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.


Novel Epilepsy Treatments: Factors That Matter the Most to Parents and Doctors

This blog post discusses some of the key findings from a poster presentation for the 2021 annual meeting of the American Academy of Neurology (abstract here) and published in the Journal of Child Neurology (2021, paper here).

Neurotechnologies that can change certain functions of the brain may help children with a type of epilepsy that responds poorly to anti-seizure medication (drug-resistant epilepsy). However, there are important differences in the way that parents and doctors make treatment decisions about them.

For parents and caregivers of children with drug-resistant epilepsy (1), treatment choice goes beyond just the direct effect of the treatment on the child’s seizures. They also consider their child in context of the world and their overall quality of life (2). For doctors, treatment choice focuses on the evidence of effectiveness and the seizures themselves (3,4). Understanding both the shared and different decision-making priorities for these groups requires deeper insight into the values that drive them.

The promise and uncertainty of neurotechnologies

Neurotechnologies use innovative techniques to alter brain activity in two main ways: electrical stimulation (i.e., neuromodulation) or the removal of diseased tissue. Modern examples include responsive neurostimulation and laser interstitial thermal therapy. These treatments are gaining in popularity because of their perceived benefits, such as reversibility and limited invasiveness.

Given the special developmental needs of children, we wanted to better understand the trade-offs of benefit and risk. We talked to parents and doctors caring for children with drug-resistant epilepsy across Canada and the USA. We asked them to identify the most important factors they consider when weighing novel neurotechnologies against traditional neurosurgery.

For parents, quality of life is key

When asked about new forms of neurotechnology to treat their child’s epilepsy, parents highlight the benefits including – but also beyond – seizures. Specifically, parents identify quality of life as a crucial factor. This includes life factors such as independence and freedom from the side effects of medication.

“Can they [our child] hold down a job? Can they have a house? Can they get married and have a life? To me, that was important,” said one parent.

Doctors mainly discuss seizure freedom as a measure of success. As one doctor stated, it’s important to consider multiple factors, including quality of life, but that “the big [measure] is seizure control, decreased seizure frequency, and then seizure freedom.”

Not all information is equal

For doctors, scientific evidence is the main factor in considering a new procedure, and to prioritize safety and trust. Introducing novel treatments is therefore challenging (5), because they lack clear evidence while they are being studied, especially in children.

Parents struggle to meet all kinds of information needs. They describe spending hours learning online from a range of sources–from academic articles to blog posts. The credibility and readability of these online resources varies greatly, and they report that reliable sources of information are sometimes difficult to identify.

One parent commented, “[Once the information is] on the internet …we have to decipher whether it’s real.”

Many parents suggest that it would be helpful to receive objective materials directly from hospitals or epilepsy centers.

Preserving trust for novel treatment decisions

Novel treatments disrupt conventional decision-making paradigms. Understanding the different ways medical professionals and parents approach treatment decisions can ease the experience of choosing treatment.

Parents maintain a high degree of trust in their doctors and medical team. Incorporating the different perspectives of families, young patients, and physicians preserves trust and supports inclusive clinical practice.

See the poster above for an overview of the results.

For an overview of neurotechnologies in pediatric epilepsy, see this blog post.
For the views of youth on neurotechnology, see Udwadia et al.’s paper.

Acknowledgements to the leaders of this work Dr. Judy Illes (PI) and Dr. Patrick McDonald (Co-PI). I thank our collaborators Dr. Mary B. Connolly, Dr. Mark Harrison, Dr. George M. Ibrahim, Dr. Robert Naftel, and Dr. Winston Chiong, Dr. Urs Ribary and other members of the Neuroethics Canada team. This work is supported by: the National Institutes of Health grant (JI) 1RF1 # MH117805, Canada Research Chairs Program (JI), and the UBC Alcan Chair in Neurosciences (PJM).

