national decision model case study

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January 2021

• Canterbury Christ Church University (United Kingdom)

This researched explored the under-researched area of how the National Decision Model (NDM) is utilised, focusing on how professionals (n=15) from one Police Service in England and Wales applied the model while responding to incidents and during criminal investigations. The NDM was introduced in 2012 for police officers to apply to all decisions, regardless of location, rank, or situation. While the ethical principles of the NDM have been explored in research (Adams, 2014; Lax, 2014), its practical application for decisions has not been evaluated. This research provides an exploratory study intended to fill this gap in knowledge. Based on a review of literature, four research questions were identified: (1) What are practitioner perceptions of the NDM? (2) Are practitioners using the NDM intuitively or consciously? (3) How does practitioner utilisation of the NDM vary between different levels of the Professionalising Investigations Programme (PIP)? (4) How does practitioner utilisation of the NDM vary between investigations and response? Naturalistic Decision-Making was used as a theoretical framework, exploring the use of the Recognition Primed Decision Model (RPDM) in police decisionmaking. Qualitative data was gathered through semi-structured interviews and thematically analysed using the software platform, NVivo. The findings identified three themes: Intuitive Thinking versus Conscious Thinking, An Effective Model, and Investigation versus Response. This research concluded with recommendations for the College of Policing, the participating Police Service, and further research, in the hopes of creating a foundation for Evidence-Based Practice. This research was limited by its small sample size and the effects of COVID-19 restrictions impeding access to participants. There was difficulty in obtaining an equal number of participants from each PIP level due to fewer more experienced officers and due to officers being redeployed in different departments due to COVID-19.

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Decision-Making for UK Police on the Transportation of Casualties with Life-Threatening Injuries

• December 2020
• Journal of High Threat & Austere Medicine 2(1)
• CC BY-NC 4.0
• This person is not on ResearchGate, or hasn't claimed this research yet.

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Introduction, discussion: autonomy, professionalism, and phronetic policing.

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Professional policing and the role of autonomy and discretion in decision-making: A qualitative study from a virtue ethical perspective

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Andrew Maile, Sarah Ritzenthaler, Aidan Thompson, Kristján Kristjánsson, Professional policing and the role of autonomy and discretion in decision-making: A qualitative study from a virtue ethical perspective, Policing: A Journal of Policy and Practice , Volume 17, 2023, paac086, https://doi.org/10.1093/police/paac086

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Within an overarching identified construct of ‘autonomy and discretion’, this paper uses four themes to discuss how 30 interviewed UK police officers respond to challenging, ethically charged situations and what frameworks guide and structure their decision-making. These themes, elicited through qualitative thematic analysis, are personal judgement, doing the right thing, effective and adaptive communication, and emotional regulation. The relevance of these themes is discussed in the context of police professionalization and the Code of Ethics in England and Wales. The findings illustrate that the professional autonomy of police officers, when grounded in virtue ethics rather than more formulaic deontology, supports morally good policing and safeguards police legitimacy.

Considering the recent challenges that police forces have been facing to their legitimacy and socio-moral standing, the overall aim of the qualitative study reported in this paper was to gauge the extent to which professional character enables police officers to carry out their job effectively and with a sense of purpose. The qualitative study set out to explore what features predominated in the decision-making processes of 30 UK 1 police officers. A qualitative analysis of extended interviews with these police officers was conducted as part of a larger study of character virtues in UK policing that took place in 2021, with the aim of better understanding the moral practice of policing ( Kristjánsson et al ., 2021 ). To place this study in a theoretical context, something must be said first about the perennial legitimacy concern, hanging historically like the Sword of Damocles over the practice of policing.

