BERA Abstract Interrupted: Patient Knowledge – A Medical Taboo
What follows is an abstract which was accepted by the British Educational Research Association (BERA) for their 2021 conference however due to there not being any scholarship or widening participation provisions for gaining membership to BERA, I could not afford to present it. Whilst there are no provisions for supporting people without access to the necessary finance, this work is not simply ‘academic’ but is an ongoing project which is a result of years of study of exclusive institutional practices.
This opportunity affords me an opportunity to extend my investigation and research into institutions and how they are functioning in society. I have a particular interest in examining policy narratives and making comparisons to cultures of practice with a particular focus on examining systems effects in line managed vertical hierarchies.
Here is a screengrab of the acceptance email for my BERA 2021 Abstract Submission (no. 5088501):
Here is the abstract:
Patient Knowledge: A Medical Taboo
Both patients and doctors sometimes feel they are not listened to. Doctors sometimes encounter non-engagement with their guidance and obfuscation of relevant information important for healthcare management. In an age of information and access to high quality orthodox science some members of the public take on learning processes so as to be able to have informed dialogue surrounding life affecting issues.
Patients, however, encounter a system in which there is no means to have their research – and sometimes critical insights – engaged with regarding their choices. Possibly most significantly it creates the conditions for a ladder of inference (Argyris, Putnam & Smith, 1987) where non-professional people are moved further from the understandings of peer reviewed science and reject an institution which refused to acknowledge them, and where medical professionals impoverish their continuing development of understandings by a prohibition on engaging with medical science outside of the professional channels.
Patient knowledge is a significant medical taboo. Institutionally it is met with disregard as the control of the profession and practice is demarcated with a legal monopoly. The institutional and professional demarcations represent an alienation (Tully & Skinner, 2009) and colonisation of a kind of self-ownership which I argue plays an important role in medicine.
This kind of self-ownership of medicine is here argued as a form of zoopharmacognosy (Raman & Kandula, 2008) and its alienation is associated with a particular political perspective which I argue is problematic to a broader and sustainable adaptive medical perspective. This institutional imbalance distorts the ecology of signs (identifiable by their external nature) and symptoms (identifiable by the subject) necessary for the diagnostic art (Nessa, 1996).
Patients who engage in scientific and medical literature to inform their decisions and consent allocation encounter the effects of medical dehumanisation (Leyens, 2014). I argue that outcomes of this juncture are an institutional dementalisation (Loughnan et al, 2010) of the non-professional individual, a dismissal of patient knowledge, derivatized interactions (Cahill, 2012) from behaviourist role modeling and/or a spiral of silence (Noelle-Neumann, 1984) in attempts to ‘manage patient expectations’.
This alienation of the patient from the self-ownership of medical knowledge brings about a number of healthcare problems and constrains the capabilities of medical practice. It corrodes the patient-doctor relationship and damages patient engagement with guidance as well as impoverishes the subject (Haslam, 2007).
The ommission of acknowledgement of patient knowledge implicitly brings with it the systems problems of excising unique sources of awareness. The medical profession needs the capacity to be a learning institution (Senge, 2010) beyond self reference (Luhmann & Bednarz, 2005) via an awareness of its environment; this is a critical characteristic for evolution. Medicine is also obliged to humanise and value the patient as sovereign in their own right as a necessary measure to realise the medical art and science.
Changes to the overshaddowing parent-child dynamic to one which offers balance and dialogue reconfigures rights and responsibilities. Such a reconfiguration offers particular advantages including a culture which can mature in terms of understanding the complexities of the subjects, the value of consulting those with trained expertise, insights for healthcare which are otherwise lost or overdue, a recognition of distributed liability and a mutual duty of candour.
On this basis I argue that for necessary advances in medicine we need necessary change to the institution. What this might look like for the minority of patients who require a complex dialogue is drawing on academic tenets and texts of medical education itself to construct the principle argument.
- Argyris, C., Putnam, R., & Smith, D. M. L. (1987). Action science. San Francisco: Jossey-Bass.