References

  1. Kwan P, Arzimanoglou A, Berg AT, Brodie MJ, Hauser WA, Mathern G, et al. Definition of drug resistant epilepsy: Consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies. Epilepsia. 2010;51(6):1069–77.
  2. Hrincu V, McDonald PJ, Connolly MB, Harrison MJ, Ibrahim GM, Naftel RP, et al. Choice and Trade-offs: Parent Decision Making for Neurotechnologies for Pediatric Drug-Resistant Epilepsy. J Child Neurol. 2021 Jun 2;08830738211015010.
  3. McDonald PJ, Hrincu V, Connolly MB, Harrison MJ, Ibrahim GM, Naftel RP, et al. Novel Neurotechnological Interventions for Pediatric Drug-Resistant Epilepsy: Physician Perspectives. J Child Neurol. 2020 Oct 28;0883073820966935.
  4. Kaal KJ, Aguiar M, Harrison M, McDonald PJ, Illes J. The Clinical Research Landscape of Pediatric Drug-Resistant Epilepsy. J Child Neurol. 2020 Jun 16;0883073820931255.
  5. Iserson KV, Chiasson PM. The Ethics of Applying New Medical Technologies. Semin Laparosc Surg. 2002 Dec 1;9(4):222–9.

Viorica Hrincu, MSc is doing her PhD in Experimental Medicine at the University of British Columbia in the Neuroscience Engagement and Smart Tech (NEST) lab.

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.

Hacking the mind: How technology is changing the way we view our brain and ourselves

Dr. Nir Lipsman (Assistant Professor, Division of Neurosurgery, Department of Surgery, University of Toronto) presented “Hacking the mind: How technology is changing the way we view our brain and ourselves” at the 2021 Brain Awareness Week – Annual Distinguished Neuroethics Lecture, held on March 16, 2021.

Overview:
As it advances, our relationship with brain technology will change. In this lecture, Dr. Nir Lipsman will discuss how our knowledge of brain circuitry, and how it can go wrong, has informed our understanding of human behaviour. We will then discuss the implications of more sophisticated, precise and less intrusive brain technology, on that relationship, and what it could all mean for the next generation of brain therapy and beyond…

Bio:
Nir Lipsman MD, PhD, FRCSC, is a neurosurgeon and scientist at Sunnybrook Health Sciences Centre and an Assistant Professor of Surgery at the University of Toronto. He completed his undergraduate degree at the University of Toronto followed by a medical degree at Queen’s University, and a neurosurgical residency at the University of Toronto. During his residency, Dr. Lipsman completed his PhD investigating novel neuromodulation strategies in patients with treatment-resistant psychiatric and neurologic conditions. He is currently the Director of Sunnybrook’s Harquail Center for Neuromodulation, and the Clinical Director of Sunnybrook’s Focused Ultrasound Centre of Excellence.

Dr. Lipsman has helped develop several clinical trials of MR-guided focused ultrasound (FUS) in novel indications, including among the world’s first experience of FUS in essential tremor, obsessive-compulsive disorder, major depression and chronic pain, as well as the first randomized control trial of FUS in tremor. He has led the world’s first application of FUS-mediated blood brain barrier (BBB) opening in Alzheimer’s Disease, and helped develop the first applications in primary and secondary brain tumors and ALS. He has published over 100 peer-reviewed papers and book chapters, including in The Lancet, Lancet Neurology, Lancet Psychiatry, New England Journal of Medicine, and Neuron.

Dr. Lipsman also has a strong interest in the broader clinical and ethical implications of neuromodulation, and has been closely involved in the development of international guidelines for the use of surgery in psychiatric disease. In collaboration with Drs. Judy Illes and Pat McDonald at UBC, he helped found the Pan Canadian Neurotechnology Ethics Consortium (PCNEC), bringing together experts in neuromodulation and ethics, to identify and tackle the most pressing ethical questions in the field.

Why neurosurgeons should care about ethics and why ethicists should care about neurosurgery

At the most recent Neuroethics Canada Seminar Series, Dr. Nir Lipsman discussed why neurosurgeons should care about ethics and why ethicists should care about neurosurgery.

