Faculty and members of the Advisory Board of Neuroethics Canada, a group of distinguished neuroscientists, ethicists, and community leaders, stand together in this time of COVID-19 to emphasize the importance of global cooperation.
While the closure of physical borders is a necessary means to curtail the spread of the coronavirus, intellectual borders must remain open to international collaboration among scientists and society to reverse the fragmentation caused by the pandemic.
It is through worldwide cooperation that stigma and discrimination will be suppressed, cures discovered, and preventive measures to new threats implemented for a safer future for all people.
Infographic resources for pediatric Drug Resistant Epilepsy
Ask yourself, “would pamphlets or posters be a good means of sharing information for blinded patients?”. Hopefully your response falls somewhere along the spectrum of, “of course not” to “that’s not ideal”. And you’d be right; when creating a resource for a particular group, it’s essential that their needs be considered to ensure the information is shared in a meaningful and functional way. This is true in all domains, be it websites, videos, or printed resources. If the resource is inaccessible to the group you wish to share your research with, then its usefulness is limited to academic discussion and it will not be effective in the real world.
Despite efforts to elucidate guidelines on how to best engage with the public, research shows that many patient education resources aren’t very palatable to the average person. Issues with technical jargon, lack of visual aids, and incomplete information all contribute to the inaccessibility of an educational resource. These issues can be compounded when sharing findings on complex topics such as neurotechnological treatments for pediatric drug resistant epilepsy (DRE). Ultimately, when creating resources from one’s research, the main concern should be that it is readable, understandable, and useful to those who look to access those resources (1).
The reading age for a text is measured by its readability, which is a proxy score on how easily it can be read and processed by the reader. Readability commonly assesses the use of familiar words, density of syllables, and length of sentences to determine its score. The American Medical Association (AMA) suggests that all patient resources be written at or below 7th grade reading level, the average American reading level (2). However, studies on resources curated for ophthalmology, lung cancer, and dementia found that nearly all patient education materials produced exceeded these AMA recommendations, leading to materials that were beyond the general populations ability to interpret (3,4,5). In areas where patient’s may be suffering from cognitive deficits, such as epilepsy, clarity in written resources is paramount. Yet patient education websites for epilepsy surgery show no greater care for readability than other fields, with the majority written at an excessively difficult reading level (6). This pattern of low readability suggests that presently available patient resources are not accessible to the common patient, and may be contributing to lower levels of health literacy.
While readability is an excellent way to assess whether your audience can read your resource, it doesn’t quite capture whether they can comprehend the information it is sharing. The Patient Education Materials Assessment Tool (PEMAT) developed by the Agency for Healthcare Research Quality measures understandability in terms of content, word choice and style, use of numbers, organization, layout and design, and use of visual aids (7). These metrics are useful for determining how well patients can process a resource’s information and identify the key messages. Applying these measures to current resources reveals how short of the mark they fall in communicating information to patients. In a review of diabetes education materials, only 16% met criteria for understandability (8). Neurosurgery resources were similarly rated with a notable lack of summaries, main messaging, and visual aids (9). This finding is corroborated by another study on epilepsy decision-making, which notes more than half of reviewed patient education materials lacked visual aids entirely (6). Taken together, it’s clear that much improvement is needed to promote clearer communication of research findings to patients.
The final piece of the patient resource puzzle is ensuring the information a resource is sharing is useful to the reader.Meaning, can they apply they information they learned to benefit their healthcare journey? The idea of usefulness aligns well with the PEMAT measure of actionability: “consumers of diverse backgrounds and varying levels of health literacy can identify what they can do based on the information presented” (7). In practice, patient education resources fall short once again, with only 1 diabetes resource meeting criteria for actionability, and the majority of neurosurgery resources failing to identify next steps or tools to help patients take action (8,9). Usefulness is also limited by inclusion of all relevant information, and in cases where decision-making is needed it is important for patients to be aware of all relevant risks and benefits to make informed healthcare decisions. Yet, nearly half of reviewed resources for epilepsy surgery neglected to touch on risks and benefits, with some providing biased information in one way or the other (e.g. discussing risks or benefits but not both) (6). It is startling to see that the vast majority of carefully crafted patient resources are not proving to be useful to the patients they serve.
A Neuroethical approach to Patient Education Resources
So, how do we make patient resources that are more engaging for patients? An excellent case study in this area are the infographic resources curated alongside research on decision-making for pediatric drug resistant epilepsy.
The large NIH funded project “Informing Choice for Neurotechnological Innovation in Pediatric Epilepsy Surgery” has several arms of research consisting of clinical trials,media analysis, youth interviews, family interviews, caregiver interviews, and genetic testing interviews (10-15). Though the methods for each arm of research varied, the methodology for creating patient-centered infographics stayed consistent.
In neuroethics, the patient’s rights, privacy, and voice are held in high esteem, and the NIH in particular has stated that engagement with the public in research is key. Bidirectional dialogue is encouraged to ensure that patients can engage with the research, and researchers can stay abreast of public desires, concerns, and health literacy (16). This bidirectional dialogue was employed in the development of the infographics, seeking patient and caregiver input at various stages throughout the process to guarantee the patient voice was incorporated and to ensure the resulting infographics were readable, understandable, and useful.
Infographic development process
A value-guided iterative approach was used for the development of all the infographics. The key findings of the research were extracted and summarized, informative headers and take-home messages were drafted. A word document was created with the information in plain text within a table, to resemble the proposed infographic layout, and was then reviewed by caregivers and research collaborators to ensure accuracy and understandability. Once through this initial process, the infographic was prepared, refined by the researchers, and sent to caregivers for review via a short 15-minute survey. The survey gathered information about clarity of main points, conciseness, engagement, visual appeal, and usefulness.