Policing, as a public-facing occupation, has long been held to require public consent for the execution of its powers and responsibility: something which Bottoms and Tankebe (2012) refer to as ‘audience-legitimacy’, as understood within the normative model of procedural justice defined by Tyler (2006) . The role of ‘self-legitimacy’, whereby police officers seek to understand the moral validity of their power, and deploy this power in a way that is morally right, has also been identified as fundamental to the establishment and maintenance of police legitimacy ( Bottoms and Tankebe, 2013 ; Tankebe, 2019 ). In this view, both individuals’ ‘personal morality’, namely the general set of beliefs about how one should act, and their perceptions of police ‘legitimacy’, understood as the authority of police decision-making, need to be satisfied for procedural justice and police legitimacy to be secured. As Tyler concludes, ‘people comply with the law not so much because they fear punishment as because they feel that legal authorities are legitimate and that their actions are generally fair’ (1990, cited in Bottoms and Tankebe, 2012 :120).

As such, it can thus be argued that policing requires the trust and confidence of the public, a case which has again been made in a recent independent review of the Metropolitan Police Service ( Independent Office for Police Conduct, 2022 ). One way in which public trust and confidence can be gained (or maintained) by the police is through the execution of their roles in a moral and professional manner, displaying a moral alignment with the views and values of the general public ( Manning, 2019 ). Yet the evidence of unethical practice and professional scandals appear far too frequently in the media, inviting members of the public to scrutinize negatively, and continue to doubt, the legitimacy of the police.

One possible response to such morally questionable and unprofessional behaviour is to implement stricter rules and sanctions. However, if policing in England and Wales is to live up to the expectations placed upon it by the recent professionalization agenda, alternatives to increased formal limitations on how police officers can go about their work ought to be considered. In this regard, Neyroud and Beckley (2001 :220) have proposed a much-needed ‘renewal of the contract between the police officer and the citizen’ in 21 st -century policing, which, in turn, requires ‘a new commitment to ethics at the core of policing’. This commitment to placing ethics at the core of policing manifests itself, at least in part, with the professionalization agenda of policing in England and Wales.

The current study forms part of a series of studies exploring the role of characterological and virtue ethical conditions in shaping good ethical decision-making and a sense of professional purpose in various UK professions ( Arthur and Earl, 2020 ). Previous studies have indicated that these characterological conditions are best exemplified through the development and exhibition of intellectual, moral, civic, and performance strengths of character (also known as virtues) that enable the professional to act wisely in a given situation by making good decisions for the right reasons and practise one’s profession in an ethically salient manner. A core finding in previous studies has been about the importance of developing the meta-virtue of phronesis (practical wisdom) in one’s pre- and in-service professional training. A more general concern motivating all these studies, including the current one, has been the recent turn in professional ethics, including police ethics ( Morrell and Bradford, 2019 ; Wood, 2020 ), away from a compliance-based, rule-following ethical outlook (deontology) towards an outlook that foregrounds individual and collective moral character (virtue ethics). We say more about those outlooks below.

The designation of the term ‘professional’ to policing practice is particularly contested, dating back to at least the middle of the 20th century ( Critchley, 1967 ; Mark, 1977 ). Spurred on by the report on the training and leadership of police officers by Neyroud (2011) , the professionalization agenda progressed with the establishment of the College of Policing in 2013—which serves as the professional body for policing in England and Wales—seeking inter alia to tackle corruption and address low levels of public trust and confidence in the police through the setting of standards for good professional practice ( Neyroud, 2011 ). Additional processes were implemented, including changes to the training and recruitment of police officers via the newly established Police Education Qualification Framework (PEQF), replacing vocational training programmes with undergraduate degrees and undergraduate and postgraduate degree apprenticeships ( Hunter and May, 2019 ; Williams et al. , 2019 ).

