Creating and administering video vignettes for a study examining the communication of diagnostic uncertainty: methodological insights to improve accessibility for researchers and participants.

BACKGROUND: Studying clinician-patient communication can be challenging, particularly when research seeks to explore cause-and-effect relationships. Video vignettes - hypothetical yet realistic scenarios - offer advantages to traditional observational approaches by enabling standardisation and manipulation of a clinician-patient encounter for assessment by participants. While published guidelines outline stages to create valid video vignette studies, constructing high quality vignettes which are accessible to a wide range of participants and feasible to produce within time and budget restraints remains challenging. Here, we outline our methods in creating valid video vignettes to study the communication of diagnostic uncertainty. We aim to provide practically useful recommendations for future researchers, and to prompt further reflection on accessibility issues in video vignette methodology. METHODS: We produced four video vignettes for use in an online study examining the communication of diagnostic uncertainty. We followed established guidelines for vignette production, with specific consideration of how these might be applied pragmatically to save time and resources. Scripts were pilot-tested with 15 laypeople, and videos with 14 laypeople; pilot-testing involved both quantitative and qualitative analysis. RESULTS AND DISCUSSION: We demonstrate the usefulness of existing guidelines, while also determining that vignette production need not necessarily be expensive or time-consuming to be valid. Our vignettes were filmed using an iPhone camera, and featured a physician rather than a professional actor; nonetheless, pilot-testing found them to be internally and externally valid for experimental use. We thus propose that if care is taken in initial script development and if pragmatic choices are made regarding filming techniques and pilot-testing, researchers can produce valid vignettes within reasonable time and budget restraints. We also suggest that existing research fails to critically examine the potential benefits and harms of online video vignette methodology, and propose that further research should consider how it can be adapted to be inclusive of those from underserved backgrounds. CONCLUSIONS: Researchers creating video vignette studies can adapt the video vignette development process to suit time and budget constraints, and to make best use of available technology. Online methods may be harnessed to increase participant accessibility, but future research should explore more inclusive vignette design.

What is in the toolkit (and what are the tools)? How to approach the study of doctor-patient communication.

Doctor-patient communication is important, but is challenging to study, in part because it is multifaceted. Communication can be considered in terms of both the aspects of the communication itself, and its measurable effects. These effects are themselves varied: they can be proximal or distal, and can focus on subjective measures (how patients feel about communication), or objective measures (exploring more concrete health outcomes or behaviours). The wide range of methodologies available has resulted in a heterogeneous literature which can be difficult to compare and analyse. Here, we provide a conceptual approach to studying doctor-patient communication, examining both variables which can controlled and different outcomes which can be measured. We present methodologies which can be used (questionnaires, semistructured interviews, vignette studies, simulated patient studies and observations of real interactions), with particular emphasis on their respective logistical advantages/disadvantages and scientific merits/limitations. To study doctor-patient communication more effectively, two or more different study designs could be used in combination. We have provided a concise and practically relevant review of the methodologies available to study doctor-patient communication to give researchers an objective view of the toolkit available to them: both to understand current research, and to conduct robust and relevant studies in the future.

Patient understanding: How should it be defined and assessed in clinical practice?

In order for patients to make autonomous decisions in a healthcare setting, they must understand relevant information. There is, however, a lack of consensus on how understanding should be defined or assessed in this context, despite the fact that in practice doctors are regularly required to judge whether a patient has understood medical information. Current accounts of patient decision-making often focus on the information which needs to be disclosed to the patient to support their autonomous decision-making. Far less attention has been afforded to questions about how we might determine whether a patient has understood the information disclosed to them. Theoretical approaches to the concept of understanding in this context, and practically useful frameworks for assessing it, are lacking. In this paper, I use a number of hypothetical clinical situations to explore the conditions that are required for a patient to adequately understand information in medical decision-making. Drawing upon the wider philosophical literature, I propose a number of criteria which are necessary for understanding in a medical context: patients must (1) grasp a body of information which (2) reasonably reflects a responsible body of medical professionals' best estimate of the truth, (3) to a degree which meets a context-specific threshold. These criteria may be helpful in guiding assessments of patient understanding in clinical practice.