- Cahill, A. J. (2012). Overcoming objectification: A carnal ethics. Routledge
- Haslam, Nick. (2007). Humanising medical practice: The role of empathy. The Medical journal of Australia. 187. 381-2.
- Leyens, J.-P. (2014). Humanity forever in medical dehumanization. In P. G. Bain, J. Vaes, & J.-P. Leyens (Eds.), Humanness and dehumanization (pp. 167–185). Psychology Press.
- Loughnan, S., Haslam, N., Murnane, T., Vaes, J., Reynolds, C. and Suitner, C. (2010), Objectification leads to depersonalization: The denial of mind and moral concern to objectified others. Eur. J. Soc. Psychol., 40: 709-717. https://doi.org/10.1002/ejsp.755
- Luhmann, N., & Bednarz, J. (2005). Social systems. Stanford, Calif: Stanford Univ. Press.
- Nessa, J. About signs and symptoms: Can semiotics expand the view of clinical medicine?. Theor Med Bioeth 17, 363–377 (1996). https://doi.org/10.1007/BF00489681
- Raman, R., Kandula, S. Zoopharmacognosy. Reson 13, 245 (2008). https://doi.org/10.1007/s12045-008-0038-5
- Senge, P. M., Senge, P. M., & Business News Publishing,. (2014). The fifth discipline: The art & practice of the learning organization.
- Tully, J., & Skinner, Q. (2009). Approach to Political Philosophy. Cambridge, GBR: Cambridge University Press.
Carrying forward the conversation
The abstract which got accepted and I was delighted; for me it is a chance to be able to find peer review and share the thinking I have been working on with others who are interested in the areas I am interested in. Accessing critical feed back is such an important thing in the development of my learning trajectory, but equally important is that being able to access communities of peers offers a societal mentalising process.
Peter Fonagy is credited with the modern usage of the term mentalization and if we view institutions as acting in the role of corporate parents – which is how they cast themselves, recognitive processes are essential for their functioning in society. This speaks to the thesis which is at the core of the work which I submitted to BERA and critically examines how the institution of medicine is relating to the world – or failing to do so.
In one perspective an institution – be it medicine or education or whatever – is not a gatekeeper nor an authority, though it may play a significant role in helping people access a field of knowledge and act as an author or knowledge broker. In a similar vein, a government can be perceived as a system of governance derived from shared values rather than a power structure set to rule the lives of people.
In examining institutions as corporate parents it is helpful to ask what kind of parent are they ? Are they a ‘good’ parent or a ‘bad’ parent ? What values are brought to the understandings of good and bad ? Are honesty, veracity, nurture, clarity, and so on necessary qualities of what makes a good parent ? An examination of the values is a necessary investigation to understand the character of an institution and/or the individuals who operate within it. The idea of values has been extensively researched by the likes of Shalom Schwartz:
What is enigmatic about values though is that self assessments are often blighted with cognitive biases and misapprehensions. In her book ‘Invisible Women; Exposing Data Bias in a World Designed for Men‘, Caroline Criado Perez writes in her chapter ‘The Myth of Meritocracy‘:
“Actually, a belief in meritocracy may be all you need – to introduce bias, that is. Studies have shown that a belief in your own personal objectivity, or a belief that you are not sexist, makes you less objective and more likely to behave in a sexist way . Men (women were not found to exhibit this bias) who believe that they are objective in hiring decisions are more likely to hire a male applicant than an identically described female applicant. And in organisations which are explicitly presented as meritocratic, managers favour male employees over equally qualified female employees.”
[citation: 10. Uhlmann, Eric Luis and Cohen, Geoffrey L., (2007), ‘”I think it, therefore it’s true”: Effects of self-perceived objectivity on hiring discrimination’, Organizational Behaviour and Human Decision Processes, 104:2, 207-23; Castilla, E. J., & Benard, S. (2010). The Paradox of Meritocracy in Organizations. Administrative Science Quarterly, 55(4), 543–676. https://doi.org/10.2189/asqu.2010.55.4.543]
What is relevant here is that self evaluations of values can reinforce cultures of privilege. I am sure that the narratives which merchant bankers have often paint a picture that they are giving opportunities to the poor rather than taking them away; I am sure that some of the people who invest in the arms trade speak to themselves as being involved in keeping peace (the UK being one of the biggest arms dealers in the world); but the cultures of aspirational statements which abound are lipservice – a part of cognitive dissonance. Schwartz’s values can become a swatch of values to dress in.