The survey also gauged respondent’s prior knowledge, willingness to share the infographic, and preferred format to engage with the resource. With feedback in hand, the final version of the infographic was designed and uploaded to the study’s page with a QR code included in the design to allow for further feedback and refinement in the future.
On the sample infographic included to the side you can see the clear title, summary, research design, and action item (highlighted in red).
Readability was ensured through simple language use informed by PEMAT measures and feedback from caregivers. Understandability was ameliorated through the use of clear design, layout, and imagery. Nesting topics underneath key themes to retain a sense of cohesion. Both risks and benefits were addressed to better inform the reader of all relevant information and the take home messages summarize the useful pieces of information the reader can take away to apply in their healthcare journey.
Now that we have a framework for how to create and improve patient education materials, future researchers will be able to follow in our footsteps and create patient resources that are accessible. Such accessibility in the form of readability, understandability, and usefulness are highly important, as many North Americans do not possess high levels of health literacy (17,18). Health literacy comprises all the necessary skills to access, process, and comprehend health information in order to make informed healthcare decisions (19). Researchers have amassed a wealth of data on health, healthcare, and treatment options that have the potential to greatly impact the lives of many suffering with health conditions. In order to unlock that potential, patient voices need to be acknowledged and incorporated when creating resources. In this way we can bridge a crucial gap between bench and bedside, creating a more equitable and accessible healthcare system for all.
All 6 infographics summarizing the research of the NIH study on decision-making in paediatric DRE can be viewed and downloaded in English, Spanish or French here.
Ashley Lawson, BScH, is the Knowledge Translation and Communications Specialist for Neuroethics Canada as well as the Canadian Brain Research Strategy. She holds a Bachelor of Science in Psychology with a minor in Biology from Queen’s University.
Beaunoyer E, Arsenault M, Lomanowska AM, Guitton MJ. Understanding online health information: Evaluation, tools, and strategies. Patient education and counseling. 2017 Feb 1;100(2):183-9.
Weiss BD. Health literacy and patient safety: Help patients understand. Manual for clinicians. American Medical Association Foundation; 2007.
Patel PA, Gopali R, Reddy A, Patel KK. The Readability of Ophthalmological Patient Education Materials Provided by Major Academic Hospitals. InSeminars in Ophthalmology 2021 Apr 15 (pp. 1-6). Taylor & Francis.
Hansberry DR, White MD, D’Angelo M, Prabhu AV, Kamel S, Lakhani P, Sundaram B. Lung cancer screening guidelines: how readable are internet-based patient education resources?. American Journal of Roentgenology. 2018 Jul;211(1):W42-6.
O’Callaghan C, Rogan P, Brigo F, Rahilly J, Kinney M. Readability of online sources of information regarding epilepsy surgery and its impact on decision-making processes. Epilepsy & Behavior. 2021 Aug 1;121:108033.
J.M. Robillard, A.B. Sporn (2018). Static versus interactive online resources about dementia: A comparison of readability scores. Gerontechnology, 17(1), 29-37.
Shoemaker SJ, Wolf MS, Brach C. Development of the Patient Education Materials Assessment Tool (PEMAT): a new measure of understandability and actionability for print and audiovisual patient information. Patient education and counseling. 2014 Sep 1;96(3):395-403.
Lipari M, Berlie H, Saleh Y, Hang P, Moser L. Understandability, actionability, and readability of online patient education materials about diabetes mellitus. American Journal of Health-System Pharmacy. 2019 Feb 1;76(3):182-6.
Ramos CL, Williams JE, Bababekov YJ, Chang DC, Carter BS, Jones PS. Assessing the understandability and actionability of online neurosurgical patient education materials. World neurosurgery. 2019 Oct 1;130:e588-97.
Kaal KJ, Aguiar M, Harrison M, McDonald PJ, Illes J. The clinical research landscape of pediatric drug-resistant epilepsy. Journal of child neurology. 2020 Oct;35(11):763-6.
Munjal V, Arakelyan M, McDonald PJ, Illes J. Epilepsy through the eyes of the media: A paradox of positive reporting and challenges of access to advanced neurotechnology. Epilepsy & Behavior. 2020 Oct 1;111:107200.
Udwadia FR, McDonald PJ, Connolly MB, Hrincu V, Illes J. Youth weigh in: views on advanced neurotechnology for drug-resistant epilepsy. Journal of child neurology. 2021 Feb;36(2):128-32.
McDonald PJ, Hrincu V, Connolly MB, Harrison MJ, Ibrahim GM, Naftel RP, Chiong W, Udwadia F, Illes J. Novel neurotechnological interventions for pediatric drug-resistant epilepsy: physician perspectives. Journal of child neurology. 2021 Mar;36(3):222-9
Hrincu V, McDonald PJ, Connolly MB, Harrison MJ, Ibrahim GM, Naftel RP, Chiong W, Alam A, Ribary U, Illes J. Choice and Trade-offs: Parent Decision Making for Neurotechnologies for Pediatric Drug-Resistant Epilepsy. Journal of Child Neurology. 2021 Jun 2:08830738211015010.
Alam, A. Parfvonov, M., Hrincu, V., Lawson, A., Huang, M., Gill, I., Connolly, M., & Illes, J. Genetic testing impacts on decision-making in pediatric drug resistant epilepsy. 2021 (in preparation).
