated on one of three first-line clinical trials: (SCOTROC-4, ICON-5, ICON-7) were matched (for age, International Federation of Gynaecology and Obstetrics stage, surgical status and performance status) with individuals receiving the same SOC off trial. Survival was calculated using Kaplan-Meier methodology. Results: 60 patients were evaluated; 30 on trial and 30 on SOC off trial. The median progression-free survival (PFS) was 21.8 months (control group) and 25.9 months (trial group), median overall survival (OS) was 64.3 months (control group) and 68.9 months (trial group). There was no difference in PFS (log-rank test: HR 0.87 (95% CI 0.48 to 1.54), p=0.6) or OS (log-rank test: HR 0.87 (95% CI 0.46 to 1.64), p=0.7) between groups. Conclusions: Patient survival was similar regardless if treated on trial or as SOC. Our findings do not support trial effect, at least in a tertiary cancer centre. Clinical trial participation in specialised cancer centres promotes best practice to the benefit of all patients. These findings may impact discussions round consent of patients to trials and organisation of oncology services.
Language	English
Publishing date	2016-06-08
Publishing country	England
Document type	Journal Article
ISSN	2059-7029
ISSN	2059-7029
DOI	10.1136/esmoopen-2016-000057
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Article ; Online: Bioethics consultation practices and procedures: a survey of a large Canadian community of practice.

Greenberg, R A / Anstey, K W / Macri, R / Heesters, A / Bean, S / Zlotnik Shaul, R

HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues

2013 Volume 26, Issue 2, Page(s) 135–146

Abstract: The literature fails to reflect general agreement over the nature of the services and procedures provided by bioethicists, and the training and core competencies this work requires. If bioethicists are to define their activities in a consistent way, it ... ...

Abstract	The literature fails to reflect general agreement over the nature of the services and procedures provided by bioethicists, and the training and core competencies this work requires. If bioethicists are to define their activities in a consistent way, it makes sense to look for common ground in shared communities of practice. We report results of a survey of the services and procedures among bioethicists affiliated with the University of Toronto Joint Centre for Bioethics (JCB). This is the largest group of bioethicists working in healthcare organizations in Canada. The results suggest there are many common services and procedures of JCB bioethicists. This survey can serve as a baseline for further exploration of the work of JCB bioethicists. Common practices exist with respect to the domains of practice, individual reporting relationships, service availability within business hours and the education and training of the bioethicist.
MeSH term(s)	Bioethics ; Credentialing ; Ethicists/education ; Ethicists/standards ; Ethics Consultation ; Humans ; Ontario ; Professional Practice ; Surveys and Questionnaires
Language	English
Publishing date	2013-12-04
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	1042368-0
ISSN	1572-8498 ; 0956-2737
ISSN (online)	1572-8498
ISSN	0956-2737
DOI	10.1007/s10730-013-9230-4
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Article ; Online: The use of personal health information outside the circle of care: consent preferences of patients from an academic health care institution.

Tosoni, Sarah / Voruganti, Indu / Lajkosz, Katherine / Habal, Flavio / Murphy, Patricia / Wong, Rebecca K S / Willison, Donald / Virtanen, Carl / Heesters, Ann / Liu, Fei-Fei

BMC medical ethics

2021 Volume 22, Issue 1, Page(s) 29

Abstract: Background: Immense volumes of personal health information (PHI) are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect ... ...

Abstract	Background: Immense volumes of personal health information (PHI) are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences. Methods: Patients were invited to complete a 27-item survey focusing on: (a) broad versus specific consent; (b) opt-in versus opt-out approaches; (c) comfort level sharing with different recipients; (d) attitudes towards commercialization; and (e) options to track PHI use and study results. Results: 222 participants were included in the analysis; 83% were comfortable sharing PHI with researchers at their own hospital, although younger patients (≤ 49 years) were more uncomfortable than older patients (50 + years; 13% versus 2% uncomfortable, p < 0.05). While 56% of patients preferred broad consent, 38% preferred specific consent; 6% preferred not sharing at all. The majority of patients (63%) preferred to be asked for permission before entry into a contact pool. Again, this trend was more pronounced for younger patients (≤ 49 years: 76%). Approximately half of patients were uncomfortable sharing PHI with commercial enterprises (51% uncomfortable, 27% comfortable, 22% neutral). Most patients preferred to track PHI usage (61%), with the highest proportion once again reported by the youngest patients (≤ 49 years: 71%). A majority of patients also wished to be notified regarding study results (70%). Conclusions: While most patients were willing to share their PHI with researchers within their own institution, many preferred a transparent and reciprocal consent process. These data also suggest a generational shift, wherein younger patients preferred more specific consent options. Modernizing consent policies to reflect increased autonomy is crucial in fostering sustained public engagement with medical research.
MeSH term(s)	Artificial Intelligence ; Health Records, Personal ; Humans ; Informed Consent ; Patient Preference ; Trust
Language	English
Publishing date	2021-03-24
Publishing country	England
Document type	Journal Article
ZDB-ID	2041552-7
ISSN	1472-6939 ; 1472-6939
ISSN (online)	1472-6939
ISSN	1472-6939
DOI	10.1186/s12910-021-00598-3
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Article ; Online: Education for ethics practice: tailoring curricula to local needs and objectives.

Cline, Cheryl / Heesters, Ann / Secker, Barbara / Frolic, Andrea

HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues

2012 Volume 24, Issue 3, Page(s) 227–243

Abstract: Currently, there is no authoritative credentialing process for individuals engaged in ethics practice, no accreditation system that sets minimum education standards for programs aiming to prepare these individuals for their work, and little evidence ... ...

Abstract	Currently, there is no authoritative credentialing process for individuals engaged in ethics practice, no accreditation system that sets minimum education standards for programs aiming to prepare these individuals for their work, and little evidence available that any particular training model is actually achieving its pedagogical goals. At the same time, a number of healthcare organizations and universities now routinely offer post-graduate programs, clinical fellowships and in-house training specifically devised to prepare graduates for ethics practice. However, while their numbers appear to be growing, information about these programs is limited. In this paper, we describe the goals, content and strategies of three educational programs offered in Ontario, Canada. These case studies highlight the diversity of ethics education available to those who engage in ethics practice and underscore the need to take this variety into account in the development of future education standards that would specify minimally acceptable educational requirements.
MeSH term(s)	Bioethical Issues ; Bioethics/education ; Curriculum ; Goals ; Humans ; Ontario ; Professional Practice
Language	English
Publishing date	2012-09-03
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	1042368-0
ISSN	1572-8498 ; 0956-2737
ISSN (online)	1572-8498
ISSN	0956-2737
DOI	10.1007/s10730-012-9187-8
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