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The COVID-19 crisis has transformed the highly specialized issue of what constitutes reliable medical evidence into a topic of public concern and debate. This book interrogates the assumption that evidence means the same thing to different constituencies and in different contexts. Rather than treating various practices of knowledge as rational or i...
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Background
Physical frailty and cognitive decline are two major consequences of aging and are often in older individuals, especially in those with multimorbidity. These two disorders are known to usually coexist with each other, increasing the risk of each disorder for poor health outcomes. Mental health disorders, anxiety and depression, are commo...
Citations
... Using Walter Fisher's narrative paradigm as a foundation, I have previously proposed a theoretical model that offers an explanation of how stories are evaluated by their readers and listeners across different discourses (Engebretsen and Baker 2022). For the micro-level change pursued in transformative learning, Fisher's narrative paradigm equips us with a framework for comprehending and reflecting on the process of assessing the numerous, often competing narratives to which we are constantly exposed. ...
... Neither decision is devoid of reason. Various narratives resonate with individuals in different ways and appear credible based on alignment with their deeply held values and lived experience (Engebretsen and Baker 2022). ...
The adoption of the United Nations' Sustainable Development Goals (SDGs) marks a significant shift in global political agendas, emphasising sustainability in various fields, including health. To engage meaningfully with sustainability, a transformative educational approach is essential. Lange’s concept of transformative learning encompasses three levels: personal and cognitive change (micro level), changes in our interactions with others and the environment (meso level) and societal changes (macro level). This paper posits that applying health humanities approaches, particularly narrative medicine, can enhance transformative education at these three levels, leading to a powerful, transformative health humanities framework for teaching sustainability and the SDGs. This interdisciplinary method, which includes reflective self-assessment, exploration of different relational perspectives and social reality comprehension, facilitates transformative learning. However, implementing this transformative strategy requires a critical reassessment of some core principles and methods within the existing health humanities paradigm.
... Beneath more radical approaches that call for a new form of epistemology in medicine, such as the 'situated epistemology' approach, [19][20][21] the post-normal science concept, 22,23 or the integration and implementation science concept 24,25 and other approaches, 26 there are at least two 'softer' approaches currently discussed to prepare EbM for future challenges: (1) the organic turn approach 1 and (2) the EbM+ approach. [27][28][29][30] Within the first approach, many scholars and institutions of EbM have delivered solutions to adapt EbM to a fast-changing world, mainly by accelerating the evidence-producing and -reviewing process by making the EbM process less formal and more agile (e.g., rapid reviews and living guidelines) and accepting mathematical modelling as another method for gaining knowledge. ...
Background:
To reduce their decisional uncertainty, health policy decision-makers rely more often on experts or their intuition than on evidence-based knowledge, especially in times of urgency. However, this practice is unacceptable from an evidence-based medicine (EbM) perspective. Therefore, in fast-changing and complex situations, we need an approach that delivers recommendations that serve decision-makers' needs for urgent, sound and uncertainty-reducing decisions based on the principles of EbM.
Aims:
The aim of this paper is to propose an approach that serves this need by enriching EbM with theory.
Materials and methods:
We call this the EbM+theory approach, which integrates empirical and theoretical evidence in a context-sensitive way to reduce intervention and implementation uncertainty.
Results:
Within this framework, we propose two distinct roadmaps to decrease intervention and implementation uncertainty: one for simple and the other for complex interventions. As part of the roadmap, we present a three-step approach: applying theory (step 1), conducting mechanistic studies (EbM+; step 2) and conducting experiments (EbM; step 3).
Discussion:
This paper is a plea for integrating empirical and theoretical knowledge by combining EbM, EbM+ and theoretical knowledge in a common procedural framework that allows flexibility even in dynamic times. A further aim is to stimulate a discussion on using theories in health sciences, health policy, and implementation.
Conclusion:
The main implications are that scientists and health politicians - the two main target groups of this paper-should receive more training in theoretical thinking; moreover, regulatory agencies like NICE may think about the usefulness of integrating elements of the EbM+theory approach into their considerations.
... The critique aligns broadly with the "critical theory" perspective in emphasising emancipation from dominance and oppression while also advocating for freedom and participatory democracy 3 . It consists of a range of arguments about the importance of adequate public engagement and consideration of the social, political, ethical, and humanistic dimensions of the science-policy nexus (Bohman, 2021;Cairney andOliver, 2017, Carney andBennett, 2014;Heinsch et al., 2023;Pedersen, 2014;Stengers, 2018;Engebretsen and Baker, 2022). They are often coupled with arguments drawing from the philosophy of science and sociology of knowledge, proffering a view of scientific evidence as provisional, contested, and existing among a plurality of views that some may regard as carrying equivalent epistemic weight. ...
