Join us forEthics in Environment & Democracy, the final installation of Ethics for UBC, a five-part speaker series that will explore the current landscape of ethics scholarship and education across the Vancouver and Okanagan campuses of our university.
In attending this interactive 75-min panel discussion, you will have the opportunity to learn about the current ethics-related endeavours taking place at UBC, pressing ethical issues that exist across a wide range of disciplines, and the ways in which you can become more involved.
This panel discussion will focus on ethics across a variety of disciplines, from animal welfare and ecophysiology, to democracy and ecofeminism.
Join us forEthics in Health, the fourth installation of Ethics for UBC, a five-part speaker series that will explore the current landscape of ethics scholarship and education across the Vancouver and Okanagan campuses of our university.
In attending this interactive 75-min panel discussion, you will have the opportunity to learn about the current ethics-related endeavours taking place at UBC, pressing ethical issues that exist across a wide range of disciplines, and the ways in which you can become more involved.
This panel discussion will focus on ethics across a variety of disciplines, spanning kinesiology and the exercise sciences, neuroethics, and medicine.
Recently Quinn Boyle and Drs. Paul van Donkelaar and Judy Illes (1), who are affiliated with Neuroethics Canada, wrote about neuroethics methodology for the Encyclopedia of Behavioral Neuroscience. In this piece, they briefly discuss the use of sharing circles in neuroethics research. Here, I will attempt to deepen that overview by summarizing a few key sources that have described sharing circle methodologies, by exploring how this method can be utilized in research in a culturally safe way, and by uncovering future directions for use in neuroethics. I enter this topic as a non-Indigenous settler with experience participating in numerous sharing circles led by Indigenous Elders on topics of health and educational equity.
In response to concerns surrounding extractive research methodologies, and to recognize a need for the decolonization and Indigenization of many research projects, particularly those involving Indigenous peoples and communities, seminal Indigenous scholars such as Margaret Kovach (2) have asserted the “need to take back control of research so that it is relevant and useful” (p. 59). One way by which culturally-conscious scholars have attempted to utilize research methodology in a way that is relevant and useful is through the sharing circle method, a traditional practice used by Indigenous groups across the world (3,4). A cross-database search, absent a test for duplicate results, for the terms “sharing circle” and “talking circle” retrieved several hundred results, emphasizing the range of qualitative work that utilizes this methodological approach. Results revealed studies spanning the humanities, social sciences, and health sciences in a variety of disciplines. Sharing circle methodology is especially prominent in studies that attempt to gather and highlight the lived experiences of communities, groups, and study participants.
Sharing circles (Figure 1), also referred to as talking circles, peacemaking circles, or healing circles, are conversationally-driven and hold space for storytelling (3). Moreover, sharing circles, as Tachine et al. (3) point out, are a cultural practice and research methodology familiar to the Māori people of New Zealand. Likewise, sharing circles, which Margaret Kovach (5) describes as being a space in which “the story breathes and the narrator regulates” (p. 99), are used by Indigenous groups in North America such as the Cree people of Canada. As such, the widespread use of and familiarity with sharing circles can make this method viable and culturally safe for research with Indigenous populations in a variety of contexts. That said, given the traditional value of this sharing circles to Indigenous communities worldwide, research that utilizes sharing circles is best led for and by Indigenous peoples.
Sharing circles differ in several key ways from interviews and focus groups. As Tachine et al. (3) assert, there are three primary features of focus groups: data collection, discussion, and the instrumentality of the facilitator (3). In a focus group, the facilitator holds the power; they take the conversation where they wish. Moreover, focus groups are usually short in timespan, ranging from approximately 45 minutes to 1.5 hours (3). As Tachine et al. (3) point out, focus groups can silence individual voices, lead to nondisclosure of personal stories, and inhibit the generation of new narratives. On the contrary, Tachine et al. (3) describe sharing circles as a place where stories thrive through reverence to cultural practices and solidarity between participants. Moreover, in a sharing circle, all participants, including the facilitator, are seen as equal (6). In a sharing circle, the facilitator is known as a circle keeper and facilitates the community protocols (7). Protocols can include leading opening or closing ceremonies, and ensuring the space is safe (7).
