Centering persons with lived experience in brain health technology research

What is the role of the persons with lived experience in research?

Researchers and research organizations in Canada are changing the way that they think about the role of persons with lived experience in research. There is a shift away from thinking about these groups as passive sources of data and towards meaningful collaboration with them at all stages of research (1). This can involve working collectively to set research priorities, select research designs, and interpret and share research findings. There are large potential benefits, even above and beyond the ethical imperative of “nothing about us without us”. Patient engagement in research can result in work that is better aligned with the actual goals of the population under study as well as improving study enrollment and decreasing participant drop-out (2). There are also potential benefits of the collaborative process for participants themselves. In one study, grandparents who acted as research advisors reported that the experience provided a sense of purpose and a feeling of connection (3). However, prioritizing a collaborative research approach does present unique challenges. It takes time and resources, there are a wide range of methodologies and large differences in how engagement is accomplished between research groups, and there is a potential for “tokenization”, which is the appearance of inclusiveness in the absence of true collaboration.

Incorporating patient engagement practices specifically in the technology research and development space has some unique additional challenges. Emerging technologies may not yet be ready for real-world deployment at the point of care, but engaging persons with lived experience in their early development is critical. It can be difficult to know how to ask participants the best way to study a set of devices that are still under development and part of a quickly-changing commercial landscape! For this reason, pathways to involve persons with lived experience in healthcare technology research are not yet well established.

The need to engage persons with lived experience in social robotics research

One example of a potential health technology that our group would like to study in a patient-centered way is social robotics. These interactive devices are intended to be effective social partners for a person. Their functions can include acting as a fun and entertaining companion, acting as a virtual assistant (e.g., setting up video calls, using the internet to answer questions), providing reminders to take medication, and monitoring the user for events like a fall, among other things. They are being trialled for applications like supporting children’s mental health, as supports for individuals for Autism Spectrum Disorder, and as companions for persons living with dementia (4-8). The COVID-19 pandemic is likely to further accelerate the adoption of social robotics as people seek to reduce live human contact without reducing social connectedness (9).

However, social robotics development priorities are largely driven by the market, engineering constraints, and the recommendations of healthcare experts, rather than by input from persons with lived experience (10). While technically advanced devices are coming to market and manufacturers are making strong claims about the usefulness of these objects, scientific evaluation of these claims is of poor quality and does not focus on the experiences and outcomes that are important to potential users and their families. Not including the voices of potential users can lead to the development of devices that ultimately fail to meet their needs.

Engagement at Neuroethics Canada: Lived Experience Expert Groups

Our research group is currently running a set of projects looking at robotic interventions for anxiety in children and teens. To engage members of these groups directly, we have developed a Lived Experience Expert Group (“LEEG” – we call this group our “League”) to advise on all aspects of our ongoing work on social robotics for children. The group includes a mix of children, teens, and parents/guardians with lived experiences of acute and chronic anxiety and a range of ages and diagnostic groups (e.g., social anxiety, generalized anxiety disorder). Involving young people themselves in patient experience research is critical as their reports on the quality of an interaction can differ from those of adults – even from their parents’ reports of the same event (11, 12). Involving an expert group, rather than a single token lived experience partner, tips the balance of our research team towards individuals with lived experience and away from researchers, as well as promoting a diversity of voices in the work. We are excited to work with the League to refine our research questions, design smart studies, and learn more about the experiences and priorities of young people living with anxiety.

This work is supported by BC Support Unit, the BC Children’s Hospital, and the Michael Smith Foundation for Health Research and is being done under the supervision of Dr. Julie Robillard, with team members Anna Riminchan, Jaya Kailley, Kat Kabacińska, and our generous persons with lived experience partners. 