Guiding organisational decision-making about COVID-19 asymptomatic testing in workplaces: mixed-method study to inform an ethical framework.

BACKGROUND: Workplace programmes to test staff for asymptomatic COVID-19 infection have become common, but raise a number of ethical challenges. In this article, we report the findings of a consultation that informed the development of an ethical framework for organisational decision-making about such programmes. METHODS: We conducted a mixed-method consultation - a survey and semi-structured interviews during November-December 2020 in a UK case study organisation that had introduced asymptomatic testing for all staff working on-site in its buildings. Analysis of closed-ended survey data was conducted descriptively. An analysis approach based on the Framework Method was used for the open-ended survey responses and interview data. The analyses were then integrated to facilitate systematic analysis across themes. Inferences were based on the integrated findings and combined with other inputs (literature review, ethical analysis, legal and public health guidance, expert discussions) to develop an ethical framework. RESULTS: The consultation involved 61 staff members from the case study organisation (50 survey respondents and 11 interview participants). There was strong support for the asymptomatic testing programme: 90% of the survey respondents viewed it as helpful or very helpful. Open-ended survey responses and interviews gave insight into participants' concerns, including those relating to goal drift, risk of false negatives, and potential negative impacts for household members and people whose roles lacked contractual and financial stability. Integration of the consultation findings and the other inputs identified the importance of a whole-system approach with appropriate support for the key control measure of isolation following positive tests. The need to build trust in the testing programme, for example through effective communication from leaders, was also emphasised. CONCLUSIONS: The consultation, together with other inputs, informed an ethical framework intended to support employers. The framework may support organisational decision-making in areas ranging from design and operation of the programme through to choices about participation. The framework is likely to benefit from further consultation and refinement in new settings.

Mixed-methods exploration of views on choice in a university asymptomatic COVID-19 testing programme.

Asymptomatic COVID-19 testing programmes are being introduced in higher education institutions, but stakeholder views regarding the acceptability of mandating or incentivizing participation remain little understood. A mixed-method study (semi-structured interviews and a survey including open and closed questions) was undertaken in a case study university with a student testing programme. Survey data were analysed descriptively; analysis for interviews was based on the framework method. Two hundred and thirty-nine people participated in the study: 213 in the survey (189 students, 24 staff), and 26 in interviews (19 students, 7 staff). There was majority (62%) but not universal support for voluntary participation, with a range of concerns expressed about the potentially negative effects of mandating testing. Those who supported mandatory testing tended to do so on the grounds that it would protect others. There was also majority (64%) opposition to penalties for refusing to test. Views on restricting access to face-to-face teaching for non-participants were polarized. Three-quarters (75%) supported incentives, though there were some concerns about effectiveness and unintended consequences. Participants emphasized the importance of communication about the potential benefits of testing. Preserving the voluntariness of participation in student asymptomatic testing programmes is likely to be the most ethically sound policy unless circumstances change.

In defence of our model for just healthcare systems: why an explicit philosophy is needed in addition to the law, and how Scanlon helps derive just policies.

In a recent response to our paper on developing a philosophical framework to guide the design and delivery of a just health service, Sarela raises several objections. We feel that although Sarela makes points which are worthy of discussion, his critique does not undermine either the need for, or the worth of, our proposed model. First, the law does not negate the need for ethics in determining just healthcare policy. Reliance on legal processes can drive inappropriate focus on ensuring policies avoid judicial review, as opposed to ensuring they are truly just; the law affords protection against unjust policies but does not put a commitment to avoiding them at the heart of policy-making. We defend the need for Scanlonian supplementation by emphasising the practical value of adding a step based on reasonable rejection, particularly in ensuring that the views of vulnerable stakeholders are robustly considered. We discuss the similarities and differences between the work of Daniels and Sen in considering the relationship between health and opportunity, concluding that Sen's capability approach is both valuable and compatible with our proposed model. Finally, the practical use of our model requires consideration of what constitutes a reasonable person. Our model is explicitly intended to help develop a healthcare system which is just to all its users. With this in mind, we suggest that those involved in decision-making should meet Scanlon's definition of reasonable: they should be motivated to justify their actions to, and seek agreement with, others.

