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.


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

Millie Huang
Neuroethics Canada Blog


A central set of behavioural principles governs the inability of humanity to consider complex, compound, and collective threats like climate change—and now, COVID-19—as moral problems.

Here, I will briefly comment on the moral analogy between the two crises using four psychological factors to explain climate inertia: cognitive complexity, uncertainty-generated optimism, tribalism and scapegoating, and temporospatial separation. By establishing how both global crises intersect in remarkably similar ways in terms of moral behaviour, I will discuss how research on COVID-19 public health adherence can promote future collective action on the climate issue.

Psychological factors

Cognitive complexity: As stated in a 2012 article by Markowitz and Shariff (1), people struggle to form strong moral intuitions in response to complex problems requiring cognitively-effortful processes to understand.

Climate change is a quintessential example: it non-linear, consisting of non-proportional inputs and outputs, abrupt changes and tipping points, and feedback loops. These components interlock in complex ways that are not fully understood, leading to significant misconceptions among the general public. Exponential growth bias (Fig. 1.), the cognitive tendency to linearize trends, leads to gross underestimations of the threat posed by exponential progression and leads to hazardous policy delays. Moreover, climate change lacks a simplifying moral framework—one that involves intentionally caused harms to which brain regions responsible for moral judgment are most sensitive (2). Instead, climate change is commonly attributed to natural causes, with some people denying any degree of human involvement.

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

COVID-19 demonstrates the same nonlinearity. An infectious disease is a textbook example of exponential growth (Fig. 2): within a period of one month, COVID-19 infection rates rose from 58 to more than 150,000 in the USA alone (3). Given the natural origins of the virus, COVID-19 lacks clear human perpetrators. People may be ignorant of their role in disease transmission especially if they are asymptomatic. This is only one complicating factor in COVID-19’s complex transmission including long incubation periods and multiple risk factors. The misinformation epidemic further impedes health guidelines and fosters public mistrust in scientific and public authorities. Overall, underestimation of the viral spread at early stages led to dangerous delays in policy action: a mistake estimated to cost approximately 36,000 lives in the USA (4).

Fig. 2. COVID-19 deaths per million in the early pandemic, as of April 23, 2020.
Source: European CDC; Our World in Data. (5)


Uncertainty-generated optimism: Uncertainty is another defining feature of the climate crisis. Due to the complex dynamics that underlie environmental change, our best predictions for the impacts of climate chance inevitably fluctuate (Fig. 3). Well-intentioned use of probabilistic phrases such as “likely” and “very likely” in mainstream climate reports to encompass these predictions however can mediate poor risk perception and encourage the overestimation of positive future outcomes (6).

Fig. 3. 90% confidence intervals representing statistical uncertainty in global temperature predictions, color-coded by relative contribution to total uncertainty. Source: Ed Hawkins. (7)

The COVID-19 crisis is also highly uncertain, especially at its outbreak due to limited and rapidly-changing information. This increased uncertainty and scepticism, compounded by viral misinformation (8) on social media and the internet. For the COVID-19 pandemic, the lack of past experiences to anchor predictions hindered accurate risk appraisal. This is evident in the disparity in preparedness between countries that had residual awareness from the 2003 SARS epidemic compared to countries facing the pandemic anew (9). Novel research suggests that risk perception is directly correlated with engagement in protective health behaviours during COVID-19 (10). Thus, modelling effective climate risk communications to amplify scientific clarity remains crucial.


Tribalism and scapegoating: When faced with blame, individuals tend to invoke cognitive biases that downplay their own culpability and scapegoat others (11).

As the tragedy of the commons unfolds around environmental issues, some countries refuse to make economically-limiting emissions cuts unless major competitors do the same (12). The concept is tied to moral tribalism: personal, political, and national identity that contribute to discordant perspectives and in-group favouritism. As individuals strain to understand beliefs that conflict with their own, political polarization of climate change threatens beliefs about scientific validity, threat-level, and personal responsibility.

Similar biases are relevant to the COVID-19 pandemic. Public health officials, immigrants, and Asian communities are frequent targets of scapegoating (13, 14, 15). Support for mitigation measures is divided among ideological camps in polarized countries like the USA, reflected in polls (15) and public media. This isolating rhetoric amplifies social divisions and withholds focus from collective responsibility.