The professionalization of policing in England and Wales is a topic that has received much attention and debate, with some suggesting it should be considered ‘re-professionalization’, while others remain unconvinced of its attribution to the role of a police officer ( Holdaway, 2017 ; Neyroud, 2011 ; Williams et al. , 2019 ). Typically referring to the process by which an occupation gains recognition as a profession, ‘professionalization’ also refers to the subsequent improvement of service delivery—which, based on recent policing controversies, is something many would support ( Her Majesty’s Inspectorate of Constabulary, 2022 ; Independent Office for Police Conduct, 2022 ). From a sociological perspective, the term ‘profession’ is typically applied to a particular group of traditional occupations that are associated with a certain status and privilege. The term ‘professional’ can also define the aspects of an occupation that mark it as a moral practice , with the term ‘unprofessional’ signifying a failure to meet the moral standards of behaviour and conduct expected of an occupation ( Jubilee Centre, 2016 ).

In contrast to the term ‘professional’, policing has also been described as a ‘craft’ or ‘artisan’ role, distinguishing it from scientific and authoritative knowledge associated with other, often elitist, professions and reaffirming its ‘citizen in uniform’ conceptualization ( Neyroud, 2011 ). Rowe and colleagues (2016) unpack the ‘craft’ nature of policing, and suggest that while it is possible to identify ‘craft’ aspects of policing, this does not mean it cannot be considered a profession. Rather, they draw into focus the applied and practical aspects of policing that are typically beyond the scope of a degree programme ( Rowe et al ., 2016 : 284). As will be seen throughout the following, reference to policing as a profession does not preclude the ‘craft’ aspects of the role. Accordingly, the importance of peer learning, which may be considered a ‘craft’ aspect, appears in the empirical findings below.

The present research builds on the Jubilee Centre for Character and Virtues (2016) neo-Aristotelian conception of moral professional practice, in the virtue ethics tradition, seeing good professional decision-making as rooted in wise moral reasoning, where decisions are made for the right reasons, utilizing one’s own strengths of character, whilst seeking to benefit those around us. This differs from the other two main moral theories of deontology, emphasizing rules-based reasoning, and utilitarianism or consequentialism, emphasizing good-outcome-maximizing reasoning, as further explained below.

While debates about whether it is appropriate for policing to be regarded as a profession remain, for the purpose of this paper this designation of policing is accepted. This is supported both by the ongoing professionalization agenda, spearheaded by the College of Policing, and by how the following five generally accepted features of a profession are (at least in part) met by the police ( Carr, 1999 ):

First, an ethical dimension of the profession is captured by a formalized code of practice, which for policing occurred with the publication of the Code of Ethics 2 [hereafter: the Code ] by the College of Policing (2014) . 3

Second, the profession requires both theoretically and practically grounded expertise. It could be argued that the publication of the PEQF and the subsequent degree-level requirements for entrance into policing meet this criterion, outlining the required practical and theoretical learning for accredited universities to confer policing degrees. The PEQF also presents the opportunity for policing to regain professional authority with a better understanding of its role in society, and a chance to respond to societal demands of police officers in ways that are thoughtful, meaningful, and appropriate ( Wood, 2020 : 376). Additionally, the College of Policing is the formal body of policing expertise, offering guidance through its ‘Authorized Professional Practice’ (see https://www.college.police.uk/app ).

Third, the profession provides an important public service. This characterization is met in policing, which is viewed as both a ‘customer-based’ and ‘public’ service ( Neyroud, 2006 ).

Fourth, there are organizational regulations for the recruitment and discipline of police officers. This criterion is met in both the PEQF requirements for policing, and the Standards of Professional Behaviour for police officers, which includes guidance on dealing with misconduct and the Police Appeals Tribunal that are issued as part of the 1996 Police Act ( Home Office, 2014 ).

The fifth and final criterion is that professions require a high degree of judgement and autonomy in the execution of their roles. It is this criterion, in particular, that the findings from the in-depth qualitative work presented in this paper will be addressing.

The five professional criteria considered above indicate that while professionals require a foundation in theoretical and practical expertise, they must necessarily function as autonomous individuals who act upon their own decisions, informed by theory and experience. In order to fully understand the extent to which autonomy is conducive to the role in question, it is necessary to unpack the different approaches to professional policing ethics, that is, virtue ethics, deontology, and utilitarianism. The present research adopts a virtue ethical stance in seeing policing as a moral practice, requiring certain moral, civic, intellectual, and performative virtues of its practitioners. It views the Code through such a lens and explores what the Code promotes in support of a moral approach to policing.