Describing the sharing circle methodology by way of poetic narrative, education and social work scholar Fyre Jean Graveline (8)—who is of Métis (Cree) ancestry—outlines the basic guiding principles and requirements of sharing circles (Figure 1). First, sharing circles require explicit modeling and clear intentions (8 p. 365). Second, sharing circles should allow and guide participants to traditional Indigenous philosophies and practices (8 p. 365). Third, in keeping with Hart’s work, Graveline (8) argues that sharing circles should foster solidarity among participants in addition to individual reflexivity. Fourth, mirroring the observations of Tachine et al. (3), Graveline (8) points out the time requirements of sharing circles; a process not to be rushed.
In sum, literature highlights that, more than just a space to share, sharing circles provide an environment for reflexive listening, cultural continuity, and community-building. For example, work by sociologist Steven Picou (4) found that talking circles provided an avenue for Alaskan Natives to mitigate the social impacts of the 1989 Exxon Valdez oil spill. In another study, Waddell et al. (9) utilized a sharing circle approach to better understand resources and barriers to mental wellness for Indigenous men. Similarly, a 2020 study by Baldwin et al. (10) utilized a talking circle approach to adapt, implement, and evaluate substance use interventions in three tribes within the United States. Likewise, a study by Greene et al. (11) gathered the experiences of Indigenous women living with HIV through a weekend retreat that culminated in a 3-hour sharing circle which was co-attended by an Elder who offered spiritual and emotional support.
As the above examples highlight, sharing circles can be a culturally relevant and culturally safe way by which to undertake research with Indigenous peoples and communities. In neuroethics research, this method could be utilized in a meaningful and intentional way in the place of focus groups or interviews to advance cultural safety in conversations surrounding neuroethics with Indigenous populations.
Bio: Miles Schaffrick (he/him) is a fourth-year undergraduate student in UBC’s Honours Political Science program as well as the Law & Society minor. Miles’ primary research interests lie in the rapidly developing field of health politics. As such, Miles’ research broadly examines how political actors and institutions influence topics of significance to health. As a settler of German and Austrian ancestry with a background and interest in Indigenous health, Miles supports Neuroethics Canada’s Indigenous research initiatives.
2. Kovach M. Emerging from the margins: Indigenous methodologies. In Strega S, Brown L (eds.) Research as resistance: Revisiting critical, Indigenous, and anti-oppressive approaches. Toronto, Ontario, Canada: Canadian Scholar’s Press; 2015. p. 43–64
3. Tachine AR, Bird EY, Cabrera NL. (2016). Sharing circles: An Indigenous methodological approach for researching with groups of Indigenous Peoples. International Review of Qualitative Research. 2016;9: 277–295. Available from: https://www.jstor.org/stable/26372209 [Accessed 27th December 2021].
4. Picou JS. The “talking circle” as sociological practice: Cultural transformation of chronic disaster impacts. Sociological Practice. 2000;2(2): 77–97. Available from: http://www.jstor.org/stable/43735710 [Accessed 27th December 2021].
5. Kovach M. Story as Indigenous methodology. In M. Kovach Indigenous methodologies: Characteristics, conversations, and contexts. University of Toronto Press; 2009. p. 94–108
6. Lavallée LF. Practical application of an Indigenous research framework and two qualitative Indigenous research methods: Sharing Circles and Anishnaabe symbol-based reflection. International Journal of Qualitative Methods. 2009;8(1): 21–40. Available from: https://doi.org/10.1177/160940690900800103 [Accessed 27th December 2021].
7. Carr T, Sedgewick JR, Roberts R, Groot G. The sharing circle method: Understanding Indigenous cancer stories. SAGE Research Methods Cases: Medicine and Health. 2020. Available from: https://dx.doi.org/10.4135/9781529711264 [Accessed 27th December 2021].
8. Graveline FJ. Circle as methodology: Enacting an Aboriginal paradigm. International Journal of Qualitative Studies in Education. 2000;13(4): 361–370. Available from: https://doi.org/10.1080/095183900413304 [Accessed 27th December 2021].