References

  1. Robillard JK, Jordan I. Dialogue? Yes. Burden? No. Ethical challenges in engaging people with lived experience in health care research. Brainstorm, 32-35.
  2. Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin P. Patient engagement in research: a systematic review. BMC health services research. 2014 Dec;14(1):1-9.
  3. Sheehan OC, Ritchie CS, Garrett SB, Harrison KL, Mickler A, AL EE, Garrigues SK, Leff B. Unanticipated Therapeutic Value of the Patient-Centered Outcomes Research Institute (PCORI) Stakeholder Engagement Project for Homebound Older Adults. Journal of the American Medical Directors Association. 2020 May 4;21(8):1172-3.
  4. Costescu CA, David DO. Attitudes toward Using Social Robots in Psychotherapy. Transylvanian Journal of Psychology. 2014 Mar 1;15(1).
  5. Dawe J, Sutherland C, Barco A, Broadbent E. Can social robots help children in healthcare contexts? A scoping review. BMJ paediatrics open. 2019;3(1).
  6. Hung L, Liu C, Woldum E, Au-Yeung A, Berndt A, Wallsworth C, Horne N, Gregorio M, Mann J, Chaudhury H. The benefits of and barriers to using a social robot PARO in care settings: a scoping review. BMC geriatrics. 2019 Dec;19(1):1-0.
  7. Kabacińska K, Prescott TJ, Robillard JM. Socially assistive robots as mental health interventions for children: a scoping review. International Journal of Social Robotics. 2021 Aug;13(5):919-35.
  8. Pennisi P, Tonacci A, Tartarisco G, Billeci L, Ruta L, Gangemi S, Pioggia G. Autism and social robotics: A systematic review. Autism Research. 2016 Feb;9(2):165-83.
  9. Ghafurian M, Ellard C, Dautenhahn K. Social companion robots to reduce isolation: A perception change due to COVID-19. In IFIP Conference on Human-Computer Interaction 2021 Aug 30 (pp. 43-63). Springer, Cham.
  10. Riek LD. Robotics technology in mental health care. In Artificial intelligence in behavioral and mental health care 2016 Jan 1 (pp. 185-203). Academic Press.
  11. Hargreaves DS, Sizmur S, Pitchforth J, Tallett A, Toomey SL, Hopwood B, Schuster MA, Viner RM. Children and young people’s versus parents’ responses in an English national inpatient survey. Archives of disease in childhood. 2018 May 1;103(5):486-91.
  12. Kerr C, Nixon A, Angalakuditi M. The impact of epilepsy on children and adult patients’ lives: development of a conceptual model from qualitative literature. Seizure. 2011 Dec 1;20(10):764-74.

On COVID-19: Exploring the Experiences of the Dementia Community during the Pandemic

This blog post discusses some of the key findings from the article “The Impact of a Global Pandemic on People Living with Dementia and their Care Partners: Analysis of 417 Lived Experience Reports , paper here).

It is without question that the COVID-19 pandemic has greatly impacted our daily lives. From new health policies to months being on lockdown, we have had to adapt to the rapidly changing circumstances within the last year and a half. Remember when every day necessities were becoming scarce and the difficulty in trying to find a roll of toilet paper? More importantly, as the pandemic progressed, there were increased concerns surrounding available hospital beds and ventilators [1,2] and the allocation of resources including vaccines and therapies to combat the virus [2,3]. While the entire world has had a handful of shared experiences, some have been more vulnerable to the virus and the regulations set in place. 

During the earlier days of the pandemic, we learned that older adults were at a higher risk of contracting the virus, especially those living in long-term care facilities, including people living with dementia. They were restricted from going out, attending regular health care services, receiving home support, or accessing community supports and social networks. Families and care partners also had difficulties in caring for their loved ones, as some were unable to physically visit them in a long-term care home. As this continues to be an unprecedented time, it is important to understand the experiences and needs of the dementia community.