To rehearse briefly the theories in question, virtue ethics is one of the three leading ethical theories competing for allegiance within both ethical theorizing in general and professional ethics in particular. Virtue ethics defines moral rightness according to the effect it has on the agent, in terms of the extent to which it supports the agent to be virtuous and lead a well-rounded flourishing life ( Aristotle, 1985 ). Consequentialism considers the moral rightness of an action in terms of the consequences it has for the maximization of overall human happiness ( Mill, 1863 ). In contrast, moral rightness from a deontological perspective is defined in terms of adherence to universal, rationally grounded principles, or the maxims (in the form of rules or codes) derived from them ( Kant, 1964 ). To give a simple example, virtue ethics would justify the value of procedural justice in terms of its manifestation of the generally acknowledged virtue of fairness and its intrinsic value for a well-rounded life. Consequentialism would justify procedural justice in terms of its extrinsic/instrumental long-term benefits for the whole of humankind; and deontology would consider justice a rational principle, manifested in written laws, the violation of which counts both as a breach of practical reason and of institutionally sanctioned rules.

Different features of police ethics are amenable to consequentialist as well as deontological interpretations; hence, the enduring appeal of these approaches within police ethics. For example, to the extent that policing involves enforcing particular laws in society—as well as upholding the ‘rule of law’ in an abstract sense—this requires the enactment of principles, which takes us back to the deontological territory. Yet concerns have been raised regarding an understanding of police ethics that equates it to the mere adherence to principles and rules. First, considering the complexity of judgements required of professionals, it is almost impossible to find general rules that are applicable in all situations. Second, when professional conduct is defined in terms of rules and protocols, this can result in a mindset that is unreflective or conformist, discouraging the kind of autonomy and initiative expected from professionals. Further, this may even serve as a disincentive for moral reasoning, as professionals discern the inevitable ‘shades of grey’ in complex situations. Third, a carrot-and-stick method of increasing rules and sanctions within practices has proven to be ineffective in professional work contexts ( Schwartz and Sharpe, 2010 ; Jubilee Centre, 2016; Wood, 2020 ).

This explains why, in recent theorizing about those features within police ethics, the pendulum has been swinging away from deontology and towards virtue ethics ( Manning, 2019 ; Wood, 2020 ). Moreover, virtue ethics is more sensitive to the motivational make-up of the ethical agent/professional. Thus, according to virtue ethics, someone may be judged unfit for professional practice if their possession of theoretical and practical expertise is not complemented with appropriate character traits, attitudes, and motivations ( Carr, 2000 ).

Modern policing involves much more than law enforcement, application of police-force policies or apprehending criminals for it to be considered good policing ( Wood, 2020 : 4). Indeed, a considerable portion of the work requires ‘proactive policing’, which involves mediation and quelling of conflicts before they escalate ( Wood, 2020 : 39). Oftentimes, this does not qualify as a reaction to any legal violations, as there has been no breach of the law. Rather, it requires creating in individuals conditions of character that are conducive to maintaining the ‘Queen’s Peace’. In that sense, some aspects of police work, at least, already have a strong virtue ethical dimension built into them.

Stemming from this virtue ethical tradition is the neo-Aristotelian conception of phronesis , the intellectual meta-virtue and meta-cognitive capacity for contextual, holistic, integrative adjudication and practical reflection about moral issues, which leads the professional (in this case, police officer) towards moral action ( Kristjánsson, 2015 ). Importantly, phronesis enables the individual to engage in reflection and adjudication about moral issues in a way that is non-codifiable: it cannot be prescribed by rules, nor is it amenable to an algorithmic style of decision-making. Rather, it requires discernment, discretion, and deliberation, and relies upon expert knowledge and experience. Wood (2020 : 5) describes ‘the ability of an officer to make sense of competing demands within different contexts, as opposed to following ethical rules of one kind or another’, and it is this ‘ability’, which in the virtue ethical literature is typically referred to as (professional) phronesis .