9. Waddell CM, de Jager MD, Gobeil J, Tacan F, Herron RV, Allan JA, et al. Healing journeys: Indigenous Men’s reflections on resources and barriers to mental wellness. Social Science & Medicine. 2021;270: 113696–8. Available from: https://doi.org/10.1016/j.socscimed.2021.113696 [Accessed 27th December 2021].
10. Baldwin JA, Lowe J, Brooks J, Charbonneau-Dahlen BK, Lawrence G, Johnson-Jennings M, et al. Formative research and cultural tailoring of a substance abuse prevention program for American Indian youth: Findings from the intertribal talking circle intervention. Health Promotion Practice. 2020;22(6): 778-785. Available from: https://doi.org/10.1177/1524839920918551 [Accessed 27th December 2021].
11. Greene S, O’Brien-Teengs D, Whitebird W, Ion A. How Positive Aboriginal Women (PAW) living with HIV talk about their mothering experiences with Child and Family 5 Services in Ontario. Journal of Public Child Welfare. 2014;8(5): 467-490. Available from: https://doi.org/10.1080/15548732.2014.948253 [Accessed 27th December 2021].
Consumer demand for social robots is increasing, particularly in response to the reduced amounts of social contact children that are getting because of school closures (1). Isolation due to the COVID-19 pandemic has accelerated people’s need for social interaction. Social robots have the ability to listen, emote, and sustain a verbal, or non-verbal conversation with others without spreading disease, making them an increasingly relevant solution to today’s problems. However, it is important to balance the growing excitement for social robots with a careful examination of the ethical issues they raise.
Socially assistive robots are devices intended to provide companionship, education, and healthcare assistance for diverse populations. Current research centers around the use of social robots for ageing populations and children. Social robots’ child-specific uses include support during hospitalization (2,3), support for distress during medical procedures (4), mitigation of the effects of a short-term stressor (5), intervention to improve social skills in children with autism spectrum disorder (6,7), and enhancement of education in the classroom (8).
In order to qualify as a social robot, a device must possess three elements: sensors to detect information, a physical form with actuators to manipulate the environment, and an interface that is able to interact with humans on a social level (9). Social robots’ interactions with humans also follow four key rules; (1) social robots have a physical presence, (2) social robots can flexibly react to novel events, (3) social robots are equipped to realize complex goals, and (4) social robots are capable of social interaction with humans in pursuit of their goals (definition adapted from 10).
Today’s social robotics scene contains robots that are available for research purposes as well as some that are sold commercially to children around the world. The present article will present examples of both types of social robots currently being used.
Huggable is a blue and green, bear-shaped social robot created by MIT Media Lab in collaboration with Boston Children’s Hospital. An image of Huggable from MIT Media Lab’s website is shown. Its goal is to bridge the socio-emotional gap between child and parent stress and human resource supply in pediatric hospitals. Huggable wants to close this gap with its ability to “mitigate stress, anxiety, and pain in pediatric patients by engaging them in playful interactions”, as advertised on its website. It is meant to enhance social interactions between children and their teachers or healthcare providers through its fun communication abilities.
Research with Huggable also touched on the importance of the physical embodiment aspect of social robot interaction. An experiment was performed with children to compare the effects of the Huggable robot to a virtual character on a screen and a regular plush teddy bear. They showed that children are “more eager to emotionally connect with and be physically activated by a robot than a virtual character”(11). This is one of the first studies in 2012 to demonstrate the potential of social robots as opposed to other types of pediatric interventions.