Greely HT, Grady C, Ramos KM, Chiong W, Eberwine J, Farahany NA, Johnson LS, Hyman BT, Hyman SE, Rommelfanger KS, Serrano EE. Neuroethics guiding principles for the NIH BRAIN initiative. Journal of Neuroscience. 2018 Dec 12;38(50):10586-8.
This blog post discusses some of the key findings from the article “Socially Assistive Robots as Mental Health Interventions for Children: A Scoping Review” published in the International Journal of Social Robotics (2020, paper here).
What is a social robot?
Social robots are small robotic devices that are capable of social interactions, such as cooperation, instruction and play. The robots can be shaped like animals (e.g., Aibo – the robotic dog (Fig. 1(a)) or characters (e.g. humanoid robot Nao (Fig. 1(b)). Among other functions, social robots can play a therapeutic role (1), serve as companions (2) and aid in education (3,4). One of the application areas of social robotics is therapy for children with autism spectrum disorder. In this domain, robotic companions have the potential to improve a variety of behavioural outcomes, including social and language skills (5). Social robots are also used with older populations. For example, robots like Paro (Fig. 1(c)) are being used in elder care settings. This baby harp seal lookalike helps reduce loneliness and agitation among residents (6).
A new mental health intervention for children
Since social robots seem to have a positive impact on mental health in different populations, there is a growing interest in using them as a tool to promote and improve mental health among children. As a result, a number of studies are being conducted to test social robots in this relatively new domain. In the Neuroscience Engagement and Smart Tech (NEST) Lab, we collected and analyzed the existing research studies which investigate the use of social robots to improve children’s mental health (10), to get a fuller view on what interventions are being tested and how.
What we know: Feasibility and short-term effects
Using social robots to benefit children’s mental health is a new and rapidly developing field. Hence, the majority of currently available studies are intended as means of exploring what is possible and what could be effective in the future. The studies usually include a single session with the robot, which shows only short-term outcomes of the interaction. While the evidence does not allow for drawing strong and long-term conclusions, the studies in our sample demonstrate that various robotic interventions are feasible. We know that social robots can be introduced and deployed in therapy, clinical and other settings. But perhaps the most crucial aspect of determining whether robotic companions could be successful, is the fact that children participating in the studies usually showed a positive response to the robots and were engaged in the interaction, e.g., distraction during vaccination (11). This positive reception makes the developments in the use of social robots promising.
What we still need to learn: Effectiveness and social impact
To be able to draw conclusions about the effectiveness of robotic interventions we need more evidence. Future research in this field needs to systematically address well-focused questions around specific outcomes (e.g., stress reduction). Additionally, potential social impacts of the robots should be more carefully considered. Robots are intended to be introduced into different environments as social entities. For example, a robot present at a hospital to distract children during medical procedures will likely affect others around the child such as parents and nurses. Moving forward, we need to learn more not only about specific social robot interventions that can be helpful, but also about how introducing social robots into new environments will affect social dynamics.
What about ethics?
Conducting child-robot interaction research comes with unique ethical concerns. In our scoping review of the literature, we found that the majority of studies in the sample provide only generalized statements about the assent process used (10). Transparency about how the robot is introduced and described to young participants is crucial, as children of different ages may have different beliefs about the animacy of robots. Other notable ethical considerations include attachment and deception. For example, children could experience distress when the robot is taken away or mistreated (12). The key to proactively addressing these ethical issues could be using participatory approaches throughout the research process. Working together with children and parents will help minimize the risk and maximize the benefit of future social robot mental health interventions.
Acknowledgements to the leaders of this work Dr. Julie Robillard and Dr. Tony Prescott.
Abdi J, Al-Hindawi A, Ng T, Vizcaychipi MP. Scoping review on the use of socially assistive robot technology in elderly care. BMJ Open. 2018 Feb 1;8(2):e018815.
Looije R, Neerincx MA, Peters JK, Henkemans OAB. Integrating Robot Support Functions into Varied Activities at Returning Hospital Visits. Int J of Soc Robotics. 2016 Aug 1;8(4):483–97.
Ros R, Oleari E, Pozzi C, Sacchitelli F, Baranzini D, Bagherzadhalimi A, et al. A Motivational Approach to Support Healthy Habits in Long-term Child–Robot Interaction. Int J of Soc Robotics. 2016 Nov 1;8(5):599–617.
Pennisi P, Tonacci A, Tartarisco G, Billeci L, Ruta L, Gangemi S, et al. Autism and social robotics: A systematic review. Autism Research. 2016;9(2):165–83.
Pu L, Moyle W, Jones C, Todorovic M. The Effectiveness of Social Robots for Older Adults: A Systematic Review and Meta-Analysis of Randomized Controlled Studies. Gerontologist. 2019;59(1):e37–51.
Kabacińska K, Prescott TJ, Robillard JM. Socially Assistive Robots as Mental Health Interventions for Children: A Scoping Review. Int J of Soc Robotics .2020 Jul 27;10.1007/s12369-020-00679-0.
Beran TN, Ramirez-Serrano A, Vanderkooi OG, Kuhn S. Reducing children’s pain and distress towards flu vaccinations: A novel and effective application of humanoid robotics. Vaccine. 2013 Jun 7;31(25):2772–7.
Kahn Jr. PH, Kanda T, Ishiguro H, Freier NG, Severson RL, Gill BT, et al. “Robovie, you’ll have to go into the closet now”: Children’s social and moral relationships with a humanoid robot. Developmental Psychology. 2012;48(2):303–14.
This blog post discusses some of the key findings from the article “Prioritizing Benefits: A Content Analysis of the Ethics in Dementia Technology Policies” published in the Journal of Alzheimer’s Disease (2019, paper here).