What we did

With an ongoing collaboration with the Alzheimer Society of British Columbia, we at the Neuroscience, Engagement, and Smart Technology (NEST) Lab developed a survey to explore the lived experiences of people living with dementia and their care partners during the pandemic. In this survey, we touched on four different themes including (1) information and resource needs, (2) caring for someone living with dementia during the COVID-19 pandemic, (3) mental health and well-being needs, and (4) the use of technology for social connection during the pandemic. We distributed the survey between June and August 2020 and received 417 responses (395 care partners and 22 people living with dementia).

What we found

Information and resource needs

Figure 1 shows the locations from which our participants were receiving their information about COVID-19. With so many sources of information during the pandemic, our participants found that the information they accessed were helpful in terms of maintaining their own health (74% of care partners, 86% people living with dementia) and a period of social distancing (70%, 77%). They found that the information they accessed was either somewhat or very stressful (29%, 23%), neither stressful or reassuring (23%, 23%), or somewhat or very reassuring (48%, 54%). In terms of needs, care partners wished to have learned more about care options including long-term care and respite care, while people living with dementia wanted to learn more about self-care during the pandemic. 

Figure 1. “Where have you been receiving information about the COVID-19 pandemic?”

Caring for someone living with dementia

The focus of this section in our survey was to identify the main concerns of care partners during the pandemic. While there was concern for every care partner scenario described in the survey, the five major concerns were having more responsibilities as a care partner, access to therapy and/or a vaccine for COVID-19 in the future, having the person they care for be infected with COVID-19, the person that they care for having difficulty understanding COVID-19 and the health regulations set in place, and having themselves be infected with COVID-19. Figure 2 presents other areas of concern for these care partners.

Figure 2. Care partner concerns.

Mental health and well-being 

An increased period of social distancing and being on lockdown affected the mental health and well-being of those living with dementia and their care partners. People living with dementia were restricted in their home, not being able to go out to get groceries, attend regular health care services, or even access community supports. With this in mind, we uncovered that the pandemic had increased our participants’ stress overall (58%, 62%), and they had felt left out (63%, 81%), isolated (74%, 81%), and lacked companionship (70%, 76%). To manage this stress and maintain their well-being, participants said that they spent time talking to friends and family, walking around the neighbourhood, watching television, and engaged in household activities. 

Technology and social connection

As many in-person activities were suspended and some transitioned to a virtual setting, we were interested in whether people living with dementia and their care partners were utilizing technology for social connection. Even though there were increased feelings of isolation and lack of companionship during the pandemic, our participants were able to socialize and connect with others through a cell phone/smartphone, on devices such as laptops and tablets, as well as home phones. However, only 19% of care partners and 36% of people living with dementia felt that using technology to connect with others felt the same as interacting with them in person. There is something to be said about the quality and impact of having in-person interactions and the impact it can have on one’s mental well-being. 

What now?

Our survey took the opportunity during a challenging time to explore the real life experiences of people living with dementia and their families and care partners. With this, we were able to identify some actionable priorities for services such as those provided by the Alzheimer Society of B.C. to better support the dementia community during a pandemic. Since the publication of our results, the Alzheimer Society of B.C. already implemented some of the suggestions and findings in their service delivery. Moving forward, there will be plans to implement long-term changes to address the needs of this community and to better manage the care for older adults and people living with dementia. 

The authors of this work were Mallorie Tam, Dr. Jill Dosso, and Dr. Julie Robillard. Special acknowledgement to the Alzheimer Society of B.C. for their support and collaboration on the project. 

Press coverage of the study: https://vancouversun.com/health/seniors/people-with-dementia-experienced-more-stress-loneliness-during-covid-19-says-ubc-study

References

  1. Emanuel EJ, Persad G, Upshur R, Thome B, Parker M, Glickman A, Zhang C, Boyle C, Smith M, Phillips JP (2020) Fair allocation of scarce medical resources in the time of Covid-19. N Engl J Med 382, 2049–2055.
  2. Smith EE, Couillard P, Fisk JD, Ismail Z, Montero-Odasso M, Robillard JM, Vedel I, Sivananthan S, Gauthier S (2020) Pandemic dementia scarce resource allocation. Can Geriatr J 23, 216-218.
  3. Neurology Today, COVID-19: Prepare for Care-Rationing—Know Your Hospital Policies, https://journals.lww.com/neurotodayonline/blog/breakingnews/pages/post.aspx?PostID=932, Last updated April 8, 2020, Accessed July 21, 2020.