When people and/or institutions and organisations say one thing and do another it generates significant hidden problems which manifest as divides in society. I am interested in the sociology at work of large organisational structures which shape power and opportunity; I am especially interested in working towards understanding systems effects which generate feedback loops that are gestalt – i.e. larger than the sum of their parts – and drilling down to detail how the gestalt is reproduced through day to day actions and thoughts.
Institutionally and corporately we are swamped by the policy saying one thing and the practice being another. This kind of double think has permeated public life manifesting a vast array of intended and unintended consequences, many of them corrosive to the social structures which are important for a health giving society. Kalwant Bhopal in her book ‘White Privilege: The Myth of a Post Racial Soceity‘ examines this neoliberal trend:
“The main argument of the book is that within a neoliberal context policy making in its attempt to be inclusive has portrayed an image of a post-racial society, when in reality vast inequalities between white and black and minority ethnic communities continue to exist. Policy making has exacerbated rather than addressed the inequalities which result from processes of racism, exclusion and marginalisation in which white identities are prioritised and privileged above all others.”
[Page 1, Bhopal, K., & Alibhai-Brown, Y. (2018). White privilege: The myth of a post-racial society.]
These dissonant realities set up the conditions for uncertainty and distrust which do not bode well for activities which need collective responses. Systems of organisation become highly pressurised and whilst individuals working in and under policy structures may disagree with they way they are mandated to act, the consequentialist outcome is that people outside feel used as instruments.
When less advantaged peoples are invited in to make contributions to conversations on equity issues and then not engaged with, or have their contributions cherry picked, people feel used and space is opened up to create reactive divides. Immanuel Kant discusses instrumentalisation in terms of his formulation of the ‘categorical imperative’; in relation to cultural macro-pictures, should we be asking in relation to this line of thinking ‘what is the categorical demonstrative ?’ – i.e. what are the demonstrated values which are being rewarded ?
A part of this picture I believe is to be found in the research done on bias and the psychology of judgement. Here Pronin, Puccio and Ross discuss ‘Bias in Attributions Made About Self and Others’:
“Two much-researched attributional biases directly affect interpersonal misunderstanding and enmity. The first bias involves people’s tendency to underestimate the impact of situational or contextual factors on overt action, and as a result to make overly broad and overly ‘dispositional’ attributions about other actors (see Ross, 1977; Ross & Nisbett, 1991; also Jones, 1979, 1990). The second bias inolves the tendency for people to give greater weight to situational factors in assessing their own actions and outcomes than those of their peers (Jones & Nisbett, 1971; see also Gibert & Malone, 1995).
These attributional biases, we argue leave the ‘losers’ in the various struggles of our contemporary world (e.g., the homeless, workers victimized by the global economy, members of stigmatized minorities, and parties to ethnic strife) feeling doubly victimized. They feel victimized not only by the objective privations of their situations, but also by the assessments and suggested remedies offered by their victimizers and others who ‘do not understand the real situation’.
Furthermore, their own accounts of their travails and their proposals for redress are apt to provoke highly negative responses from those whose assistance they seek. These observers are apt to complain about the victims’ ‘refusal to accept any responsibility for their circumstances’ and ‘unwillingness to do anything to help themselves,’ and a downward cycle of misattribution and mistrust is likely to ensure that further compromises opportunities for collaborative problem solving”
[Page 640, Pronin, E., Puccio, C., Ross, L., (2002), Understanding Misunderstanding: Social Psychological Perspectives in Gilovich, ., Griffin, ., & Kahneman, . (2002). Heuristics and biases: The psychology of intuitive judgement. Cambridge [etc.: Cambridge University Press.]
The Public Values of BERA
I am interested in this encounter with BERA as it provides me an opportunity to observe corporate behaviour of the institution. As a registered charity – like universities in the UK – the imperative under charity law is to detail who the beneficiaries of the charitable work are and to detail how the work is helping the cited beneficiaries. In return for generating this public value the paying of taxes are waved.