Virtue ethics and the police Code of Ethics

Returning to the issue of different understandings of procedural justice, Hough (2021) warns that—for some police officers—the principles of procedural justice may simply be viewed as a method, or set of tactics, for ensuring that the public complies with the law. In this way, such principles may merely be used ‘as a series of behavioural tricks—or social skills—which need to be acquired in order to deliver effective policing’ ( Hough, 2021 : 87). It is precisely here where a virtue ethical approach, serving as a foundation of the moral actions of a police officer, would be distinct from one informed by deontology or consequentialism. The recent ethical re-focus of policing in England and Wales promoted by Neyroud and Beckley (2001) , and evidenced by changes such as the publication of the Code, ought to be commended for the emphasis it places on ethics sitting at the centre of police decisions and actions.

Developed by the College of Policing, the Code was published in 2014 and is one of the important outcomes of the professionalization agenda, and the ethical focus of policing. Codes of this kind have usually been inspired historically by the ethical theory of deontology: adherence to discrete rules and principles. This Code , however, is unique when compared to other professional codes of ethics (with the exception of the civil service) in apparently being informed by insights from virtue ethics. The Code clearly indicates that police officers’ ethical behaviour ought to stem from personal values, reflected in the Code , that guide their conduct. The nine values in the Code— referred to as ‘principles’ (indicating a historical deontological provenance)—are ‘selflessness’, ‘honesty’, ‘openness’, ‘respect’, ‘accountability’, ‘fairness’, ‘objectivity’, ‘integrity’, and ‘leadership’. With the exception of ‘accountability’, these values are, from a virtue ethical perspective, considered to be intellectual and moral virtues : namely strengths of character, rather than simply principles or values. The Code is supplemented by the National Decision Model (NDM), a five-step flexible guide for navigating ethical decision-making in policing.

It is possible to be either sympathetic or unsympathetic when interpreting the Code from a virtue ethical perspective. Two of three recent works promoting a virtue ethical take on UK police ethics take the more critical, unsympathetic view ( Manning, 2019 ; Wood, 2020 ). Morrell and Bradford (2019) do not discuss the Code , however. Wood (2020) worries that the Code reduces ethical decision-making to models and mnemonics, giving officers the impression that ethical decision-making can be learned simply by following the given principles. There is, thus, ‘a danger that it fosters unthinking compliance rather than intelligent, ethical reasoning’ (2020: 25), revealing concern that the Code reflects more of a deontological alignment, and suggesting that the promotion of professional autonomy needs to be made more explicit. Manning’s verdicts on the Code are even harsher. He worries, like Wood, that the Code seems to ‘imply that moral conduct will naturally follow’ from its publication (2019: 16); and he rues the absence of any explicit ethical theoretical grounding (2019: 118). In this respect, Manning (in particular, and corroborated by Williams, 2021 and Wood, 2020 ) indicates dissatisfaction with how the Code was implemented—an important consideration for future iterations of the Code, its implementation and subsequent reception among the police. He further argues ‘that the publication of the [Code] falls short of providing an exemplary framework for police officers with appropriate guidance and training for them’ (2019: 17).

Manning produces evidence from his own interviews with police officers and other sources indicating that the Code has had scarcely any effect on actual decision-making within the police; that it is badly taught, if at all, to budding police constables; and that they barely understand it or just refer to it flippantly (2019: 208–209); a finding that is largely mirrored by Williams (2021) . Yet on a more positive note, Hough writes: ‘The College of Policing has struck a sensible balance between issues of ethics and those of morality in its code’ (2021: 89)—where the word ‘ethics’ clearly refers to a deontological understanding but ‘morality’ to a characterological or virtue ethical one. Hough does point out, however, that more guidance could be provided in terms of explicating what is expected in terms of adherence to the principles/virtues. His critique also seems to suggest that the ethical theory underpinning the principles ought to be made more explicit, which again finds corroboration in the recent work by Williams (2021) .