A new era of dementia care
From tracking devices to social robots, technology is rapidly transforming the scope of dementia care. Persons living with dementia and their caregivers can now choose from a wide range of innovative technologies to assist with everyday activities, symptom management, and more. With potential benefits such as increased autonomy and enhanced safety for persons living with dementia (1), new technologies are continuously being developed and entering the market.
Despite the excitement of innovation, the promising benefits of dementia technology must not be the only ethical implication to consider. Although monitoring technologies such as video surveillance can keep older adults safe, this may be at the cost of compromising privacy and independence. While companion robots may show potential in enhancing well-being and connection in older adults (2), this often comes with an expensive price tag. These diverse ethical implications are important for older adults to consider so they adopt technology that best aligns with their needs and values.
The question is, how are these ethical implications communicated to the dementia community through public policies?
The guidance of public policies
Alzheimer associations around the world create public-facing policies to guide the adoption and use of technology in dementia care. Given the wide array of ethical implications in need of consideration, policies play a critical role in raising the ethical issues of care technology to the dementia community. However, we found that the quality and ethical content of these policies can greatly vary, particularly around what ethical implications are being most and least discussed with the public (3).
What we found: Policies prioritize benefits
In the Neuroscience, Engagement, and Smart Tech (NEST) Lab, we analyzed the ethical content of 23 international policies using the four principles of biomedical ethics (4): beneficence, non-maleficence, autonomy, and justice (Fig. 1).
What we found was that nearly all policies (96%) discussed the benefits of using technology such as increased independence, improved social contact, and enhanced quality of life for the person affected by dementia (3). However, this near-perfect score was not matched by the other ethical principles that raise the potential risks and harms associated with using dementia care technology (Fig. 2)
Themes of justice, for example, were discussed in 74% of the policies, followed by themes of non-maleficence at 52% and autonomy at only 43% (Fig. 2). This lack of comprehensive discussion surrounding the risks and potential harms of dementia care technology is critical for users. Understanding ethical considerations such as cost, privacy, and consent are imperative for people affected by dementia to make well-informed decisions about their care.
Reshaping dementia technology policies
As dementia care technology continues to rapidly develop, so should policies that shape their adoption and use. To maximize the current and future benefits of dementia technologies, policies need to be reworked so that they are in the best interest of the dementia community. Important to this is the inclusion of not just benefits, but the potential risks and harms associated with dementia care technology. Persons with dementia, caregivers, and family members need to be actively engaged in the policy-making process to ensure patient-centred guidance in public policies.
A guide to adopting new technology in dementia care
Based on our findings, we disseminated a public resource to guide the adoption of new technologies in dementia care. Here are 10 questions for older adults to consider when adopting a new technology:
Acknowledgements to Dr. Julie Robillard for her leadership in this project and research members Tanya Feng and Mallorie Tam for their substantial contributions. This work was supported by the Canadian Consortium on Neurodegeneration in Aging and AGE-WELL NCE.
Meiland F, Innes A, Mountain G, Robinson L, van der Roest H, García-Casal JA, et al. Technologies to Support Community-Dwelling Persons With Dementia: A Position Paper on Issues Regarding Development, Usability, Effectiveness and Cost-Effectiveness, Deployment, and Ethics. JMIR Rehabil Assist Technol. 2017 Jan 16;4(1):e1.
Pike J, Picking R, Cunningham S. Robot companion cats for people at home with dementia: A qualitative case study on companotics. Dementia. 2021 May 1;20(4):1300–18.
Robillard JM, Wu JM, Feng TL, Tam MT. Prioritizing Benefits: A Content Analysis of the Ethics in Dementia Technology Policies. J Alzheimers Dis. 2019;69(4):897–904.
Beauchamp T, Childress J. Principles of Biomedical Ethics: Marking Its Fortieth Anniversary. Am J Bioeth. 2019 Nov;19(11):9–12.
Julia Wu, BSc is a Research Assistant in the Neuroscience, Engagement and Smart Tech (NEST) Lab at the University of British Columbia and BC Children’s and Women’s Hospital. Her research interests include mental health and innovative approaches to improving patient experience and person-centred care in health care systems.
This blog post discusses some of the key findings from a poster presentation for the 2021 annual meeting of the American Academy of Neurology (abstract here) and published in the Journal of Child Neurology (2021, paper here).
Neurotechnologies that can change certain functions of the brain may help children with a type of epilepsy that responds poorly to anti-seizure medication (drug-resistant epilepsy). However, there are important differences in the way that parents and doctors make treatment decisions about them.
For parents and caregivers of children with drug-resistant epilepsy (1), treatment choice goes beyond just the direct effect of the treatment on the child’s seizures. They also consider their child in context of the world and their overall quality of life (2). For doctors, treatment choice focuses on the evidence of effectiveness and the seizures themselves (3,4). Understanding both the shared and different decision-making priorities for these groups requires deeper insight into the values that drive them.
The promise and uncertainty of neurotechnologies
Neurotechnologies use innovative techniques to alter brain activity in two main ways: electrical stimulation (i.e., neuromodulation) or the removal of diseased tissue. Modern examples include responsive neurostimulation and laser interstitial thermal therapy. These treatments are gaining in popularity because of their perceived benefits, such as reversibility and limited invasiveness.
Given the special developmental needs of children, we wanted to better understand the trade-offs of benefit and risk. We talked to parents and doctors caring for children with drug-resistant epilepsy across Canada and the USA. We asked them to identify the most important factors they consider when weighing novel neurotechnologies against traditional neurosurgery.
