Truth, simplicity, and personalization

Sarah Wieten, Thinking about guidelines:

I was glad to participate in the CauseHealth conference planning meeting October 24th 2016 in London. In the aftermath of the meeting, I was happy to share these brief notes with Sam.

I noticed that the group as a whole seemed very interested in discussing the nature of truth. I was somewhat surprised by this because it can be very abstract work. This is the sort of topic which might be very strictly in the purview of philosophers, and I worry none of us there were the right people to deliver on that topic. If that is what will help the general project of producing better and more useful guidelines, and is a component that others expect we (as philosophers) will be able to talk about, perhaps we should be sure to invite some philosophers that do in fact study that to the conference.

Wrapped up with the hope that philosophers might be able to sort out what truth was the hope that we could say what exactly is bias. There seemed to be uncertainty about how much intentions might matter for whether something was biased or not. It was noted that bias was different than ignorance and that one could be biased without meaning to or without committing fraud, but there was still a bit of a puzzle about why bias was chosen to be the category with which we talked about these various epistemic failures.

I also was excited about a point brought up in the discussion of guidelines, questioning if being “easy to use” was in fact a virtue, as is generally assumed. I wondered if this might fruitfully be linked to the literature in the philosophy of science which questions “simplicity” as an obvious epistemic virtue.

Another question which was raised and I think merits future consideration was, “Is it possible to write guidelines for personalized medicine?” The idea here seems to be that there is something incompatible between insisting that all interventions be indexed to particular individuals and the goal of guidelines, which is to produce widely generalizable population-level advice. However, I wonder how much of this seeming incompatibility might fall away if it becomes clear that the intense personalization promised by personalized medicine is mostly public relations-the best that can be done is to get data from more specific populations and deliver interventions to those specific populations.

Generally it was a vibrant and enjoyable meeting with many important current controversies discussed from a variety of perspectives. I look forward to the upcoming conference.

Guidelines in situ

Fiona Moffatt, Thinking about guidelines:

My research interest lies predominantly in the notion of knowledge translation, exploring the complex, non-linear relationship between what is ‘known’ and what is subsequently ‘done’. I understand evidence based guidelines and evidence based policy as key rhetorical devices (or technologies) bridging the liminal space between empirical knowledge and clinical practice. My methodological perspective is however, strongly influenced by the sociological discipline of STS, whereby all technologies are contingent, i.e. rejecting technological determinism.

Science and technology are social activities, and the agents (researchers, technologists, healthcare professionals, patients) are members of communities trained in certain practices and with immanent virtues, values and beliefs. Consequently, the resultant interpretations of knowledge are complex and various. Claims, theories, facts and artefacts have very different meanings to different audiences.

Evidently, I am therefore interested in the social construction of knowledge. At a crude level we can ask ourselves,

‘do evidence based guidelines/policies normalise in practice?’ and

‘what are the sociocultural moderators?’

Much work has been undertaken in this field – in my own work I have developed understanding about the influence of governance arrangements, power, neoliberalism, identity, prevailing logics of professionalism, compatibility with existing practice etc. However, what I believe remains under explored is an exposé of the ways in which ‘evidence’ is cognitively appraised. What can we say about evidential pluralism? What are the various epistemological and ontological assumptions between professions, and what are the resultant power dynamics produced? How can healthcare professionals navigate their ultimate position – in what ways do they modify or re-interpret the evidence to match their own philosophical assumptions and reconcile this with the perceived needs of their healthcare context? Could a dispositionalist approach help us to better understand this process? And could this knowledge then impact upon a re-conceptualisation of EBM?

Challenges to come

Roger Kerry, Thinking about guidelines:

My take home thoughts:

What is the real world, clinical role of guidelines? (provoked by Jeremy Howick’s suggestion that guidelines shouldn’t make recommendations, Sarah Weiten’s talk on values and mechanisms, and Sieste Wieringa’s talk on induction and reasoning)

Can a more holistic conceptualisation of causation really be integrated into guidelines which take population data as central to their development? (provoked by Stephen Mumford and Rani Anjum’s comments of the background philosophy of causation, as well as Karin Engebretsen and Elena Rocca’s talks on diagnosis and bench study data)

Can a guideline and evidence-based system truly move beyond hierarchies? (provoked by NICE’s Beth Shaw review of multiple evidence sources and their integration into guideline development. A beautiful talk, but I still think there is hierarchy at the core when push comes to shove. Show me I’m wrong!)

What is the future of implementation, governance, abuse-control strategies for guidelines? (provoked by Fiona Moffatt’s, Mary Chambers’, and Samantha Copeland’s highly informed musings on things from deep sociological concerns to PPI and the reality of the clinical shop-floor, and analogical thinking)

The planned conference for next year should turn out to be a hot-bed of challenge, controversy, and progress for all.

