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"Six ‘biases’ against patients and carers in evidence-based medicine"

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
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http://www.biomedcentral.com/content/pdf/s12916-015-0437-x.pdf
(Open access)


Six ‘biases’ against patients and carers in evidence-based medicine
Trisha Greenhalgh*, Rosamund Snow, Sara Ryan, Sian Rees and Helen Salisbury

Author Affiliations

Nuffield Department of Primary Care Health Sciences, University of Oxford, New Radcliffe House, Radcliffe Observatory Quarter, Woodstock Road, Oxford OX2 6GG, UK

BMC Medicine 2015, 13:200 doi:10.1186/s12916-015-0437-x

The electronic version of this article is the complete one and can be found online at: http://www.biomedcentral.com/1741-7015/13/200


Received: 12 May 2015
Accepted: 24 July 2015
Published: 1 September 2015
© 2015 Greenhalgh et al.

Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Abstract
Background
Evidence-based medicine (EBM) is maturing from its early focus on epidemiology to embrace a wider range of disciplines and methodologies. At the heart of EBM is the patient, whose informed choices have long been recognised as paramount. However, good evidence-based care is more than choices.

Discussion
We discuss six potential ‘biases’ in EBM that may inadvertently devalue the patient and carer agenda: limited patient input to research design, low status given to experience in the hierarchy of evidence, a tendency to conflate patient-centred consulting with use of decision tools; insufficient attention to power imbalances that suppress the patient’s voice, over-emphasis on the clinical consultation, and focus on people who seek and obtain care (rather than the hidden denominator of those that do not seek or cannot access care).

Summary
To reduce these ‘biases’, EBM should embrace patient involvement in research, make more systematic use of individual (‘personally significant’) evidence, take a more interdisciplinary and humanistic view of consultations, address unequal power dynamics in healthcare encounters, support patient communities, and address the inverse care law.
 

ahimsa

ahimsa_pdx on twitter
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... and focus on people who seek and obtain care (rather than the hidden denominator of those that do not seek or cannot access care).

Very important point. Those who are undiagnosed, those who can't get the right tests (blocked by doctors or insurance rules), those who can't afford certain treatments, those who have just given up trying to get health care (not believed, too hard to make it to doctor) -- the list goes on and on.

I have not yet read the article but it looks interesting. Thanks for posting!
 

Dolphin

Senior Member
Messages
17,567
Table 1 has a lot of the more interesting points (indeed I'm not sure whether all the points in the Table are made in the text?)
http://www.biomedcentral.com/1741-7015/13/200/table/T1
Greenhalgh Table 1 Six ‘biases’ against patients and carers in evidence-based medicine.png
 

Dolphin

Senior Member
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17,567
I think this would be relevant to ME/CFS and say the focus on fatigue:
Most published research had minimal patient input

Example: evidence relates to options and outcome measures that patients themselves would not have chosen

The available menu of evidence-based choices reflects a biomedical framing and omits options that might be more acceptable and effective

Patient and public input to setting research priorities, study design, choice of outcome measures, and interpretation and dissemination of findings must be prioritised and effectively resourced

They do give the impression that things may be changing
e.g.
The transition from ‘outcomes that matter to researchers’ to ‘outcomes that matter to patients’ has fuelled (and been fuelled by) the rapidly expanding science of patient-reported outcome measures – standardised instruments developed via systematic surveys of people who have the condition being researched 26]. Factoring in the patient perspective in trial design is an important step forward. Nevertheless, patient-reported outcome measures and similar instruments – which effectively give us patients’ priorities ‘on average’ – can never fully capture the situated, fluctuating granularity of what matters most to a particular patient and carer at a particular point in the illness journey (including why the person has or has not consulted the clinician at a key decision point).
 

Dolphin

Senior Member
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17,567
One could imagine this could be relevant with some appointments on ME/CFS e.g. therapists prescribing exercise and the like.
4. Power imbalances may suppress the patient’s voice

Much of the patient’s agenda will not get aired in the consultation

Advice that is given, and management plans that are ‘agreed’, may be ignored (but may be inappropriate anyway since they are based on a partial picture)

Working with social and political scientists, EBM researchers should collect and apply evidence on how to make consultations more democratic (see main text for examples)
 

Dolphin

Senior Member
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17,567
Much of the EBM literature relies on (and its practitioners must to some extent accept) fixed categories and definitions of what a disease is. Qualitative research can inform new categories and definitions if researchers are open to this possibility. Patients with depression, for example, who took selective serotonin reuptake inhibitors, were ignored for years after they raised concerns about side effects such as‘electric head feeling’ that did not fit the existing‘evidence-based’ model of the drug’s effects or the formal categories of adverse events used in standardised post-marketing surveillance [36]
 

Dolphin

Senior Member
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17,567
One reason for the limited success of decision aids is that the patient is not a dispassionate information processer. In contrast to the autonomous rational chooser assumed in EBM’s decision trees, we make many of our life choices for reasons other than effectiveness or efficiency–for example, because we think a particular option would fit in with family plans, align with cultural expectations of good parenting, or honour the memory of an ancestor [3–5]. Unless these reasons are recognised as primary drivers of human behaviour, clinician and patient will be at cross-purposes.

This reminds me of quite a few of the quotes in the ME Association CBT/GET/Pacing survey
http://www.meassociation.org.uk/2015/05/23959/

Some people were saying the plans did not fit in with their responsibilities e.g. as a single parent.