The discipline of knowledge translation (KT) emerged as a way of systematically understanding and addressing the challenges of applying health and medical research in practice. In light of ongoing and emerging critique of KT from the medical humanities and social sciences disciplines, KT researchers have become increasingly aware of the complexity of the trans-lational process, particularly the significance of culture, tradition and values in how scientific evidence is understood and received, and thus increasingly receptive to pluralistic notions of knowledge. Hence, there is now an emerging view of KT as a highly complex, dynamic, and integrated sociological phenomenon, which neither assumes nor creates knowledge hierarchies and neither prescribes nor privileges scientific evidence. Such a view, however, does not guarantee that scientific evidence will be applied in practice and thus poses a significant dilemma for KT regarding its status as a scientific and practice-oriented discipline, particularly within the current sociopolitical climate. Therefore, in response to the ongoing and emerging critique of KT, we argue that KT must provide scope for relevant scientific evidence to occupy an appropriate position of epistemic primacy in public discourse. Such a view is not intended to uphold the privileged status of science nor affirm the "scientific logos" per se. It is prof-fered as a counterbalance to powerful social, cultural, political and market forces that are able to challenge scientific evidence and promote disinformation to the detriment of democratic outcomes and the public good.
... 58 Narrative has an important ethical dimension, and narrative (or practical) rationality relates to what is right and reasonable in a particular set of unfolding circumstances. 88 As Perelman (among others) has argued, engagement with one's audience's worldview and "points of departure" (i.e., prior assumptions) is key to effective political argumentation and persuasion. 61 ...
... Case 2: Polarized Narratives About the COVID-19 Pandemic. As the COVID-19 pandemic unfolded, multiple narratives or "framings" emerged of how the virus was transmitted (rule 7), 88 leading to bitter conflicts among experts (rule 3). Infectious disease clinicians advising the World Health Organization (WHO) were mostly hospital based and focused on preventing cross-infection of contact-spread diseases; trained in evidence-based medicine, they greatly valued randomized controlled trials and meta-analyses of those trials. ...
Policy Points
The concept of value complexity (complexity arising from differences in people's worldviews, interests, and values, leading to mistrust, misunderstanding, and conflict among stakeholders) is introduced and explained.
Relevant literature from multiple disciplines is reviewed.
Key theoretical themes, including power, conflict, language and framing, meaning‐making, and collective deliberation, are identified.
Simple rules derived from these theoretical themes are proposed.
... We explore the epistemic and ethical conditions of effective, democratic policy making and illustrate how a pragmatist approach might differ from a so-called science-driven approach with several UK examples drawn from the Covid-19 pandemic and suggest a pragmatist-informed program of applied research on crisis public health policymaking. Similar problems were encountered in many other countries (Engebretsen and Baker, 2022). ...
... Pragmatism emphasizes that real-world experiments need to be conducted with rather than on partner communities. Crucial to the link between research and participatory democracy is the need to educate citizens, especially the marginalized and oppressed, and help them develop the skills and attitudes of critical thinking (in both senses: critical appraisal of scientific evidence but also critical awareness, where relevant, of their own position in an unequal society) (Engebretsen and Baker, 2022;Freire, 1970). ...
... We and others have analysed the masking question in detail elsewhere from scientific, social science and philosophical perspectives (Chernozhukov et al., 2021;Howard et al., 2021;Czypionka et al., 2021;Engebretsen and Baker, 2022;Greenhalgh et al., 2020). Briefly, deep divisions emerged early in the pandemic between advocates of the precautionary principle (who argued that facemasks for the lay public might work and are unlikely to harm, so they should be introduced as soon as possible-especially since indirect evidence suggested they could have a large impact on transmission) and those who espoused so-called "evidence-based" masking policies (arguing that, pending definitive scientific evidence from randomized controlled trials, masks should not be recommended and certainly not mandated). ...
In this conceptual paper, we argue that at times of crisis, what is sometimes called “evidence-based” or “science-driven” policymaking—establishing scientific truths and then implementing them—must be tempered by a more agile, deliberative and inclusive approach which acknowledges and embraces uncertainty. We offer pragmatism as one potential option, using examples from the UK to illustrate how such an approach might have changed particular crisis decisions and led to better outcomes. We propose that to better prepare for the next public health crisis, five pragmatism-informed shifts are needed in the science-policy relationship: from scientism to science-informed narrative rationality that emerges from practice; from knowledge-then-action to acting judiciously under uncertainty; from hierarchies of evidence to pluralist inquiry; from polarized camps to frame-reflective dialogue; and from an “inside-track” science-policy dialogue to greater participatory democracy. We suggest an agenda for a pragmatist-informed program of applied research on crisis public health policymaking.