In terms of commercially available robots, Moxie is one of the newest social robots on the market. A picture of Moxie from the Embodied Inc’s website is included. Her teal colour, and animatronic face, as well as her teardrop-shaped head, give her a unique, yet modern look. According to the manufacturer’s website, Moxie is designed to “help autistic children learn the necessary social skills they need to thrive in the world and to provide them with understanding and engaging company.” Moxie is about 1500$ with a 40$ a monthly subscription after the first year of adoption. A highly expressive social robot, with an emotive electronic face, Moxie is designed to have large eyes, to promote eye contact in children. She presents the child with weekly missions to encourage learning and exploration of different topics related to human experiences, ideas, and life skills like kindness, empathy, and friendship. Guided meditations and breathing exercises can help children regulate their emotions and develop their self-expression in a positive way. The manufacturer’s website claims that children can read to Moxie to build confidence in their verbal ability and increase comprehension. Unstructured play can also help promote creativity and self-reflection. The website includes a page entitled “ The Science Behind Moxie”, which supports some claims made by manufacturers on Moxie’s abilities with other social robot studies. However, the only formal data available on Moxie’s effectiveness comes from a short, preliminary study done by the manufacturers, featuring a very small sample size. Although more research is needed on her effects on children, Moxie is a promising social robot for at-home use!
Researchers and manufacturers alike are continuing to acknowledge the growing potential of social robots for child wellbeing. With possible benefits like decreasing distress during hospitalization (2,3,4), enhancing interactions with others (6,7), and helping to promote healthy emotional regulation in response to stress (5), social robots have a unique set of capabilities to enhance children’s lives. However, more research is needed to establish the effectiveness of specific commercial social robots before manufacturers can soundly claim the benefits of well-researched robots as pertaining to their own product. Furthermore, the security of sensitive information a user shares with a social robot is currently evolving as consumers become more aware of ethical issues surrounding data privacy. Concerns about data security and sharing are being addressed by some, but not all social robot manufacturers. Of those which address data privacy, many statements are brief, and do not offer the consumer enough to make a fully informed, consenting decision on sharing their personal information. This information comes from an analysis performed in our yet unpublished paper, which addresses the greatly variable quality of claims made by social robot manufacturers. Although social robots show great potential for enhancing child well-being, further consideration of ethical issues, as well as re-evaluation of the quality of claims made by manufacturers is needed to enhance consumer’s experiences.
Anna Riminchan was born in Bulgaria, where she spent her early childhood before immigrating to Canada with her family. Anna is currently working towards a Bachelor of Science Degree, majoring in Behavioural Neuroscience and minoring in Visual Arts at the University of British Columbia. In the meantime, she is contributing to advancing research in neuroscience, after which, she plans to pursue a degree in medicine. In her spare time, you can find Anna working on her latest art piece!
2. Farrier CE, Pearson JD, Beran TN. Children’s fear and pain during medical procedures: A quality improvement study with a humanoid robot. Canadian Journal of Nursing Research. 2020 Dec;52(4):328-34.
3. Okita SY. Self–Other’s Perspective Taking: The use of therapeutic robot companions as social agents for reducing pain and anxiety in pediatric patients. Cyberpsychology, Behavior, and Social Networking. 2013 Jun 1;16(6):436-41.
4. Trost MJ, Ford AR, Kysh L, Gold JI, Matarić M. Socially assistive robots for helping pediatric distress and pain: a review of current evidence and recommendations for future research and practice. The Clinical journal of pain. 2019 May;35(5):451.
5. Crossman MK, Kazdin AE, Kitt ER. The influence of a socially assistive robot on mood, anxiety, and arousal in children. Professional Psychology: Research and Practice. 2018 Feb;49(1):48.
6. Diehl JJ, Schmitt LM, Villano M, Crowell CR. The clinical use of robots for individuals with autism spectrum disorders: A critical review. Research in autism spectrum disorders. 2012 Jan 1;6(1):249-62.
7. 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.
8. Belpaeme T, Kennedy J, Ramachandran A, Scassellati B, Tanaka F. Social robots for education: A review. Science robotics. 2018 Aug 15;3(21).
9. del Moral S, Pardo D, Angulo C. Social robot paradigms: An overview. In International Work-Conference on Artificial Neural Networks 2009 Jun 10 (pp. 773-780). Springer, Berlin, Heidelberg.
10. Duffy BR, Rooney C, O’Hare GM, O’Donoghue R. What is a social robot? In10th Irish Conference on Artificial Intelligence & Cognitive Science, University College Cork, Ireland, 1-3 September, 1999. 1999 Sep 1.