And more generally I think the very regimented management programs with lots and lots of fixed rested periods across a day and a lot of energy being used up on exercising do not fit in with a lot of the responsibilities and preferences patients with ME/CFS have.
 

Dolphin

Senior Member
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There is strong and consistent evidence that the success of the evidence-based consultation depends on its humanistic elements as much as on what information is shared and how. It is nearly 30 years since family medicine introduced the ‘patient centred clinical method’ [41, 42], summarized in a recent review as: “the adoption of a biopsychosocial [incorporating EBM, psychology and attention to social context] perspective by providers; the sharing of decisions and responsibilities between patients and providers; the strengthening of practitioners’ compassion, sensitivity to patients’ distress and commitment to respond to patients with empathy in an effort to alleviate suffering.”[43].

I get the impression that this is missing from many appointments people with ME/CFS have (perhaps particularly when a biopsychosocial approach is brought to the consultation).
 

Dolphin

Senior Member
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However, even when patients have greater knowledge about their condition than the doctor treating them, the power dynamic is such that the doctor’s (in this example, weaker) evidence tends to trump the patient’s (in this example, stronger) evidence–and the former may succeed in defining the latter as ‘non-compliant’ [10, 50]. In one qualitative study of people with type 1 diabetes, although specialist doctors supported “participatory decision making” and empowerment of patients, they frequently discounted patients’ experiential knowledge and withheld resources that would allow patients to make truly informed decisions [51].
One could see that happening sometimes with ME/CFS.

Examples from these studies included doctors dismissing symptoms that were not explained by blood tests, ignoring patient experience that did not correspond to textbook descriptions, using medical jargon to re-establish a position of power, and actively withholding information or services. Patients learnt to conceal their own expertise and treatment decisions in order to comply with medical expectations and to avoid professionals becoming “patronizing or angry”[50, 51]. All these might be considered as examples of what has been called ‘epistemic injustice’–that is, the numerous and often subtle ways in which patients may be dismissed in their specific capacity as knowers [52].
 

Dolphin

Senior Member
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First, we are highly social and mutually dependent beings. Our interactions with medicine often involve others (who may be present or absent during the consultation) [62, 63]. Managing a chronic illness involves work, which is typically distributed across a network of family and friends [3, 8, 31, 64–66]. Doctors generally know this, but their ‘evidence-based’ discussions with patients about the options for tests and treatments rarely take full account of which people and perspectives the patient would like to bring into the conversation, when, and how; this is of more than tangential significance. Older couples, for example, may be managing various conditions and other life problems concurrently, and may develop a hierarchy of priority. In such circumstances,‘being ill’ becomes a negotiated position depending on one’s responsibilities and commitments to others [3, 64].
Not sure whether this is exactly what the authors have in mind but I could see somebody avoiding or postponing having surgergy because of responsibilities they have to others.
 

Dolphin

Senior Member
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17,567
Second, the overwhelming majority of decisions about a person’s chronic condition are made by that individual, their carer(s), and their lay networks without the input of professionals [10, 67]. The knowledge of how to manage one’s own illness overlaps only partially with the knowledge that doctors draw on to manage diseases; it also includes the embodied, tacit knowledge of particular symptoms and the body’s response to treatment[3,68]. Some decisions (such as which drug to take, if any) may be best shared with one’s clinician; others (such as how to tell one’s employer about illness or how to cope emotionally with stigma) may be better shared with friends or fellow patients. Tacit knowledge is the stuff of communities of practice–accumulated through years of experience and exchanged through stories [69–71]. A particularly revealing genre of patient narrative is doctors’stories of their own illness journeys–in which they reveal how little they knew about their condition before experiencing it themselves, and how much they learned, often slowly and tangentially, from hearing or reading stories from other patients [72–75]
 

Dolphin

Senior Member
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Hence, EBM’s accumulating body of (explicit, research-based) knowledge and the (informal, tacit, and socially shared) knowledge actually being used by people managing their condition are developing separately rather than in dialogue with one another.
 

Dolphin

Senior Member
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As Hart argued decades ago in his paper ‘The Inverse Care Law’, because of the distorting and mutually reinforcing impact of the social determinants of health (such as poverty, low health literacy, social exclusion, and so on), and the limiting impact of illness itself on people’s physical and mental capacity, individuals most in need of healthcare are least likely to seek it or receive it89].
 

Snowdrop

Rebel without a biscuit
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This reminds me of quite a few of the quotes in the ME Association CBT/GET/Pacing survey
http://www.meassociation.org.uk/2015/05/23959/

Some people were saying the plans did not fit in with their responsibilities e.g. as a single parent.

And more generally I think the very regimented management programs with lots and lots of fixed rested periods across a day and a lot of energy being used up on exercising do not fit in with a lot of the responsibilities and preferences patients with ME/CFS have.

Yes, this is a health management system based on a theoretical person in a void. With no past and no future the theoretical person can fit quite nicely without any fuss and bother into the Dr's busy schedule. No need to consider the person in the void an actual being with a life with meaning beyond accepting medical help. To them you exist only in the moment--makes it sound almost buddhist except for the implications.
 

Dolphin

Senior Member
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The conceptual frames of EBM effectively configure the patient as an autonomous rational chooser, a model that does not readily translate into the everyday lives of real patients – multifaceted individuals with physical, cognitive, emotional, and social dimensions, who lead messy, idiosyncratic, networked, and often complicated lives in contexts that are shaped by cultural, economic, and political forces.