This Special Collection focuses on the ‘pathological body’ in literature, from the socio-cultural anxieties around the human body to the sick body’s relationship with language(s) and translation. The six articles—from Italian, German, Spanish, French literatures—explore posthuman female body-subjectivity; catalepsy as a framework to reorient traditional gender narratives; the violence of maintaining a socially acceptable subjecthood; the body as language in creating identity; the emotional-psychological coupled with the environment; and translation as an epistemic category. The concept of the ‘pathological body’ arose from the professionalisation of European medicine from the mid-1800s, and literary texts and medical theories travelled across national boundaries in a mutually reinforcing interconnection that globally positioned bourgeois masculinity at the top of a medical-humanistic hierarchy. This Introduction calls for the collaboration of European Modern Languages scholars to begin undoing the consequent harmful models. Understanding that medical paradigms are formed through credible stories, the first section highlights literature as an activist (Thornber, 2013) and ethical site of knowledge that can deconstruct an apparently immutable medical narrative. Section II gives an historical overview of the rise of clinical medicine and its creation of the idealised man and woman, and examines the repercussions of not fulfilling these normative categories. Section III discusses the overlap of nineteenth-century scientific and literary texts, and the danger of translating ‘sickly’ texts. Section IV notes the signal importance of language and considers how non-normative and racialised identities can ‘write back’ against medical paradigms. Banner image: Max Simon Nordau, Entartung, Vol. 2, p. 401. 1893 edition. Berlin: C. Duncker. Image taken from Google Books.
The article highlights the way storytelling and poetry can heal a worried mind and make sense of life events. Three main focuses will be presented and discussed. First is the nature and quality of storytelling and how it relates to meaning making and life events. Second is the healing power and freedom of the words used in poetry. Third is storytelling and poetry as imagination and everyday experiences. The relationship between meaning making and storytelling is something neither determined by innate biological drives nor solely created in the individual mind. To speak of meaning making in first-person narratives, one must include the concepts of culture, politics, history, and living in the world with others. By weaving concepts from the field of art, philosophy, history, psychology, sociology, and anthropology, the manuscript shows how storytelling and poetry deal with experiences and emotions that affect our understanding of life events. First-person narratives guide us back to people’s everyday experiences and let us understand human experiences and meaning making in the way that they are seamlessly lived. Meaning making and storytelling are universal cultural activities that we need to understand to communicate and understand oneself and others.
Public health, just as any policy-related field, faces the evergreen problem of turning knowledge into action. Among other problems, there is a clash between the inherent complexity of public health problems and the inevitable push, by decision-makers and the public, to simplify them. The Covid-19 pandemic has shown the insufficiencies of our current epistemological, methodological and normative apparatus to handle such crises in a timely manner. Despite this, several authors have been arguing for the importance of engaging global crises such as Covid-19 in ways that do not oversimplify key dimensions of the issues involved. In this paper, we contribute to this emerging scholarship. Building on existing work in the field of environmental problem-solving, we propose an integrative approach to navigating complex trade-offs in public health interventions. Briefly put, we propose that decision making should be informed by an analysis of any given problem from four distinct, but interrelated, lenses: (i) values and valuation, (ii) process and governance, (iii) power and inequalities and (iv) scientific evidence, methods and concepts. This normative framework, we argue, can help with spelling out the complexity of public health problems and with spelling out the rationale behind public health decision making to non-specialists and the general public. We illustrate our approach using the controversy over wearing face masks in the Covid-19 pandemic.
This paper supports recent calls for research programs that explore the public's online representations of their knowledge of science-related topics, and argues that a useful line of inquiry in such a program would be to investigate how values are communicated in the public's construction of their knowledge of climate change on social media. A values-based approach to public knowledge broadens the concept of knowledge from being a cognitive and quantifiable attribute that the public may be expected to have less of than experts. In so doing, it captures more holistic aspects of public epistemologies, and acknowledges that climate change is an emotive and normative issue. This paper connects such a future line of inquiry with the concept of the public's climate “imaginaries” and proposes a number of qualitative methods for analyzing the public's communication of knowledge/values on social media.
