Digitalising Clinical Guidelines: The Challenge of Patient's Preferences.

Will digitalised clinical guidelines be compatible with individualised and personalised patient care if the disease definitions and classifications used within them contain embedded preferences? Taking bone health as a case study, we found the dominant definition of osteoporosis installs the consensus preference judgement of a 1992 International Expert Committee in the form of a threshold cut-off on the bone mineral density continuum. We found that subsequent UK clinical guidelines follow suit on this diagnostic threshold, but also endorse preference-sensitive thresholds for interventions to prevent fractures, including ones underpinned by cost-effectiveness analysis. The resulting pre-emption of patient's preferences needs to be removed if 'computable' guidelines are to be reconcilable with personalised care.

The 'Reasonable Patient' of 2027: A Vision Paper.

The verdict of the UK Supreme Court in the case of Bellman versus Boojum-Snark Integrated Care Trust (2027) will have profound implications for medical practice, medical education, and medical research, as well as the regulation of medicine and allied healthcare fields. Major changes will result from the definition of person-centred care built into the expanded definition of informed and preference-based consent central to the judgment made in favour of Bellman's negligence claim. (For the avoidance of doubt this is a vision paper.

Taking the Patient's Preferences into Account in the Anticoagulation Decision: Largely Lip-Service?

Clinical guidelines for the assessment and management of atrial fibrillation emphasize the importance of taking the patient's preferences into account. A detailed examination of those from the National Institute for Excellence in Health and Social Care (NICE) raise serious questions about whether the recommendations embed preferences about crucial trade-offs that pre-empt those of the patient; do not stress the need to provide them with the information on option consequences necessary for them to become an informed patient; and characterise them as 'concordant' or 'discordant' rather than independently valid. American and European guidelines do not differ significantly in these respects.

Do Shared Decision-Making and Patient Decision Aids Take Patient's Preferences Seriously?

Most clinical guidelines for the assessment and management of atrial fibrillation emphasize the importance of decision support provided by Patients Decision Aids, but they are to be used and evaluated only in the context of Shared Decision-Making. Detailed examination of 10 clinical decision support tools reveals that many do not engage with patient's preferences at all. Only two take them seriously in terms of their formation, elicitation and processing, aimed at identifying the optimal personalised decision for the patient.

Will 'Computable' Clinical Guidelines Be Compatible with Personalised Care?

Introduction: The potential benefits from digitalisation processes will only be fully realised if the conceptual challenges they uncover are accepted and addressed, alongside the technical ones such as interoperability. Will 'computable' clinical guidelines be compatible with personalised care if the definition of the relevant disease embeds preferences that pre-empt those of the individual patient?

Method: As a case study we investigated the definition of diabetes in glycaemic management guidelines.

Result: The dominant component of its definition - HbA1c ≥6.

Inferring Causality Is Preference-Sensitive: We Need a Book of Who as Well as Why.

In multiple publications over 3 decades, most recently in The Book of Why, Judea Pearl has led what he regards as the 'causal revolution'. His central contention is that, prior to it, no discipline had produced a rigorous 'scientific' way of making the causal inferences from observational data necessary for policy and decision making. The concentration on the statistical processing of data, outputting frequencies or probabilities, had proceeded without adequately acknowledging that this statistical processing is operating, not only on a particular set of data, but on a set of causal assumptions about that data, often unarticulated and unanalysed.

Direct Measurement of Hexacontatetrapole, E6 γ Decay from ^{53m}Fe.

The only proposed observation of a discrete, hexacontatetrapole (E6) transition in nature occurs from the T_{1/2}=2.54(2)-min decay of ^{53m}Fe. However, there are conflicting claims concerning its γ-decay branching ratio, and a rigorous interrogation of γ-ray sum contributions is lacking.

The Causal Plausibility Decision in Healthcare.

The explosion of interest in exploiting machine learning techniques in healthcare has brought the issue of inferring causation from observational data to centre stage. In our work in supporting the health decisions of the individual person/patient-as-person at the point of care, we cannot avoid making decisions about which options are to be included or excluded in a decision support tool. Should the researcher's routine injunction to use their findings 'with caution', because of methodological limitations, lead to inclusion or exclusion? The task is one of deciding, first on causal plausibility, and then on causality.