Diagnostic uncertainty in primary care: what is known about its communication, and what are the associated ethical issues?

BACKGROUND: Diagnostic uncertainty (DU) in primary care is ubiquitous, yet no review has specifically examined its communication, or the associated ethical issues. OBJECTIVES: To identify what is known about the communication of DU in primary care and the associated ethical issues. METHODS: Systematic review, critical interpretive synthesis and ethical analysis of primary research published worldwide. Medline, Embase, Web of Science and SCOPUS were searched for papers from 1988 to 2020 relating to primary care AND diagnostic uncertainty AND [ethics OR behaviours OR communication]. Critical interpretive synthesis and ethical analysis were applied to data extracted. RESULTS: Sixteen papers met inclusion criteria. Although DU is inherent in primary care, its communication is often limited. Evidence on the effects of communicating DU to patients is mixed; research on patient perspectives of DU is lacking. The empirical literature is significantly limited by inconsistencies in how DU is defined and measured. No primary ethical analysis was identified; secondary analysis of the included papers identified ethical issues relating to maintaining patient autonomy in the face of clinical uncertainty, a gap in considering the direct effects of (not) communicating DU on patients, and considerations regarding over-investigation and justice. CONCLUSIONS: This review highlights significant gaps in the literature: there is a need for explicit ethical and patient-centred empirical analyses on the effects of communicating DU, and research directly examining patient preferences for this communication. Consensus on how DU should be defined, and greater research into tools for its measurement, would help to strengthen the empirical evidence base.

Integrating philosophy, policy and practice to create a just and fair health service.

To practise 'fairly and justly' a clinician must balance the needs of both the many and the few: the individual patient in front of them, and the many unseen patients in the waiting room, and in the county. They must consider the immediate clinical needs of those in the present, and how their actions will impact on future patients. The good medical practice guidance 'Make the care of your patient your first concern' provides no guidance on how doctors should act when they care for multiple patients with conflicting needs. Moreover, conflicting needs extend far past simply those between different patients. At an organisational level, financial obligations must be balanced with clinical ones; the system must support those who work within it in a variety of roles; and, finally, in order for a healthcare service to be sustainable, the demands of current and future generations must be balanced.The central problem, we propose, is that there is no shared philosophical framework on which the provision of care or the development of health policy is based, nor is there a practical, fair and transparent process to ensure that the service is equipped to deal justly with new challenges as they emerge. Many philosophers have grappled with constructing a set of principles which would lead to a 'good' society which is just to different users; prominent among them is Rawls.Four important principles can be derived using a Rawlsian approach: equity of access, distributive justice, sustainability and openness. However, Rawls' approach is sometimes considered too abstract to be applied readily to policymaking; it does not provide clear guidance for how individuals working within existing institutions can enact the principles of justice. We therefore combine the principles derived from Rawls with Scanlonian contractualism: by demanding that decisions are made in a way which cannot be 'reasonably rejected' by different stakeholders (including 'trustees' for those who cannot represent themselves), we ensure that conflicting needs are considered robustly.We demonstrate how embedding this framework would ensure just policies and fair practice. We illustrate this by using examples of how it would help prevent injustice among different socioeconomic groups, prevent intergenerational injustice and prevent injustice in a crisis, for example, as we respond to new challenges such as COVID-19.Attempts to help individual doctors practise fairly and justly throughout their professional lives are best focused at an institutional or systemic level. We propose a practical framework: combining Scanlonian contractualism with a Rawlsian approach. Adopting this framework would equip the workforce and population to contribute to fair policymaking, and would ultimately result in a healthcare system whose practice and policies-at their core-were just.

