By Sara Filoche, Peter Stone, Fiona Cram, Sondra Bacharach, Anthony Dowell, Dianne Sika-Paotonu, Angela Beard, Judy Ormandy, Christina Buchanan, Michelle Thunders, and Kevin Dew
Have you ever been a patient where you felt that a healthcare practitioner was merely talking at you, rather than with you? Or that your opinion (or value) didn’t count? If you are a healthcare practitioner, do you share information with your colleagues and patients equitably? Or have you ever been talked down-to when seeking information? If you can recall such encounters, then you may have experienced an epistemic injustice – more specifically, informational prejudice.
Our work falls under the umbrella of Miranda Fricker’s notion that harm can be done to another person in their capacity as a knower. When someone is not perceived as having the capacity to understand information by another, this affects how, what, and if information is shared between them – in other words, they experience informational prejudice. We take the position that both practitioners and patients are vulnerable to epistemic injustice (and thus experience informational prejudice) owing to prevalent negative stereotypes and certain structural features of contemporary healthcare practice. Our journey to this position comes from our experiences in our respective fields of indigenous and health research, epistemology and medical sociology – where, in reference to new molecular technology, we have frequently heard comments such as “oh well they won’t understand” or “I don’t have time to explain it to them”. Where the they and them can be in reference to either and/or both ‘certain’ practitioners and patients. Such biases and position are bound to have an impact on meeting our health care ideal of enabling people to make an informed choice in their decision to undergo testing or not.
Our work presents two salient concepts to consider when thinking about (in)equity in access to new molecular tests: In the Know (or not) and More than Money.
Concept 1. In the Know (or not). At its very simplest distillation, you either know about a test or you don’t. The question we want to answer is – how do people (both those receiving and giving care) get in the know? Answering this question goes beyond simply asking practitioners about what they read, or what conferences they attend. We need to better understand the social relationships and institutional structures in the context of the healthcare system they work in, and who shares information about new technologies and with whom – and why. We also need to better understand people’s experience of being informed about a test. Frequently, people’s understanding is measured against a highly medicalised framework (which, unless they themselves have undergone medical training or similar, are not likely to “pass” and therefore the epistemic injustice is present from the outset). Information sharing is fundamentally a social phenomenon, so it is fitting that we apply sociological methodologies, which can better study how knowledge sharing is impacted by social relations and structures at work in the healthcare system. Such methods would explain how some people become knowledge brokers – and can hold onto information to maintain a “special” position; the phenomenon of knowledge brokers would also explain why only certain people may be offered the test – and thereby perpetuate informational prejudices which effectively deny others the opportunity to benefit from any advantages that the new test affords.
Concept 2. More than money. While money does talk and is a significant driver of inequity – inequity is more complex than the cost of the test. Around the world, when new molecular technologies come to market, they do so with a price tag that is borne out at varying levels by the patient. This has the effect of placing the practitioner (if they know about the test) in the position of a gatekeeper to the new test – so (how) do they offer it to the person in front of them? If, as we are promised, the cost of molecular testing decreases, then a financial driver of inequity is also reduced. But, until we address the issue of how people become In The Know, the risk of experiencing information prejudice remains.
Our hope is that by uncovering social structures and experiences of informational prejudice, we will be able to affect changes to the healthcare system within which these new technologies will be, and are, accessed.
Author(s): Sara Filoche,1* Peter Stone,2 Fiona Cram,3 Sondra Bacharach,4Anthony Dowell,5 Dianne Sika-Paotonu,6 Angela Beard,7 Judy Ormandy,8 Christina Buchanan,9 Michelle Thunders,6 and Kevin Dew10
1Department of Obstetrics, Gynaecology and Women’s Health and Department of Pathology and Molecular Medicine, University of Otago Wellington, New Zealand
2Department of Obstetrics and Gynaecology, The University of Auckland, Auckland, New Zealand
3Katoa Ltd, New Zealand
4Philosophy Programme, Victoria University, Wellington, New Zealand
5Department of Primary Health Care and General Practice, University of Otago Wellington, New Zealand
6Department of Pathology and Molecular Medicine, University of Otago Wellington, New Zealand
7Christchurch Obstetric Associates, Christchurch, New Zealand
8Department of Obstetrics and Gynaecology, University of Otago Christchurch, New Zealand
9Faculty of Medical and Health Sciences, The University of Auckland, Auckland, New Zealand
10School of Social and Cultural Studies, Victoria University, Wellington, New Zealand
Competing interests: None