It is no novelty to see virtue ethically minded theorists speak of ethical codes with opprobrium. Such codes, after all, tend to have a deontological provenance; and even when understood as a broad set of simple techniques used to solve challenging problems, they rarely seem to have much direct practical value in terms of guiding conduct. Constructing an ethical code is often little more than a tick-box exercise to satisfy quasi-legal requirements. Importantly, though the police Code is not defined in terms of rules and protocols, and thus it is not at risk of promoting unreflective or conformist mindsets, nor does it discourage professional autonomy and independent moral reasoning. When viewed through the lens of virtue ethics, the Code sets out the moral mission of policing, and while failing as a vehicle of codifiable decision-making (as all ethical codes will do), the message conveyed in it appears conducive, rather than inimical, to the cultivation of reflective police professionals.

Hough (2021) raises two important questions in this regard: (i) whether police officers should be promoted and recruited based on their character or on their competencies, and (ii) whether the Code simply requires police officers to perform the virtues (or principles) listed, such as respect and fairness, or whether they be required to internalize them. In Hough’s view, ethical deontologically inspired behaviour and moral/virtuous action may be distinct from one another. What we advocate for in this paper, however, is that this distinction is not a clear-cut one, and that ethical behaviour (i.e. doing the right/prescribed thing) can ideally be morally informed (i.e. doing it for the right/virtuous reason). While not explicitly indicating a virtue ethical foundation, the classic virtue ethical formulation of ‘doing the right thing for the right reason’ does feature in the Code , as well as references to making ‘wise decisions’, and ensuring that moral virtues such as empathy and compassion guide police officers in their interactions with the public ( College of Policing, 2014 ). The ‘wisdom’ employed in decision-making comes, according to a virtue ethical outlook, through the cultivation of phronesis (practical wisdom)—excellence in moral decision-making—which the present study explores below (cf. Darnell et al. , 2019 ). What will be revealed in the discussion about the emergent themes is that these two aspects (i.e. the ethical and the moral) need not be viewed separately, but rather come together complementarily under the overarching theme of ‘autonomy and discretion’.

The present qualitative study stems from a larger mixed-method project, Virtues in Policing ( Kristjánsson et al ., 2021 ). Semi-structured interviews were conducted with 30 UK police officers with varied operational and managerial responsibilities (two of whom had retired) between 19 February 2021 and 29 April 2021.

Recruitment of participants was facilitated through the Ethics Leads at each of the 43 police forces in all four regions of the UK, via the distribution of an optional survey. At the end of the survey, respondents were asked if they would be interested in participating in a follow-up interview. Three hundred and thirty-five police officers completed the survey, of which 137 indicated a willingness to be interviewed, from which the final cohort of 30 was selected based on purposive sampling. Interviews lasted approximately 1 hour, were conducted online via videoconferencing, and then were recorded and transcribed. Biographic data of interview participants and aspects related to their work as police officers is captured in Table 1 .

Biographic and work-related data of interview participants

a The urban/rural/mixed location identifier applies to the location in which the police officer was working at the time of their participation. It is important to bear in mind that many of the officers included in the study had previously worked in other locations, including more rural locations as well as more urban locations, such as the Metropolitan Police Service.

b Years of Service.

Interview questions related to the following overall research themes:

1) What the officers’ journeys were to becoming police officers, their inspiration to pursue the profession, and the kind of qualities they aspire(d) to show in their work (both at the beginning of their career and at present).

2) What they consider to be their most important character strengths and qualities, and how these qualities influence their work.

3) How useful they find the Code and to what extent it informs their actions.

4) Any challenges or obstacles they have had (or currently experience) in being able to display the qualities and character strengths they consider to be important in the role.

5) If they had any recommendations to make regarding the education and preparation of pre-service police officers, particularly in relation to the professionalization of policing.