For parents, quality of life is key
When asked about new forms of neurotechnology to treat their child’s epilepsy, parents highlight the benefits including – but also beyond – seizures. Specifically, parents identify quality of life as a crucial factor. This includes life factors such as independence and freedom from the side effects of medication.
“Can they [our child] hold down a job? Can they have a house? Can they get married and have a life? To me, that was important,” said one parent.
Doctors mainly discuss seizure freedom as a measure of success. As one doctor stated, it’s important to consider multiple factors, including quality of life, but that “the big [measure] is seizure control, decreased seizure frequency, and then seizure freedom.”
Not all information is equal
For doctors, scientific evidence is the main factor in considering a new procedure, and to prioritize safety and trust. Introducing novel treatments is therefore challenging (5), because they lack clear evidence while they are being studied, especially in children.
Parents struggle to meet all kinds of information needs. They describe spending hours learning online from a range of sources–from academic articles to blog posts. The credibility and readability of these online resources varies greatly, and they report that reliable sources of information are sometimes difficult to identify.
One parent commented, “[Once the information is] on the internet …we have to decipher whether it’s real.”
Many parents suggest that it would be helpful to receive objective materials directly from hospitals or epilepsy centers.
Preserving trust for novel treatment decisions
Novel treatments disrupt conventional decision-making paradigms. Understanding the different ways medical professionals and parents approach treatment decisions can ease the experience of choosing treatment.
Parents maintain a high degree of trust in their doctors and medical team. Incorporating the different perspectives of families, young patients, and physicians preserves trust and supports inclusive clinical practice.
See the poster above for an overview of the results.
For an overview of neurotechnologies in pediatric epilepsy, see this blog post. For the views of youth on neurotechnology, see Udwadia et al.’s paper.
Acknowledgements to the leaders of this work Dr. Judy Illes (PI) and Dr. Patrick McDonald (Co-PI). I thank our collaborators Dr. Mary B. Connolly, Dr. Mark Harrison, Dr. George M. Ibrahim, Dr. Robert Naftel, and Dr. Winston Chiong, Dr. Urs Ribary and other members of the Neuroethics Canada team. This work is supported by: the National Institutes of Health grant (JI) 1RF1 # MH117805, Canada Research Chairs Program (JI), and the UBC Alcan Chair in Neurosciences (PJM).
Kwan P, Arzimanoglou A, Berg AT, Brodie MJ, Hauser WA, Mathern G, et al. Definition of drug resistant epilepsy: Consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies. Epilepsia. 2010;51(6):1069–77.
Hrincu V, McDonald PJ, Connolly MB, Harrison MJ, Ibrahim GM, Naftel RP, et al. Choice and Trade-offs: Parent Decision Making for Neurotechnologies for Pediatric Drug-Resistant Epilepsy. J Child Neurol. 2021 Jun 2;08830738211015010.
McDonald PJ, Hrincu V, Connolly MB, Harrison MJ, Ibrahim GM, Naftel RP, et al. Novel Neurotechnological Interventions for Pediatric Drug-Resistant Epilepsy: Physician Perspectives. J Child Neurol. 2020 Oct 28;0883073820966935.
Kaal KJ, Aguiar M, Harrison M, McDonald PJ, Illes J. The Clinical Research Landscape of Pediatric Drug-Resistant Epilepsy. J Child Neurol. 2020 Jun 16;0883073820931255.
Iserson KV, Chiasson PM. The Ethics of Applying New Medical Technologies. Semin Laparosc Surg. 2002 Dec 1;9(4):222–9.
Viorica Hrincu, MSc is doing her PhD in Experimental Medicine at the University of British Columbia in the Neuroscience Engagement and Smart Tech (NEST) lab.
Join us for an interactive conversation with experts on the topic of ethics and medical cannabis for children and youth in health care. The dialogue will take place both through live engagement with the public and pre-submitted questions.
We want to hear your views!
Moderators: Hal Siden, MD, MHSc Medical Director, Division Head and Investigator, BC Children’s Hospital Canuck Place Children’s Hospice Clinical Professor, University of British Columbia
Judy Illes, CM, PhD Director, Neuroethics Canada Professor of Neurology, University of British Columbia
Electroencephalographic (EEG) monitoring provides critical diagnostic and management information about patients with epilepsy and seizure mimics. Admission to an epilepsy monitoring unit (EMU) is the gold standard for such monitoring in major medical facilities worldwide. In many countries, however, access is challenged by limited resources compared to need. Triaging EMU admission in these circumstances is generally approached by unwritten protocols that vary by institution. In the absence of explicit guidance, decisions can be ethically taxing and are easy to dispute.
Drawing upon the limited triage literature from neurology and then moreso from various areas of medicine more broadly, my mentors and I developed an ethically-grounded two-component approach to EMU triage (Randhawa et al., under revision, 2021). The strategic component identifies three targets to guide improvements in EMU wait list infrastructure at the institutional level: (1) accountability to patients and public to foster transparency, (2) engagement of clinicians and administrators to achieve process improvements, and (3) empowerment of waitlist managers to promote active waitlist management strategies (see Figure).
The principled component applies an essential balance of three key moral philosophies to triage at the patient level. First, prioritarianism promotes the needs of the most ill, defined by seizure frequency and severity; however, it may also include subjective measures such as suffering. Second, utilitarianism maximizes the overall utility of resources, promoting the greatest benefits for the most people. If patients are having frequent seizures, they are more likely to benefit from EMU evaluation (utility) and are considered sicker (priority); therefore, these first two ethics principles work together. The principle of justice promotes equality by considering other relevant contextual factors such as patient’s ability to self-advocate and length of wait. This principle provides further refinement to the triage process. For example, patients who are disabled by frequent seizures may be unable to advocate for themselves to obtain a sooner admission despite the high utility and priority. As such, justice provides further impetus for accelerated admission.