11. Jeong S, Breazeal C, Logan D, Weinstock P. Huggable: the Impact of Embodiment on Promoting Socio-Emotional Interactions for Young Pediatric Inpatients. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems 2018 Apr;21:1-13.
One in three women will experience intimate partner violence (IPV) in their lifetime. Up to 92% of these women will also suffer a brain injury (BI) at the hands of a partner (1,2). To put this in a Canadian perspective, for every 1 NHL player that suffers a concussion, 5,500 Canadian women suffer the same injury due to IPV. It is with these statistics in mind that research teams such as the SOAR project (Supporting Survivors of Abuse and Brain Injury through Research) have been assembled to better understand, characterize, and manage the urgent crisis that is intimate partner violence-related brain injury (IPV-BI).
A major pillar of scientific and clinical interest in IPV-BI research is designing and implementing BI screening tools specific to IPV. Although research teams approach this topic with the intent of better understanding IPV-BI, improving BI diagnostic science, and designing intervention strategies tailored to IPV-BI, careful consideration must be taken to ensure that providing BI screening information will not harm patients in other areas of their lives. To justify any health screening, two criterion must be met: 1) the presence of sufficient risk of a positive result (in other words, the likelihood of a positive result must be deemed significant); and 2) the availability of an evidence-based validated treatment or intervention in the event of a positive result (3–5). Despite these concerns, when limiting perspective to a healthcare silo, the benefits of screening for IPV-BI seem to outweigh the concerns. However, the impacts of screening for IPV-BI outside of the healthcare context must also be considered. Through applying an intersectional lens, which considers the intersection of social categories such as race, gender, class, and other characteristics of marginalization, we recognize the wide-ranging experiences of survivors of IPV and acknowledge we have a responsibility to ensure BI information in other contexts does no harm. Specific to women who have experienced IPV-BI, the legal implications of BI screening information are of particular concern.
My master’s thesis examined the ethico-legal considerations of screening for BI in women who have experienced IPV. The concerns surrounding screening for IPV-BI arise from a history of mental health information, such as depression, anxiety, or post-traumatic stress disorder (PTSD) being weaponized against women in family law proceedings. Not only does this imply BI will be similarly weaponized, but that disorders often diagnosed alongside BI – depression, anxiety, and PTSD – will almost certainly be used in an attempt to prove a woman is unfit to parent. To examine this issue, lawyers were interviewed to elicit their knowledge of IPV, BI, and IPV-BI, as well as the role each may play in Canadian family courts.
Lawyers provided significant insight into how IPV-BI may impact the outcome of parenting disputes in Canadian family law. The major findings can be separated into three themes: (1) education; (2) capacity; (3) causation.
It was clear through the interviews that there is a limited understanding of both IPV and IPV-BI by the legal profession. Despite all participants reporting they have had cases which involved IPV, most reported no formal education on IPV and its complexities or how it should factor into parenting disputes. It is therefore unsurprising that IPV is often dismissed within family law as irrelevant, and foreshadows lawyers being similarly ill-equipped to support clients who have sustained IPV-BI.
Capacity, here, refers to either a woman’s ability to give and receive legal instructions because of any deficits caused by the BI, or more importantly, the woman’s capacity to parent. Every participant stated that they would expect the opposing lawyer to use IPV-BI as a means to challenge a woman’s ability to parent. Interestingly, participants also said they would do the exact same thing if they were representing the alleged abuser, despite acknowledging how absurd that may sound. This mirrors the historical instances in family law where stigmatized health disorders such as depression were used to minimize a woman’s parenting capacity.
Lastly, lawyers emphasized that it would be difficult to prove that IPV caused the BI if there was no physical evidence. Unfortunately, this is often difficult for women and lawyers to provide in situations involving IPV. In the absence of physical evidence showing IPV or IPV-BI, this becomes a situation of hearsay. In these cases, women are either not believed, their experiences of violence are minimized, or the courts acknowledge that the IPV exists but dismiss it as marital conflict and deem it irrelevant to the parenting dispute. Courts may also rely on a physician’s testimony to discuss the implications of BI on tasks relevant to parenting (such as memory). However, not all physicians are well informed on the complexities of IPV-BI. It is therefore difficult for women and their lawyers to find suitable experts who can speak to both IPV and BI appropriately without causing undue harm to women through the testimony of BI and its effects.