Neuroethical Dilemmas of Pager the Monkey’s Neuralink Brain Implant: Age-Old Ethics for New-Age Artificial Intelligence

Post by Stephanie Quon

In April 2021, Neuralink released a video of Pager, a macaque monkey, playing a computer pong game with their brain [1]. The N1 Link, a fully-implanted neural recording and data transmission device with 1024 electrodes, allowed Pager to play pong by using patterns of their neural activity to model the movements of a computer cursor [2]. There are many ethical considerations associated with brain-computer interfaces and their use with animals, such as physical harm and psychological distress [3]. Here, we will focus more generally on the ethical challenges of the brain-computer interfaces Neuralink is developing and the global attention that Pager has drawn to neuroethics.

Elon Musk founded Neuralink in 2016 with the mission of merging humanity with artificial intelligence. Neuralink aims to achieve this through designing and building wireless, implantable brain-computer interfaces to help improve treatments for neurological conditions such as Alzheimer’s disease and dementia [4]. As shown by Pager’s ability to play a game using their mind only, Neuralink is quickly progressing closer to its goal of enhancing brain function by integrating artificial processing [4].

The ongoing development of neurotechnology is pulling some key neuroethics topics into the limelight [5]. As Neuralink’s video of Pager gained popularity online, more and more individuals began expressing interest in the potential implications of neurotechnology [3]. On social media platforms, people are engaging in neuroethics-related discussion threads [6], bringing increased attention and perspectives to topics often discussed in the field. Examples of topics include data privacy concerns, safety issues, and considerations around how brain technology may influence behaviour [5].

Renewed public interest in the ethical challenges of these technologies stresses the importance of ethical and socially responsible research and development [5]. One key ethical consideration is the tradeoff between potential benefits and adverse effects of neural implant devices. As the use of neurotechnology may move from remediation to enhancement in the future, this risk-benefit calculation may become more complicated and must be further scrutinized [7].

The use of brain-computer interfaces also raises questions about who owns an individual’s brain data. Important issues include who has the right to write data to implanted devices and how developers can ensure privacy and security during the use of their devices [7]. Whether or not BCIs can be developed to enhance what a person can achieve, there are already concerns around how social equity and access will continue to be impacted. Further developments will likely continue to exacerbate health inequalities, making these questions even more important to answer [3].

In the future, brain-computer interfaces may transform approaches to treating neurological conditions and even move to performance enhancement. It has been suggested that the success of these technologies may depend on multiple factors [7]. These components may include the willingness of innovators to prioritize ethical innovation drawn from interdisciplinary expertise [7], and regulations and policies that prioritize individual and societal wellbeing.

References

  1. Monkey MindPong. Available at: http://www.youtube.com/watch?v=rsCul1sp4hQ. Accessed May 2, 2021.
  • Coin A., Mulder M., Dubljevic V. Ethical Aspects of BCI Technology: What Is the State of the Art? Philosophies 2020-09-25; 5 (31); doi:10.3390/philosophies5040031. Accessed July 27, 2021.
  • Breakthrough Technology for the Brain. Available at: neuralink.com. Accessed May 2, 2021.
  • Maynard A. D., Scragg M. The Ethical and Responsible Development and Application of Advanced Brain Machine Interfaces. Journal of Medical Internet Research 2019-10-31; 21(10): e16321. Accessed May 3, 2021.

Incorporating Patient Voices into Patient Care

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).

Figure 1. An Illustration of the communication gap between healthcare research and patients.

Readability

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.

Understandability

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.

Usefulness

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. 

What’s Next?

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.