Individualising Life Expectancy Is Necessary for Optimal Prescribing.

One possible cause of overprescribing (or insufficient deprescribing) is the failure to explicitly address the individual's life expectancy (LE). For example, if a LE estimate shows the person has six months to live, this should influence the prescribing of a medication that offers benefits only over a much longer LE. Predicting exactly the number of years a person will live is impossible, but probabilistic forecasting is possible and arguably essential, both for the selection of the optimal intervention and for meeting the 'reasonable patient' standard of information about the harms and benefits of alternative options.

Electric Monopole Transition from the Superdeformed Band in ^{40}Ca.

The electric monopole (E0) transition strength ρ^{2} for the transition connecting the third 0^{+} level, a "superdeformed" band head, to the "spherical" 0^{+} ground state in doubly magic ^{40}Ca is determined via e^{+}e^{-} pair-conversion spectroscopy. The measured value ρ^{2}(E0;0_{3}^{+}→0_{1}^{+})=2.3(5)×10^{-3} is the smallest ρ^{2}(E0;0^{+}→0^{+}) found in A<50 nuclei.

Communicating About Mortality in Health Decision Support: 'What and Why and When, and How and Where and Who'.

The Covid-19 pandemic has only accelerated the need and desire to deal more openly with mortality, because the effect on survival is central to the comprehensive assessment of harms and benefits needed to meet a 'reasonable patient' legal standard. Taking the view that this requirement is best met through a multi-criterial decision support tool, we offer our preferred answers to the questions of What should be communicated about mortality in the tool, and How, given preferred answers to Who for, Who by, Why, When, and Where. Summary measures, including unrestricted Life Expectancy and Restricted Mean Survival Time are found to be reductionist and relative, and not as easy to understand and communicate as often asserted.

Multicriteria Decision Support Would Avoid Overdiagnosis and Overtreatment.

Population-level studies confirm the existence of significant rates of overdiagnosis and overtreatment in a number of conditions, particularly those for which the screening of asymptomatic individuals is routine. The implication is that the possibility of being overdiagnosed and/or overtreated must be mentioned as a possible harm in generating informed consent and participation from the individual invited to be screened. But how should the rates of such preference-insensitive population-level phenomena be introduced into preference-sensitive individual decision making? Three possible strategies are rejected, including the currently dominant one that involves presenting the rates relevant to overdiagnosis and overtreatment as discrete pieces of information about a single criterion (typically condition-specific mortality).

Measures of Decision Aid Quality Are Preference-Sensitive and Interest-Conflicted - 2: Empirical Measures.

Empirical measures of 'decision aid quality', like normative ones, are of a formative construct and therefore embody interest-conflicted preferences in their criteria selection and weighting. The preferences of the International Patient Decision Aid Standards consortium distinguish the quality of the decision-making process and the quality of the choice that is made '(i.e.

Measures of Decision Aid Quality Are Preference-Sensitive and Interest-Conflicted - 1: Normative Measures.

The belief that following rigorous inclusive methods will eliminate bias from 'quality' measures ignores the preferences necessarily embedded in any formative instrument. These preferences almost always reflect the interests of its developers when one uses the wide definition of 'interest' appropriate in healthcare research and provision. We focus on the International Patient Decision Aid Standards instrument, a popular normative measure of decision aid quality.

People Living with Multiple Long-Term Conditions: Meeting the Challenges of Personalized Decision Making.

As with any diagnosis, the underlying purpose of a 'multimorbidity' one is to identify and establish the impact of a person's health conditions on their lives and to facilitate personalized decisions regarding proposed interventions. Clinicians routinely make decisions about the use of interventions for people with multiple long-term conditions. This is challenging because evidence to support this process currently relies on guidance on single health conditions for people without multimorbidity, typically taking fewer medications.

Evaluations of Decision Support Tools Are Preference-Sensitive and Interest-Conflicted: The Case of Deliberation Aids.

The questions 'What constitutes a good health care decision?', and, by extension, 'What constitutes good healthcare decision support?' continue to be asked. The most developed answers focus largely, often exclusively, on the quality of the 'deliberation' component as the determinant of the quality of the decision or decision aid. We argue that these answers and resulting aids reflect the preferences of healthcare professionals and aid developers and that these preferences are closely aligned with their interests.

