RE: Canadian Assessment of Deep Brain Stimulation Access: The Canada Study

Harding, Louise; Illes, Judy

doi:10.1017/cjn.2020.151

Cited by 5 publications

(3 citation statements)

References 1 publication

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“…We note independently that the requirement for only 6-8 attributes all ultimately related to biomedical aspects of candidate neurotechnologies, and excluded variables involving diverse cultural views about interventions on the brain. For participants for whom wholly biomedical explanations of disease is not sufficient, or for those living in rural and remote geographic regions with challenging access to advances to new technologies ( Harding & Illes, 2021 ), the relevance of the DCE was possibly too low. Indeed, should the study actually have recruited sufficient responses to power the analysis, adoption of results would have excluded their views at best; at worst, they would only serve to further stigmatize and marginalize them, and increase a gap in already well documented health disparities.…”

Section: Observations and Discussionmentioning

confidence: 99%

Ethical Considerations for Discrete Choice Experiments with Caregivers

Illes

Lawson

McDonald

2022

Journal of Empirical Research on Human Research Ethics

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We discuss research ethics challenges experienced while running a discrete choice experiment administered to caregivers of children with treatment resistant pediatric epilepsy. We highlight ethical considerations around the study design of the discrete choice experimental paradigm that pertain to vulnerability of and caregiving burden on the population, imbalance of benefit-to-load of participation, and limitations of cultural meaningfulness and generalizability.

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Section: Observations and Discussionmentioning

confidence: 99%

Ethical Considerations for Discrete Choice Experiments with Caregivers

Illes

Lawson

McDonald

2022

Journal of Empirical Research on Human Research Ethics

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“…Harding and Illes conducted a secondary analysis of the data to compare the expected number of implantations in the urban and rural areas of each province with the national rate and reported a possible access issue in the Atlantic provinces. 8 Crispo and colleagues reported significant regional variation in DBS implantation rates in Ontario. 9 Recently, two priority areas that have been identified for neuroethical inquiry are "issues of equity, resource allocation, and distributive justice" 10 and the cultural meanings of advanced neurotechnologies.…”

Section: Introductionmentioning

confidence: 99%

Mapping the Landscape of Equitable Access to Advanced Neurotechnologies in Canada

Harding

McFarlane

Honey

et al. 2023

Can. J. Neurol. Sci.

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ABSTRACT:Geographic, social, political, and economic factors shape access to advanced neurotechnologies, yet little previous research has explored the barriers, enablers, and areas of opportunity for equitable and meaningful access for diverse patient communities across Canada. We applied a mixed-mode approach involving semi-structured interviews and rating scale questions to consult with 24 medical experts who are involved in the care of patients who undergo functional neurosurgery targeting the brain. Seven major themes emerged from the qualitative analysis: Health care system, Neurotechnology features, Patient demographics, Target condition features, Ethics, Upstream barriers and enablers, and Areas of opportunity. Descriptive statistics of the Likert-scale responses suggest that interviewees perceive a disparity between the imperative of access to advanced neurotechnologies for people living in rural and remote areas and the likelihood of achieving such access. The results depict a complex picture of access to functional neurosurgery in Canada with pockets of excellence and a motivation to improve the availability of care for vulnerable populations through the expansion of distributed care models, improved health care system efficiencies, increasing funding and support for patient travel, and increasing awareness about and advocacy for advanced neurotechnologies.

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“…For example, genomics research with indigenous communities has long been held to pose special risks to individuals and communities alike and requires enhanced protocols for collaboration, cultural competency, transparency, and community capacity building [5]. Neuroscience research has followed suit as perspectives on the brain and mind extend well beyond western concepts [6,7], and equitable access to translational interventions remains unrealized [8][9][10]. Collaborative approaches to research, including participatory action methods toward the cocreation of studies and knowledge sharing have been developed in response.…”

Section: Introductionmentioning

confidence: 99%

Ethical Imperatives for Working With Diverse Populations in Digital Research

Herington,

Connelly,

Illes

2023

J Med Internet Res

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Digital research methodologies are driving a revolution in health technology but do not yet fully engage diverse and historically underrepresented populations. In this paper, we explore the ethical imperative for such engagement alongside accompanying challenges related to recruitment, appreciation of risk, and confidentiality, among others. We critically analyze existing research ethics frameworks and find that their reliance on individualistic and autonomy-focused models of research ethics does not offer adequate protection in the context of the diversity imperative. To meet the requirements of justice and inclusivity in digital research, methods will benefit from a reorientation toward more participatory practices.

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RE: Canadian Assessment of Deep Brain Stimulation Access: The Canada Study

Cited by 5 publications

References 1 publication

Ethical Considerations for Discrete Choice Experiments with Caregivers

Ethical Considerations for Discrete Choice Experiments with Caregivers

Mapping the Landscape of Equitable Access to Advanced Neurotechnologies in Canada

Ethical Imperatives for Working With Diverse Populations in Digital Research

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