Bio:
Nir Lipsman, MD, PhD, FRCSC is a neurosurgeon and scientist at Sunnybrook Health Sciences Centre and an Assistant Professor of Surgery at the University of Toronto. He completed his undergraduate degree at the University of Toronto followed by a medical degree at Queen’s University, and a neurosurgical residency at the University of Toronto. During his residency, Dr. Lipsman completed his PhD investigating novel neuromodulation strategies in patients with treatment-resistant psychiatric and neurologic conditions. He is currently the Director of Sunnybrook’s Harquail Center for Neuromodulation, and the Clinical Director of Sunnybrook’s Focused Ultrasound Centre of Excellence.

Neuroethics: Anticipating the Future

Over the last decade, there have been unparalleled advances in our understanding of brain sciences. But with the development of tools that can manipulate brain function, there are pressing ethical implications to this newfound knowledge of how the brain works. In Neuroethics: Anticipating the Future, a distinguished group of contributors tackle current and critical ethical questions and offer forward-looking insights.

What new balances should be struck between diagnosis and prediction, or invasive and non-invasive interventions, given the rapid advances in neuroscience? Are new criteria needed for the clinical definition of death for those eligible for organ donation? As data from emerging technologies are made available on public databases, what frameworks will maximize benefits while ensuring privacy of health information? These challenging questions, along with numerous other neuroethical concerns, are discussed in depth.

Written by eminent scholars from diverse disciplines including neurology and neuroscience, ethics and law, public health and philosophy, this new volume on neuroethics sets out the many necessary considerations for the future. It is essential reading for the field of neuroethics, neurosciences and psychology, and an invaluable resource for physicians in neurological medicine, academics in humanities and law, and health policy makers.

Neuroethics: Anticipating the Future is now available. Get your copy now!
https://goo.gl/d7knyK

Experimental Neuroethics

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Photo credit: Timothy Epp, Shutterstock

Four years ago, Neil Levy gave the concluding lecture at the first Brain Matters conference in Halifax. He alerted the audience of neuroethicists to the fact that the field of philosophy was undergoing a revolution – rather than muse from their armchairs in the ivory tower, a group of renegade philosophers were carrying out real experiments, asking people what their intuitions were about central issues in philosophy. Dubbed experimental philosophy, the new initiative was met with more than passing resistance from traditional philosophers. The apostate experimental philosophers responded by developing a logo of a burning armchair.

The landmark experiment was carried out by Josh Knobe, and its findings subsequently became known as the Knobe effect (you can watch a great recreation of the phenomenon in this YouTube video). Essentially, what Josh did was repurpose an old method from social psychology called the contrastive vignette technique (CVT) [1]. At its simplest, the CVT involves designing a pair of vignettes that carefully describe a particular situation (in the case of experimental philosophy, one that is often morally charged) but crucially differ in one detail, hence the term contrastive. Respondents see one and only one version of the vignette, and are then asked questions about what they have just read, with responses commonly recorded as a numerical rating on a Likert scale. By comparing the averaged responses between separate groups of people who have read the vignettes, the experimenter can systematically investigate the effects of small changes (of which the respondents are entirely unaware) upon attitudes towards nearly any topic. The experimental philosophers tend to use the technique to explore the meaning of concepts. Neil Levy pointed out that this same approach could, in principle, be applied to the full range of issues in neuroethics.

Neil’s presentation struck me like a thunderbolt. I had come to the field of neuroethics with a background in cellular and molecular biology, and had spent much of my career as a card-carrying reductionist: as a graduate student in the 1980’s, I championing the then-novel technique of recording from single neurons in freely moving animals, and as a postdoc I moved on to the better controlled (if less naturalistic) technique of patch clamp analysis of identified neurons in slices of brains. My subsequent rise through the ranks of academia was one in which I applied quantitative rigor to every question that I asked, and in the circles in which I traveled, this was lauded as the ultimate way to provide reproducible (and by inference, meaningful) results. I saw at once that the CVT opened the door towards doing something similar in the field of neuroethics.