'Healthcare Heroes': problems with media focus on heroism from healthcare workers during the COVID-19 pandemic.

During the COVID-19 pandemic, the media have repeatedly praised healthcare workers for their 'heroic' work. Although this gratitude is undoubtedly appreciated by many, we must be cautious about overuse of the term 'hero' in such discussions. The challenges currently faced by healthcare workers are substantially greater than those encountered in their normal work, and it is understandable that the language of heroism has been evoked to praise them for their actions. Yet such language can have potentially negative consequences. Here, I examine what heroism is and why it is being applied to the healthcare workers currently, before outlining some of the problems associated with the heroism narrative currently being employed by the media. Healthcare workers have a clear and limited duty to treat during the COVID-19 pandemic, which can be grounded in a broad social contract and is strongly associated with certain reciprocal duties that society has towards healthcare workers. I argue that the heroism narrative can be damaging, as it stifles meaningful discussion about what the limits of this duty to treat are. It fails to acknowledge the importance of reciprocity, and through its implication that all healthcare workers have to be heroic, it can have negative psychological effects on workers themselves. I conclude that rather than invoking the language of heroism to praise healthcare workers, we should examine, as a society, what duties healthcare workers have to work in this pandemic, and how we can support them in fulfilling these.

Conflicting demands on a modern healthcare service: Can Rawlsian justice provide a guiding philosophy for the NHS and other socialized health services?

We explore whether a Rawlsian approach might provide a guiding philosophy for the development of a healthcare system, in particular with regard to resolving tensions between different groups within it. We argue that an approach developed from some of Rawls' principles - using his 'veil of ignorance' and both the 'difference' and 'just savings' principles which it generates - provides a compelling basis for policy making around certain areas of conflict. We ask what policies might be made if those making them did not know if one was patient, doctor, nurse or manager - in this generation or the next. We first offer a brief summary of Rawls' approach and how we intend to extrapolate from it. We examine how this adapted Rawlsian framework could be applied to specific examples of conflict within healthcare; we demonstrate how this framework can be used to develop a healthcare service which is both sustainable (in its training and treatment of staff, and in encouraging research and innovation) and open (to protect the powers and opportunities of those using the health service). We conclude that while Rawls' approach has previously been rejected as a means to address specific healthcare decisions, an adapted veil of ignorance can be a useful tool for the consideration of how a just health service should be constructed and sustained. Turning the theoretical into the practical (and combining Rawls' thought experiment with Scanlonian contractarianism), managers, doctors, patients, carers and nurses could come together and debate conflicting issues behind a hypothetical veil.

Should non-disclosures be considered as morally equivalent to lies within the doctor-patient relationship?

In modern practice, doctors who outright lie to their patients are often condemned, yet those who employ non-lying deceptions tend to be judged less critically. Some areas of non-disclosure have recently been challenged: not telling patients about resuscitation decisions; inadequately informing patients about risks of alternative procedures and withholding information about medical errors. Despite this, there remain many areas of clinical practice where non-disclosures of information are accepted, where lies about such information would not be. Using illustrative hypothetical situations, all based on common clinical practice, we explore the extent to which we should consider other deceptive practices in medicine to be morally equivalent to lying. We suggest that there is no significant moral difference between lying to a patient and intentionally withholding relevant information: non-disclosures could be subjected to Bok's 'Test of Publicity' to assess permissibility in the same way that lies are. The moral equivalence of lying and relevant non-disclosure is particularly compelling when the agent's motivations, and the consequences of the actions (from the patient's perspectives), are the same. We conclude that it is arbitrary to claim that there is anything inherently worse about lying to a patient to mislead them than intentionally deceiving them using other methods, such as euphemism or non-disclosure. We should question our intuition that non-lying deceptive practices in clinical practice are more permissible and should thus subject non-disclosures to the same scrutiny we afford to lies.