The Notion of Guideline

Stephen Mumford, Thinking about guidelines:

I was particularly interested in different models of decision making and the implicit assumptions we make about how this should work. In particular, the notion of a guideline seems up for grabs and I think it important that we do not inadvertently slip into one way of operating guidelines without philosophically scrutinising the idea. It would be easy, for instance, to interpret a guideline as a general rule, along the lines of ‘thou shalt not kill’. This sort of rule is interpreted as strict and exceptionless. The workshop confirmed that, irrespective of any intentions of those who write guidelines, there are pressures to follow them exactly. Failure to do so is often taken as a failure that leaves a clinician liable for any subsequent unfavourable outcome.

In moral philosophy, the idea that right and wrong can be defined by a system of rules has been challenged. If nothing else, it’s obvious that two rules could easily come into conflict and one of them has to be sacrificed. Telling the truth is good but not necessarily if a killer asks for the whereabouts of any intended victim. There could be circumstances in which it is right to lie. In response, Dancy proposed a theory of moral particularism, a view in which each situation has to be understood as complex and requiring its own moral assessment, which could well be unique and unrepeatable. I would favour coupling this with a strongly dispositional version of virtue ethics. Telling the truth tends to be right but not necessarily so. Assessing the whole complex of circumstances might weigh in favour of lying.

Now I think the issue of how to understand and use a guideline clearly relates to this discussion. We could interpret a guideline in a dispositional way rather than as an absolute rule. A particular intervention may tend to relieve a particular symptom but in many contexts it need not be the right intervention to prescribe. If this is right, I think it would be to the benefit of all stakeholders – clinicians, guideline bodies, regulatory authorities, and patients – to understand dispositionalism and particularism. This could be a challenge when rule-based laws and codes of ethics are easy to grasp, but there is a potential benefit to be gained from pushing ahead for a conceptual change.

 

Ethics of Reduction

Karin Engebretsen, Thinking about guidelines:

The question that is still with me after the workshop is how the naturalist paradigm might affect the “political correct” attitude towards patients suffering from medically unexplained syndromes.

If the political decision makers within the medical field believe in the biomedical model as the provider of the best medical practice, their “worldview” will automatically, influence the complete medical system.

The biomedical model excludes psychological and social factors and includes only biological factors in an attempt to understand a person’s medical illness or disorder. Thus, the biomedical model have a limited, reductionist attitude that divide the human body into separate elements focusing on biological factors. Patients often seem to have a unique expression of their symptoms and a unique combination of biological, social and psychological overlapping symptoms. So how do reductionism and dualism affect clinical guidelines and diagnosing related to medically unexplained syndromes?

I see this question as related to ethical issues in medical practice and I hope there will be more focus on this fact as a critical mechanism.

How Decisions are Made

Elena Rocca, Thinking about guidelines:

I was interested in a question that Sietse threw at us many times: what should be the purpose of a guideline? What does “helping to make a good decision” mean?

We got some inputs about it throughout the whole day: it might mean including the patient view, or reporting only the evidence with no recommendation, or giving recommendation but being transparent about which evidence was considered and how it was judged, or again, as Sietse suggested, it might mean to explain what is “to make an inference”, what happens when a clinical decision is made. I was particularly interested in this last suggestion, and I felt it remained a bit “in the air”. Does it mean that we would need a guideline about the decision process? About the implicit and sometimes unaware stand that the clinician takes by valuing one or the other evidence, following the guideline versus personal judgement?

Real v Ideal Guidelines

Rani Lill Anjum, Thinking about guidelines:

I was really interested in the questions of how guidelines could include more leeway for the health professional. Rigid guidelines offering cost efficient solutions (e.g. 15 minutes per patient, or 30) emphasises the rule utilitarian approach and makes it difficult to use judgement and experience to give the best health service for the individual patient. If the patient represents at least as much of the causally relevant evidence (medical history, genetics, life situation, etc.) as population data, then how come the latter is given epistemic priority?

I thought that there were many good intentions behind the guidelines, but also a wide range of interests depending on who commissioned the guideline and what they want to use it for. This is why I thought the tension between real and ideal is important. New public management emphasises top down management, controlling, reporting, standardisation and efficiency. In the clinical setting, this approach might create chronic illness, if we simply treat or test the symptoms that the patient reports. Those who work on the importance of patient context and stories (Trish, Matt, Brian, Anna-Luise) have important knowledge to share, and show also that the most efficient treatment of such illness is to take more time with the patient to figure out what is actually wrong before offering an intervention or a test. Why could this not be in guidelines about chronic illness, MUS and comorbidity? Then we would also avoid reductionism and dualism of treatment.