My research group at the National Core for Neuroethics has embraced the use of contrastive vignettes wholeheartedly, and with a nod to the experimental philosophy camp, we call the approach Experimental Neuroethics. The team is applying the technique to a range of issues in contemporary neuroethics, probably best exemplified by our recent publications exploring public attitudes towards cognitive enhancement [2] as well as the acceptability of overt and covert nudges [3].

If the vignettes appear simple, I can assure you that properly crafting them is hard work. We begin with a carefully considered hypothesis and regularly find that the hypothesis morphs substantially (usually into something much more insightful) as the process unfolds. We then compose two or more contrastive vignettes, working hard to have the vignettes as minimally contrastive as possible (one word differences between vignettes is the ultimate goal, but this is often not feasible). Finally, we develop questions; we like to have the wording of the questions always be identical irrespective of the contrastive nature of the vignette.

Then the real fun begins. After a day or two, we assemble as a team and attack our previous work. Inevitably, we find it wanting in some respect. Sometimes, embarrassingly so. We find it best to begin by asking whether the vignette and the questions directly address the hypothesis. Sometimes that means that the hypothesis changes. Nearly always, that means that the vignette changes. This process is repeated again and again, over days and weeks and sometimes months (yes, and even sometimes years!) until we have a set of vignettes that get to the heart of the matter.

At some point late in the process we carry out cognitive pre-testing. This involves sharing the vignette and the questions with someone who has no particular expert knowledge (friends of friends are likely culprits), and debriefing them about what they read. We are sometimes amazed to find that what we intended for people to glean from a vignette is at odds with their reading of the vignette. That sends us back to the drawing board.

We also run some metrics to determine whether the words we have used are understandable by a general audience. We use online readability tests such as this one to establish the educational level required for understanding the vignette; our goal is that no more than a high school education is required. Finally, we launch the survey, recruiting respondents from amongst the thousands of people who have signed up on Amazon’s Mechanical Turk – they’re more representative of the real population and aren’t as blatantly WEIRD as typical undergraduate samples. And then we hold our breath.

Once the data is analyzed, we get mired once again in deep discussion. For it is not just the quantitative aspect of Experimental Neuroethics that it satisfying (to me), but also that the data gives us an entirely new benchmark for engaging in the process of wide reflective equilibrium. Throughout this process we remain aware that an ought can not derive from is, but having the data at hand, our version of ought is very much informed by the is. Ultimately, our data emerge in concert with our normative insights, and then one more advantage of Experimental Neuroethics is realized: it is easy for others to replicate our experiments, or even to improve them by taking our vignettes and modifying them to further test their own. This iterative process of replication, critique, and systematic modification has proven to be a robust strategy for advancing insights into the nature of biological and physical phenomena. Only time will tell whether Experimental Neuroethics catches fire in our discipline as it has in the field of philosophy (where it remains controversial). If it does, we can trace it back to Neil’s presentation in Halifax….

[Cross posted at the Neuroethics Blog]


[1] Burstin K, Doughtie E, Raphaeli A. Contrastive Vignette Technique: An indirect Methodology Designed to Address Reactive Social Attitude Measurement1. Journal of Applied Social Psychology. 1980;10(2):147–65.

[2] Fitz NS, Nadler R, Manogaran P, Chong EWJ, Reiner PB. Public attitudes toward cognitive enhancement. Neuroethics. 2013 doi: 10.1007/s12152-013-9190-z.

[3] Felsen G, Castelo N, Reiner PB. Decisional enhancement and autonomy: public attitudes towards overt and covert nudges. Judgment and Decision Making. 2013;8(3):202–13.