These principles will be weighted differently depending on several contextual factors, such as the availability of adequate resources: high-resource settings favor prioritarianism; low-resource settings favor utilitarianism. Other factors affecting the use of these principles include patient and public values, clinician preferences, and objective metrics available to guide these decisions.
The approach we propose can inform site-specific process improvements and further revisions based on data generated at individual institutions. While much work remains to be done to explore and test implementation of the model, it provides a starting point in transforming implicit thinking about ethically-fraught circumstances related to EMUs into explicitly principled ones.
Acknowledgements to my research mentors Drs. Chantelle Hrazdil, Patrick McDonald, and Judy Illes for their substantial contributions. This work was supported in part by the UBC Faculty of Medicine, Vancouver Coastal Health Research Institute, and NIH/NIMH #RF1#MH117805 01.
Jason Randhawa, MD, is a Neurology Resident Research Assistant at Neuroethics Canada. He is a senior neurology resident based out of Vancouver General Hospital and St. Paul’s Hospital at the University of British Columbia.
A central set of behavioural principles governs the inability of humanity to consider complex, compound, and collective threats like climate change—and now, COVID-19—as moral problems.
Here, I will briefly comment on the moral analogy between the two crises using four psychological factors to explain climate inertia: cognitive complexity, uncertainty-generated optimism, tribalism and scapegoating, and temporospatial separation. By establishing how both global crises intersect in remarkably similar ways in terms of moral behaviour, I will discuss how research on COVID-19 public health adherence can promote future collective action on the climate issue.
Cognitive complexity: As stated in a 2012 article by Markowitz and Shariff (1), people struggle to form strong moral intuitions in response to complex problems requiring cognitively-effortful processes to understand.
Climate change is a quintessential example: it non-linear, consisting of non-proportional inputs and outputs, abrupt changes and tipping points, and feedback loops. These components interlock in complex ways that are not fully understood, leading to significant misconceptions among the general public. Exponential growth bias (Fig. 1.), the cognitive tendency to linearize trends, leads to gross underestimations of the threat posed by exponential progression and leads to hazardous policy delays. Moreover, climate change lacks a simplifying moral framework—one that involves intentionally caused harms to which brain regions responsible for moral judgment are most sensitive (2). Instead, climate change is commonly attributed to natural causes, with some people denying any degree of human involvement.
COVID-19 demonstrates the same nonlinearity. An infectious disease is a textbook example of exponential growth (Fig. 2): within a period of one month, COVID-19 infection rates rose from 58 to more than 150,000 in the USA alone (3). Given the natural origins of the virus, COVID-19 lacks clear human perpetrators. People may be ignorant of their role in disease transmission especially if they are asymptomatic. This is only one complicating factor in COVID-19’s complex transmission including long incubation periods and multiple risk factors. The misinformation epidemic further impedes health guidelines and fosters public mistrust in scientific and public authorities. Overall, underestimation of the viral spread at early stages led to dangerous delays in policy action: a mistake estimated to cost approximately 36,000 lives in the USA (4).
Fig. 2. COVID-19 deaths per million in the early pandemic, as of April 23, 2020. Source: European CDC; Our World in Data. (5)
Uncertainty-generated optimism: Uncertainty is another defining feature of the climate crisis. Due to the complex dynamics that underlie environmental change, our best predictions for the impacts of climate chance inevitably fluctuate (Fig. 3). Well-intentioned use of probabilistic phrases such as “likely” and “very likely” in mainstream climate reports to encompass these predictions however can mediate poor risk perception and encourage the overestimation of positive future outcomes (6).
Fig. 3. 90% confidence intervals representing statistical uncertainty in global temperature predictions, color-coded by relative contribution to total uncertainty. Source: Ed Hawkins. (7)
The COVID-19 crisis is also highly uncertain, especially at its outbreak due to limited and rapidly-changing information. This increased uncertainty and scepticism, compounded by viral misinformation (8) on social media and the internet. For the COVID-19 pandemic, the lack of past experiences to anchor predictions hindered accurate risk appraisal. This is evident in the disparity in preparedness between countries that had residual awareness from the 2003 SARS epidemic compared to countries facing the pandemic anew (9). Novel research suggests that risk perception is directly correlated with engagement in protective health behaviours during COVID-19 (10). Thus, modelling effective climate risk communications to amplify scientific clarity remains crucial.
Tribalism and scapegoating: When faced with blame, individuals tend to invoke cognitive biases that downplay their own culpability and scapegoat others (11).
As the tragedy of the commons unfolds around environmental issues, some countries refuse to make economically-limiting emissions cuts unless major competitors do the same (12). The concept is tied to moral tribalism: personal, political, and national identity that contribute to discordant perspectives and in-group favouritism. As individuals strain to understand beliefs that conflict with their own, political polarization of climate change threatens beliefs about scientific validity, threat-level, and personal responsibility.
Similar biases are relevant to the COVID-19 pandemic. Public health officials, immigrants, and Asian communities are frequent targets of scapegoating (13, 14, 15). Support for mitigation measures is divided among ideological camps in polarized countries like the USA, reflected in polls (15) and public media. This isolating rhetoric amplifies social divisions and withholds focus from collective responsibility.