Temporospatial separation: A major problem in framing the climate issue is that it is distant, with the most severe impacts befalling not present polluters, but the global poor, future generations, and non-human species. Prosocial moral judgment, still adapted to ancient life in small tribes, favours in-groups rather than psychologically-distant out-groups (16). Certain areas in the social brain activate to a greater extent for proximal individuals, boosting emotional association, empathy, and altruistic motivation. The suffering of distant individuals, including oneself in the future, fails to activate these regions and blunts empathic responses (17). Consequently, many people may believe there is mutual exclusivity between present-day benefits such as socioeconomic development and future-oriented climate change mitigation measures.

This concept drives the largest wedge between the analogy, as COVID-19 is clearly a more short-term phenomenon with visible present-day consequences. However, if the timeline of the pandemic is made relative so that we look at its early stages, it is clear that both crises still present similar challenges. A virus originally localized in East Asia did not elicit countermeasures in countries that had yet to report their first case. One of the main counterarguments against stringent COVID-19 regulations is economic losses, including high unemployment rates. The virus is also sharply unequal in impact. It may be deadly for vulnerable populations, while others may experience little to no symptoms. Systemic inequities exacerbate health inequalities, making certain groups more susceptible to the pandemic, including immigrants, racial minorities, and those of low-socioeconomic status. However, adherence to public health recommendations during the pandemic is partly predicted by pro-sociality towards these aforementioned at-risk populations—highlighting the importance of individual awareness of the collective (18).

The tale of two crises

To avoid the most severe effects of climate change, humanity must reach net carbon neutrality by 2050 (19, 20), requiring rapid, drastic, and systematic changes across societal levels. However, we display an overall apathy towards the economic and lifestyle sacrifices necessary to do so (21).

COVID-19 is a largely different story: lifestyle and economic interests have taken a back-seat to public health. The large part of society is proving itself capable of prioritizing and rapidly adapting to public health measures, sacrificing normal activity like work, school, and social gatherings. There exists a clear priority, one that has led to significant beneficial health outcomes—a study published in Nature (22) estimates that anti-contagion measures averted approximately 495 million infections in China, South Korea, Italy, Iran, France and the United States. Why then, has the world effectively adapted to an infectious disease, but remains unsuccessful in making similar sacrifices for the climate? Perhaps, it is because of the immediate impact of COVID-19 compared to climate change, or the perception that the pandemic is time-limited whereas climate change requires long-term mitigation efforts. While inherent differences make it difficult to distinguish underlying factors, moral judgment may play a central role.

Scientists are addressing these questions in the form of novel research regarding the socio-behavioural motivators of public health adherence. This includes data on prosocial emotions, trust in scientific and governmental institutions, and risk perception (23). By identifying the behavioural factors behind successful public health campaigns, corresponding insights may be drawn for climate mitigation. Altogether, the findings may be consolidated into public communication strategies that translate diffuse challenges into clear mental models that support individual commitment to collective action.

Conclusion

The United Nations Economic Commission for Africa has stated that “COVID-19 lessons offer hope for global efforts to address climate change impacts” (24). Indeed, climate change researchers and communicators alike are recognizing the potential that the COVID-19 pandemic has for providing a template for climate response. This does not entail reframing pandemic response as a precursor for climate change mitigation efforts, but rather clarifying the behavioural motivators underlying successful public health interventions, and connecting these motivators to public communication strategies.

An interdisciplinary approach that combines the knowledge of behavioural scientists, environmental scientists, and communications experts is essential for any effective response to the climate crisis. Policymakers should support behavioural measures, remove structural obstacles to adherence, and promote individual liberties and justice within public ethics strategies.

To echo environmental ethicist Dale Jamieson, the climate problem cannot be solved with only scientific or technological advances. Instead, the solution concerns our values:

It is about how we ought to live, and how humans should relate to each other and to the rest of nature. These are problems of ethics and politics as well as problems of science. (25)

The rapid reaction to the COVID-19 crisis shows that we are more than capable of overcoming psychological roadblocks in order to confront shared challenges. The why behind this outcome is a research gap that we have an ethical obligation to fulfill—for our own sake and that of future generations.

After all, although climate change is much more prolonged a crisis than the current pandemic, it is no less urgent.


Millie Huang is a Research Assistant at Neuroethics Canada.
She is a 3rd year student at the University of Pennsylvania, studying Neuroscience and Classics.