Call for Papers: International Neuroethics Conference “Neuroenhancement”

 University of Mainz, Germany

July 7-9, 2011

This conference on Neuroenhancement will be the final conference of the Canadian-German research project “Normality, Normalization and Enhancement in the Neurosciences: Ethical, Sociocultural and Neuropsychiatric Aspects of Cognitive Enhancement”.  The aim of the conference is to provide a forum for the interdisciplinary discussion of medical, ethical, social and legal aspects of neuroenhancement. In addition, during the conference, the results of the research project “Normality, Normalization and Enhancement in the Neurosciences” will be presented. Continue reading

Techno-enthusiasts and techno-phobes

The December edition of the Atlantic Monthly has a very interesting article about Freeman Dyson’s famously skeptical view of climate change – he has come out forcefully suggesting that it is just not something we should worry about.  For those who don’t know, Dyson is a brilliant physicist who has spent much of his career at Princeton’s Institute for Advanced Studies, and has been both a practicing scientist as well as one who shares his insights on a regular basis with the general public – in 1996 winning the Lewis Thomas Prize for writing about science.  The author of the article, who has known Dyson for many years, ponders the question of how someone so brilliant could be in such profound disagreement with the rest of the scientific community?

The interesting part of the answer for me was this: that Dyson has an unfailing confidence in the redemptive power of technology.  I think that this attitude is at the heart of the many of the debates in neuroethics – are we enthusiastic about the potential advantages that a particular technological development (be it drug, device, or something else) may provide, or are we skeptical, referring again and again to the precautionary principle as our guiding light?

Kevin Kelly, founding executive editor of Wired magazine and hardly a technophobe writes,

“The idea of progress has been slowly dying. I think progress lost its allure at the ignition of the first atom bomb at the end of WWII. It has been losing luster since. Even more recently the future has become boring and unfashionable. No one wants to live in the future. The jet packs don’t work, and the Daily Me is full of spam. No one finds the Future attractive any longer.” Continue reading

Dr. Adrian Carter to Speak on Addiction Neuroethics | UBC Nov. 9, 2010

The National Core for Neuroethics at the University of British Columbia is proud to present Dr. Adrian Carter, NHMRC Postdoctoral Fellow from the University of Queensland, for a talk entitled, “Should We Trial Deep Brain Stimulation for Addiction? The Case for Caution” on Tuesday, November 9th, 2010 at 11:00am. The talk will take place in the University’s Brain Research Centre Conference Room. All are welcome. Please see below.

NEUROETHICS SEMINAR SERIES 2010-2011

Should We Trial Deep Brain Stimulation for Addiction? The Case for Caution.

Adrian Carter, PhD
NHMRC Postdoctoral Fellow
The University of Queensland

Tuesday, November 9th, 2010
11:00am – 12:00pm

The UBC Brain Research Centre Conference Room
2211 Wesbrook Mall | UBC Hospital | Koerner Pavilion
Vancouver, British Columbia, Canada

Abstract: Deep brain stimulation (DBS) has been proposed as a potential treatment of drug addiction on the basis of its effects on drug self-administration in animals and on addictive behaviours in some humans treated with DBS for other psychiatric or neurological conditions. dbs is seen as a more reversible intervention than ablative neurosurgery but it is nonetheless a treatment that carries significant risks. I will review preclinical and clinical evidence for the use of DBS to treat addiction to determine whether its use is currently warranted, making the case for caution. Severely addicted persons who try and fail to achieve abstinence may, however, be desperate enough to undergo such an invasive treatment if they believe that it will cure their addiction. History shows that the desperation for a “cure” of addiction can lead to the use of risky medical procedures before they have been rigorously tested. In the event that DBS is used in the treatment of addiction, I will examine the minimum ethical requirements for conducting such a trial.

About the speaker: Dr. Carter is an NHMRC Postdoctoral Fellow in Public Health at UQ. He is particularly interested in the impact that neuroscience has upon notions of autonomy and responsibility in addiction, the use of coercion and the capacity to consent in addiction treatment, as well as the use of novel neurological technologies to treat, and possibly, prevent addiction. Dr. Carter has published numerous articles on these issues, as well as reports for the who, the European Monitoring Centre for Drugs and Drug Addiction, and the Australian Ministerial Council on Drugs Strategy.

National Core for Neuroethics

UBC Brain Research Centre

Dr. Carter’s academic bio