Should we continue to screen?
Ultimately, these themes show that IPV-BI does leave women legally vulnerable due to a lack of legal precedent (it has never been seen before), inadequate education surrounding IPV and IPV-BI for legal professionals, and the difficulty in proving causation. It is important to emphasize that the BI is not the problem. Rather, it is inserting it into a legal system that is ill-equipped to appropriately address IPV-BI and which continues to suffer from the influences of sexism and racism. Although I have highlighted issues with screening for IPV-BI, I am not advocating for the cessation of this important practice; however, screening should implement the following recommendations to ensure equitable and ethical care:
Expert allyship: Organizations such as SOAR should have physicians in their team who are well versed in IPV-BI and eager to advocate for women in court.
Trauma-informed legal team: Connecting women to trauma-informed legal professionals ensures women feel supported and both women and their counsel are well-prepared to address IPV and IPV-BI in parenting disputes.
Assessment of parenting capacity: Incorporate an assessment of the patient’s capacity to parent into the screening tool. This may help counteract any allegations immediately, avoiding additional assessments and mitigating the impact these claims may have on the outcome.
Transparent informed consent: It is important that patients know that this information will likely be submitted in a parenting dispute by their spouse’s counsel. Informed consent will ensure patients can adequately prepare with their legal team.
Without implementation of these recommendations, IPV-BI has the potential to become another avenue for the perpetuation of violence post-separation – a common occurrence in outcomes of parenting disputes in Canada. These recommendations call for scientists and clinicians alike to broaden their conception of ethics and contextualize their research within the reality of their participants’ and patients’ lives.
Although current statistics show heterosexual women experience the most severe physical IPV conducive to causing BI, it is important to note that IPV in all of its forms (physical, psychological, sexual, financial, coercive control) and IPV-BI is not exclusive to heterosexual relationships or to people identifying as women. Future research surrounding IPV-BI, IPV-BI screening, and their intersection with law should be expanded to explore the phenomenon with other relationships and identities along the sexuality and gender spectrums.
World Health Organization, Department of Reproductive Health and Research, London School of Hygiene and Tropical Medicine, South African Medical Research Council. Global and regional estimates of violence against women. WHO. World Health Organization; 2014.
Valera EM, Berenbaum H. Brain injury in battered women. J Consult Clin Psychol. 2003;71(4):797–804.
Arora N, Hjalmarsson C, Lang E, Boyle A, Atkinson P. We should routinely screen for domestic violence (intimate partner violence) in the emergency department. Can J Emerg Med. 2019;21(6):701–5.
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.
Robillard JK, Jordan I. Dialogue? Yes. Burden? No. Ethical challenges in engaging people with lived experience in health care research. Brainstorm, 32-35.
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.
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.
Costescu CA, David DO. Attitudes toward Using Social Robots in Psychotherapy. Transylvanian Journal of Psychology. 2014 Mar 1;15(1).
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 Med382, 2049–2055.
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 J23, 216-218.
In April 2021, Neuralink released a video of Pager, a macaque monkey, playing a computer pong game with their brain . 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 . There are many ethical considerations associated with brain-computer interfaces and their use with animals, such as physical harm and psychological distress . 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 . 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 .
The ongoing development of neurotechnology is pulling some key neuroethics topics into the limelight . As Neuralink’s video of Pager gained popularity online, more and more individuals began expressing interest in the potential implications of neurotechnology . On social media platforms, people are engaging in neuroethics-related discussion threads , 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 .
Renewed public interest in the ethical challenges of these technologies stresses the importance of ethical and socially responsible research and development . 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 .
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 . 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 .
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 . These components may include the willingness of innovators to prioritize ethical innovation drawn from interdisciplinary expertise , and regulations and policies that prioritize individual and societal wellbeing.
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.
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.
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.