Temporospatial separation: A major problem in framing the climate issue is that it is distant, with the most severe impacts befalling not present polluters, but the global poor, future generations, and non-human species. Prosocial moral judgment, still adapted to ancient life in small tribes, favours in-groups rather than psychologically-distant out-groups (16). Certain areas in the social brain activate to a greater extent for proximal individuals, boosting emotional association, empathy, and altruistic motivation. The suffering of distant individuals, including oneself in the future, fails to activate these regions and blunts empathic responses (17). Consequently, many people may believe there is mutual exclusivity between present-day benefits such as socioeconomic development and future-oriented climate change mitigation measures.
This concept drives the largest wedge between the analogy, as COVID-19 is clearly a more short-term phenomenon with visible present-day consequences. However, if the timeline of the pandemic is made relative so that we look at its early stages, it is clear that both crises still present similar challenges. A virus originally localized in East Asia did not elicit countermeasures in countries that had yet to report their first case. One of the main counterarguments against stringent COVID-19 regulations is economic losses, including high unemployment rates. The virus is also sharply unequal in impact. It may be deadly for vulnerable populations, while others may experience little to no symptoms. Systemic inequities exacerbate health inequalities, making certain groups more susceptible to the pandemic, including immigrants, racial minorities, and those of low-socioeconomic status. However, adherence to public health recommendations during the pandemic is partly predicted by pro-sociality towards these aforementioned at-risk populations—highlighting the importance of individual awareness of the collective (18).
The tale of two crises
To avoid the most severe effects of climate change, humanity must reach net carbon neutrality by 2050 (19, 20), requiring rapid, drastic, and systematic changes across societal levels. However, we display an overall apathy towards the economic and lifestyle sacrifices necessary to do so (21).
COVID-19 is a largely different story: lifestyle and economic interests have taken a back-seat to public health. The large part of society is proving itself capable of prioritizing and rapidly adapting to public health measures, sacrificing normal activity like work, school, and social gatherings. There exists a clear priority, one that has led to significant beneficial health outcomes—a study published in Nature (22) estimates that anti-contagion measures averted approximately 495 million infections in China, South Korea, Italy, Iran, France and the United States. Why then, has the world effectively adapted to an infectious disease, but remains unsuccessful in making similar sacrifices for the climate? Perhaps, it is because of the immediate impact of COVID-19 compared to climate change, or the perception that the pandemic is time-limited whereas climate change requires long-term mitigation efforts. While inherent differences make it difficult to distinguish underlying factors, moral judgment may play a central role.
Scientists are addressing these questions in the form of novel research regarding the socio-behavioural motivators of public health adherence. This includes data on prosocial emotions, trust in scientific and governmental institutions, and risk perception (23). By identifying the behavioural factors behind successful public health campaigns, corresponding insights may be drawn for climate mitigation. Altogether, the findings may be consolidated into public communication strategies that translate diffuse challenges into clear mental models that support individual commitment to collective action.
The United Nations Economic Commission for Africa has stated that “COVID-19 lessons offer hope for global efforts to address climate change impacts” (24). Indeed, climate change researchers and communicators alike are recognizing the potential that the COVID-19 pandemic has for providing a template for climate response. This does not entail reframing pandemic response as a precursor for climate change mitigation efforts, but rather clarifying the behavioural motivators underlying successful public health interventions, and connecting these motivators to public communication strategies.
An interdisciplinary approach that combines the knowledge of behavioural scientists, environmental scientists, and communications experts is essential for any effective response to the climate crisis. Policymakers should support behavioural measures, remove structural obstacles to adherence, and promote individual liberties and justice within public ethics strategies.
To echo environmental ethicist Dale Jamieson, the climate problem cannot be solved with only scientific or technological advances. Instead, the solution concerns our values:
It is about how we ought to live, and how humans should relate to each other and to the rest of nature. These are problems of ethics and politics as well as problems of science. (25)
The rapid reaction to the COVID-19 crisis shows that we are more than capable of overcoming psychological roadblocks in order to confront shared challenges. The why behind this outcome is a research gap that we have an ethical obligation to fulfill—for our own sake and that of future generations.
After all, although climate change is much more prolonged a crisis than the current pandemic, it is no less urgent.
Millie Huang is a Research Assistant at Neuroethics Canada. She is a 3rd year student at the University of Pennsylvania, studying Neuroscience and Classics.
Dr. Nir Lipsman (Assistant Professor, Division of Neurosurgery, Department of Surgery, University of Toronto) presented “Hacking the mind: How technology is changing the way we view our brain and ourselves” at the 2021 Brain Awareness Week – Annual Distinguished Neuroethics Lecture, held on March 16, 2021.
Overview: As it advances, our relationship with brain technology will change. In this lecture, Dr. Nir Lipsman will discuss how our knowledge of brain circuitry, and how it can go wrong, has informed our understanding of human behaviour. We will then discuss the implications of more sophisticated, precise and less intrusive brain technology, on that relationship, and what it could all mean for the next generation of brain therapy and beyond…
Bio: Nir Lipsman MD, PhD, FRCSC, is a neurosurgeon and scientist at Sunnybrook Health Sciences Centre and an Assistant Professor of Surgery at the University of Toronto. He completed his undergraduate degree at the University of Toronto followed by a medical degree at Queen’s University, and a neurosurgical residency at the University of Toronto. During his residency, Dr. Lipsman completed his PhD investigating novel neuromodulation strategies in patients with treatment-resistant psychiatric and neurologic conditions. He is currently the Director of Sunnybrook’s Harquail Center for Neuromodulation, and the Clinical Director of Sunnybrook’s Focused Ultrasound Centre of Excellence.