BERA About us page (https://www.bera.ac.uk/about)
BERA is a membership association and learned society committed to advancing research quality, building research capacity and fostering research engagement. We aim to inform the development of policy and practice by promoting the best quality evidence produced by educational research.
Our vision is for educational research to have a profound and positive influence on society. We support this by promoting and sustaining the work of educational researchers. Our membership, which is more than 2,000 strong, includes educational researchers, practitioners and doctoral students from the UK and around the globe.
Founded in 1974, BERA has since expanded into an internationally renowned association. We strive to be inclusive of the diversity of education research and scholarship, and welcome members from a wide range of disciplinary backgrounds, theoretical orientations, methodological approaches, sectoral interests and institutional affiliations. We encourage the development of productive relationships with other associations within and beyond the UK.
We run a major international conference each year alongside a diverse and engaging series of events, and publish high quality research in our peer-reviewed journals, reports, book series and the groundbreaking BERA Blog. We recognise excellence through our awards and fellowships, provide grants for research, support the career development of our members, and nurture an active peer community organised around networks, forums and special interest groups.
BERA is a registered charity (no. 1150237) and is a company limited by guarantee, registered in England and Wales (company no. 08284220). We are governed by an elected council and managed by a small office team based in London.
The Charity Commission requires all its charities to report annually and these reports are made public on the Charity Commission website. Here are the income and expenditure details for the financial year ending 31 December 2019:
You can examine the annual reports here:
The Provokation: Where Does Widening Participation and Societal Valuation Fit ?
I have written this provokation to stimulate discussion as a non-academic (not a part of the formal education system) who over 11 years of practicing educational activities in the community context has regularly encountered citation of widening participation in conversations with academics.
Overwhelmingly I have found the notion of widening participation to be rendered in practice to a thin interpretation which is hamstrung by over riding financialised barriers. It all feels mickey mouse and CSR wall papering which not uncommonly gets thrown aside for cold hard cash or when someone from the outside attempt to engage the flimsy policies.
Formal education has become marketized and the valuation of knowledge beyond the academy overshaddowed simply because there are barriers put in place which ultimately involve how much money an individual has available to them and/or what status the individual is attributed. These obstructions to participation I do not associate necessarily to the individuals within education, who have ‘left the side door open’ on occasion for me and others to discretely skiff off the orbit of academic learning and teaching.
Indeed, it is obvious to me that a great number of people in pedagogical roles are driven by wanting to do something which is meaningful and beneficent in society. What I feel is worthwhile is scrutinising the notion of charity and who are the beneficiaries of said charitable structures – the UK universities and many associated organisations.
In context with the British Educational Research Association I offer in the question of where widening participation fits in British educational and research practice ? Can we as a society afford to exclude whole populations from educational valuation and participation in a community of peers ? If we view education as a public good which pertains to processes of human development, is the pre-requisit of having access to finance consonant to these values ? Is it better not to declare inclusive values rather than have pseudo-inclusive values ?
If education is a business which engenders maximising profits should universities and related organisational entities have charitable status or instead be paying taxes ? When people are being economically and work relatedly marginalized for lack of representation through a highly financialised qualifications system which generates professional enclosures, should their be mandated educational provision to ensure future collective prosperity.
I and many others continue to be learners, researchers and teacher/sharers in our own lives – in the interstices and cracks left uncolonized through a psychological, sociological and health related needs. As I encounter it education and learning are essential processes of human development. The work which I describe in the submitted abstract continues to develop as an important part of my reasoning in the world; the thesis will be published on the Ragged University website at a later date.
Education in the wild continues as a necessary evolutional imperative but people are feeling awefully left out – locked out – unlistened to. The most worrying thing in relation to this is that people, feeling jilted, abandon a relationship with the sum stock of human knowledge which is their legacy. What happens if people start to reject science or history or philosophy or medicine or law or literature or formal education etc ?
Thank you for reading – please leave any critical thoughts which might assist me in seeing what I am not picking up on (but need to)