References:

  1. 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.
  2. Weiss BD. Health literacy and patient safety: Help patients understand. Manual for clinicians. American Medical Association Foundation; 2007.
  3. 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.
  4. 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.
  5. 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.
  6. J.M. Robillard, A.B. Sporn (2018). Static versus interactive online resources about dementia: A comparison of readability scores. Gerontechnology, 17(1), 29-37.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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
  14. 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.
  15. 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).
  16. 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.
  17. Canadian Council on Learning. Health literacy in Canada: a healthy understanding [internet], Ottawa: Canadian Council on Learning; 2008. Available from: http://www.en.copian.ca/library/research/ccl/health/health.pdf
  18. Davis TC, Williams MV, Marin E, Parker RM, Glass J. Health literacy and cancer communication. CA: a cancer journal for clinicians. 2002 May;52(3):134-49.
  19. Kindig DA, Panzer AM, Nielsen-Bohlman L. Health literacy: a prescription to end confusion. 1st ed. Washington D.C.: National Academies Press; 2004.


A Two-Component Ethics Approach for Triage to Epilepsy Monitoring Units

Jason Randhawa, MD
Neuroethics Canada Blog


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.

Lessons from the pandemic about our brain, climate change, and collective responsibility

Millie Huang
Neuroethics Canada Blog


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.

Psychological factors

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.

Fig. 1. A visualization of exponential growth bias. Source: M. Huang 2021©

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.

Conclusion

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.

2021 Brain Awareness Week Annual Distinguished Neuroethics Lecture

Hacking the Mind: How Technology Is Changing The Way We View Our Brain and Ourselves
Nir Lipsman, MD, PhD, FRCSC, Assistant Professor, Division of Neurosurgery, Department of Surgery, University of Toronto

Tuesday, March 16, 2021
4:00 PM – 5:00 PM PDT
For the Zoom details, please RSVP here: https://baw2021.eventbrite.ca

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…

Nir Lipsman MD, PhD, FRCSC
Dr. Nir Lipsman 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.

Wicked Health Challenge Dialogues: COVID19 Edition – What lies ahead?

The Morris J. Wosk Centre for Dialogue and Neuroethics Canada are pleased to invite you to

WICKED HEALTH CHALLENGE DIALOGUES
COVID19 Edition: What lies ahead?

Tuesday, June 2, 2020
1:00 PM – 2:30 PM
Register here: https://bit.ly/2X4wm1y

Are you wondering what response and recovery looks like for a pandemic? How complex are the problems that lie ahead, and why does that matter?

Join us over Zoom as we discuss what response and recovery of our collective health and wellness looks like for COVID-19. We hope to deepen our collective understanding of the complexity of this challenge and consider what that means for collective action.

FEATURING:
Dr. Judy Illes
Professor and Director, Neuroethics Canada
University of British Columbia

Dr. Bruce Y. Lee
Professor, Health Policy & Management
City University of New York

Mr. Donald MacPherson
Director, Canadian Drug Policy Coalition
Simon Fraser University

Dr. Farah N. Mawani
Post-doctoral Fellow, MAP Centre for Urban Health Solutions
St. Michael’s Hospital, Toronto

MODERATED BY:
Dr. Diane T. Finegood
Professor and Fellow, Morris J. Wosk Centre for Dialogue
Simon Fraser University

“Modulating the Mind” – Dr. Judy Illes at TEDx Abbotsford

Neuroethics Canada’s Dr. Judy Illes was invited to speak at the TEDx Abbotsford in November 2019.

We are pleased to share that you may now watch her presentation!

In her TEDx talk, Dr. Illes discussed how how people think about brain surgery for neurologic and psychiatric conditions, including ethical concerns about hope versus hype, rights, justice, agency, and personal privacy.

 

The Importance of Global Co-operation: A Statement on COVID-19 from Neuroethics Canada

Featured

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.

NeuroethicsCanada COVID19 Statement nws