Dr. Lipsman has helped develop several clinical trials of MR-guided focused ultrasound (FUS) in novel indications, including among the world’s first experience of FUS in essential tremor, obsessive-compulsive disorder, major depression and chronic pain, as well as the first randomized control trial of FUS in tremor. He has led the world’s first application of FUS-mediated blood brain barrier (BBB) opening in Alzheimer’s Disease, and helped develop the first applications in primary and secondary brain tumors and ALS. He has published over 100 peer-reviewed papers and book chapters, including in The Lancet, Lancet Neurology, Lancet Psychiatry, New England Journal of Medicine, and Neuron.
Dr. Lipsman also has a strong interest in the broader clinical and ethical implications of neuromodulation, and has been closely involved in the development of international guidelines for the use of surgery in psychiatric disease. In collaboration with Drs. Judy Illes and Pat McDonald at UBC, he helped found the Pan Canadian Neurotechnology Ethics Consortium (PCNEC), bringing together experts in neuromodulation and ethics, to identify and tackle the most pressing ethical questions in the field.
At the most recent Neuroethics Canada Seminar Series, Dr. Nir Lipsman discussed why neurosurgeons should care about ethics and why ethicists should care about neurosurgery.
Bio: Nir Lipsman, MD, PhD, FRCSC is a neurosurgeon and scientist at Sunnybrook Health Sciences Centre and an Assistant Professor of Surgery at the University of Toronto. He completed his undergraduate degree at the University of Toronto followed by a medical degree at Queen’s University, and a neurosurgical residency at the University of Toronto. During his residency, Dr. Lipsman completed his PhD investigating novel neuromodulation strategies in patients with treatment-resistant psychiatric and neurologic conditions. He is currently the Director of Sunnybrook’s Harquail Center for Neuromodulation, and the Clinical Director of Sunnybrook’s Focused Ultrasound Centre of Excellence.
I acknowledge that Neuroethics Canada is situated on the traditional, ancestral, unceded territory of the Musqueam people, and express my thanks as a settler to live, work and study on this territory.
What are the meanings, values, priorities, and responsibilities surrounding equitable and meaningful access to advanced neurotechnologies for diverse populations?
Advanced neurotechnologies are applied in functional neurosurgery: an important class of brain surgery that aims to ameliorate severe neurologic and mental health conditions that do not respond to pharmacological and other therapies. The interventions are broadly classified as neuromodulation, ablation, and resection, and one well known example is deep brain stimulation (see this blog post by Hrincu et al. for applications in pediatric epilepsy). However, alongside rapid advancements in the field of advanced neurotechnologies, there have been reports of disparate access in both Canada and the USA. Five studies have reported racial disparities for African-American populations in the USA (1,2,3,4,5). Reduced access has also been reported for certain provinces and regions in Canada (6,7,8).
Despite the diversity of populations living in both countries and the global availability of these interventions, there has been limited exploration of how various cultural groups may differentially conceptualize and relate to the use of functional neurosurgical interventions.
We consulted with 29 key informants with diverse expertise in Indigenous health and Western medicine about neurotechnologies for diverse geographic and cultural communities (Harding et al., manuscript in preparation). Our analysis of the interviews is revealing that differences in the meanings and perspectives held by patients and physicians about interventions to the brain are significant barriers to receptivity and access. Innovations in telehealth, education, and low maintenance neurotechnologies are significant facilitators to access. Results from a survey we administered at the end of the interviews with medical professionals show a striking contrast between ratings of the imperative of access for people living in rural and remote areas and the realities of such access to neuromodulatory and ablative neurotechnologies across different medical conditions. Median ratings for imperative of access to neuromodulation, for example, were highest for movement disorders (95% rating high imperative), epilepsy (63%) and pain (57%). Higher imperative ratings were strongly associated with ratings of higher likelihood of access.
We also conducted a scoping review of the academic literature about global Indigenous groups’ perspectives about the brain and mind (Harding, Marra, et al., manuscript in preparation). We have found that this body of literature has a significant focus on perspectives about neurological and mental health conditions, with a smaller body of work reporting philosophical conceptualizations of the mind and brain. Holism is a common theme: many studies report perspectives of illnesses as caused by a combination of spiritual, psychological and biological factors.
For our next step, we will bring together expertise in Indigenous health and neuroethics for a series of sequential workshops to explore meanings and values for brain wellness. While the idea of hosting these working sessions by videoconference would have been previously inconceivable, in this era of COVID-19 Indigenous communities have developed innovative approaches to uphold cultural protocols in virtual spaces (Harding et al., 2020). Applying a transformative framework, we will collaborate with Indigenous scholars, knowledge holders, and healthcare providers through consensus-seeking and collaborative writings to co-create and deliver strategic recommendations for community-based and systems-based prioritization of neurotechnology for brain health, education, and consultation.
Through the efforts of this ongoing, spiral, community-engaged research project, we will provide recommendations and strategic partnerships for the inclusion of ethical, practical, and cultural domains in the development and delivery of advanced neurotechnologies to mitigate disparities and realize the goal of improving brain wellness.
The work discussed in this article is being conducted at Neuroethics Canada under the leadership of Dr. Judy Illes. I thank collaborators Dr. Christopher R. Honey, Dr. Patrick J. McDonald, Dr. Malcolm King, Caterina Marra, Jacob McFarlane and Vyshu Manohara, as well as other members of the Neuroethics Canada team. This work is supported by the National Institutes of Health (J. Iles; Grant number [RF1#MH117805 01]), the North Growth Foundation (J. Iles), and the Canadian Brain Research Strategy (J. Iles).
Louise Harding is a MSc student in Population and Public Health at the University of British Columbia and a Research Assistant at Neuroethics Canada. She holds a BSc in Psychology with a minor in First Nations and Indigenous Studies from UBC.