COVID-19, the Swedish 'Experiment', and Me.

In this personal vision paper the Swedish approach to COVID-19 prompts an exploration of how and why assuming individual rationality coupled with minimal social restriction may be as good a solution as any and better than most. A COVID sub-model is developed and populated with probabilities for four outcomes of infecting another person (asymptomatic, sick, hospitalized, dead), conditional on three observable characteristics (sex, age, and BMI), and (dis)utilities for three categories of person (nearest/dearest, friends/colleagues and unknown others) experiencing those outcomes. The implications for a liberal democracy are drawn, based on the assumptions that individual citizens will and should maximise their informed expected utility, exhibiting 'commons sense' as well as common sense.

Decision Quality Is a Preference-Sensitive Formative Concept: How Do Some Existing Measures Compare?

The primary output of a decision making process is a decision and a key outcome measure is therefore decision quality. However, being a formative construct, 'decision quality' is both preference- and context-sensitive and legitimate alternative measures accordingly exist. A decision maker wishing to measure decision quality in the evaluation of a decision or decision making process needs to be aware of the attributes of the measures on offer.

Are Clinical Decision Support Systems Compatible with Patient-Centred Care?

Few, if any, of the Clinical Decision Support Systems developed and reported within the informatics literature incorporate patient preferences in the formal and quantitatively analytic way adopted for evidence. Preferences are assumed to be 'taken into account' by the clinician in the associated clinical encounter. Many CDSS produce management recommendations on the basis of embedded algorithms or expert rules.

A Generic Rapid Evaluation Support Tool (GREST) for Clinical and Commissioning Decisions.

A fast and frugal generic tool can provide decision support to those making decisions about individual cases, particularly clinicians and clinical commissioners operating within the budget and time constraints of their practices. The multi-national Generic Rapid Evaluation Support Tool (GREST) is a standard preference-sensitive Multi-Criteria Decision Analysis-based tool, but innovatory insofar as an equity criterion is introduced as one of six. Equity impact reflects the number of population QALYs lost or gained in moving from Old (current intervention) to New (contemplated intervention).

The Evaluation of Decision Support Tools Needs to Be Preference Context-Sensitive.

Individuals have different preferences in how they wish to relate to healthcare professionals such as doctors. Given choice, they also have preferences in relation to the type and location of support they want for their health and healthcare decisions. We argue that preference-based clusters within this heterogeneity constitute different contexts and that evaluations of decision aids should be context-sensitive in this respect.

PROMs Need PRIMs: Standardised Outcome Measures Lack the Preference-Sensitivity Needed in Person-Centred Care.

A growing number of condition-specific standard outcome sets have been developed by the International Consortium for Health Outcomes Measurement in pursuit of 'value-based care'. These sets embrace many Patient-Reported Outcome Measures (PROMs), reflecting a simultaneous commitment to 'patient-centred care'. However, none of these sets embody recognition of the preference-sensitive nature of the decisions that eventually generate the outcome database.

Why a Global PROMIS® Can't Be Kept.

Composite multi-dimensional constructs, such as 'global mental health' and 'global physical health', in PROMIS® instruments and ICHOM standard outcome sets, are formative, not reflective. Their preference-insensitivity means they are potentially misleading in both clinical and policy decision making practice. Their frequent validation by reflective psychometric tests is also improper methodologically.

Strong Recommendations Are Inappropriate in Person-Centred Care: The Case of Anti-Platelet Therapy.

A 'Rapid Recommendation' has been produced by the GRADE group, in collaboration with MAGIC and BMJ, in response to an RCT showing Dual Anti-Platelet Therapy (DAPT) is superior to Aspirin alone for patients who had suffered acute high risk transient ischaemic attack or minor ischaemic stroke. The interactive MAGIC decision aid that accompanies each Rapid Recommendation is the main route to their clinical implementation. It can facilitate preference-sensitive person-centred care, but only if a Multi-Criteria Decision Analysis-based decision support tool is added.

Risk Classifications Interfere with Preference-Sensitive Decision Support.

Many guidelines for prevention and treatment still locate persons in risk classes (e.g. low, moderate, high) on the basis of thresholds placed on a continuous metric for a single criterion (e.