Data were analysed using inductive thematic analysis, which enabled the identification and analysis of the key emergent themes ( Braun and Clarke, 2006 ). The analysis was undertaken by two researchers with the use of Nvivo, and began with a purely inductive process prior to engaging with the literature related to the identified themes. The researchers conducting the recursive analysis met frequently to discuss the prominent identified themes, before agreeing on a set of ‘priority’ themes, including main and subcategories to look out for, which fitted coherently with the overarching construct of autonomy and discretion. This was undertaken following a similar process to that proposed by Braun and Clarke (2006) . All findings discussed below that might link to the identities of individuals or forces have been anonymized.

The study was given full ethical approval by the University of Birmingham Ethics Committee.

Limitations

The sampling of participants was reliant on the use of gatekeepers at each force and the voluntary nature of participants who indicated their willingness to be interviewed. Self-selection bias cannot be avoided in a study like this; however, the researchers note that the explicit purpose of the research relating to policing as a moral practice, may have meant that police officers who identify positively with the virtuous aspect of policing were more likely to register interest in being interviewed. Additionally, due to the self-report nature of interviewing, it is possible that responses may be subject to the problems of (i) social-desirability bias, whereby participants respond so as to be viewed favourably; (ii) self-confirmation bias, whereby participants uphold their prior beliefs and discard anything that contradicts those beliefs; and (iii) self-deception bias, whereby self-representations do not cohere with reality.

The overarching theme that emerged from the analysed data related to the value, need, and purpose of police autonomy and discretion. Within this overarching theme, four subthemes emerged: personal judgement, doing the right thing, emotional regulation, and effective and adaptive communication. There was overlap between the themes, and an indication that themes reinforce one another; however, for the sake of clarity, quotes that reveal this overlap have not been included.

Personal judgement

All professions require an element of personal judgement, and findings in our interviews revealed that the capacity of police officers to exercise personal judgement—based on their expert knowledge, evaluation of laws and policies, and with sensitivity to the specific context—was of crucial importance to them, in order to do their job well. Many emphasized that the ability to adjudicate between competing priorities was central to the execution of their duty, and that in some circumstances, going against the accepted norm, or even employing an unconventional approach, had been key to diffusing a challenging situation. This indicates a virtue ethical ‘ phronetic ’ orientation over a deontological one.

As one interviewee described the role:

… the fact is, as a police officer you are your own boss. Yes, there’s a hierarchy of a rank... [but] when you step outside that station and step into the community, it’s up to you whether you stop that car, whether you stop that person, how you deal with that person. (A25)

And another:

…the overriding [quality] which I think a police officer needs is judgement in knowing what is appropriate… about when and how the law should be applied and it’s a very fine line. (S3) … before the Code of Ethics …there was very rarely a hard and fast rule about what you should do here. I suppose a lot of it was using good judgement, being prudent when it called for it, being brave when it called for it and just having that sense of judgement about what was appropriate in a given set of circumstances. (S3)

The emphasis on being personally responsible and accountable for their own decisions was evident across the interview cohort. To illustrate: ‘could I stand in front of the person that’s going to be most adversely affected by it and explain why I’ve done it?’ (A9). Thus, it is not a matter of blindly making personal judgements, but doing so in a way that incorporates their vast experience, built upon self-reflection and imitation of role models. As one interviewee commented, ‘…can you justify your actions? The answer must always be ‘yes’’ (A1).

Through the experience of working with and for different individuals, police officers described how they were able to develop their own constructs of appropriate behaviour, both towards the public and in relation to other colleagues; being creative, and learning from others:

We had a big stand up at a nightclub one night, and the lad next to me got out of his pocket a white tatty bag full of mint imperials, thrust it forward to this lad that was going to kick off and said ‘you want a mint?’ … and the other one said ‘yeah, go on then’ and that was it, situation diffused, everybody happy… (A1)

For others, this translated to a nuanced understanding of more formal structures of decision-making, such as the Code :

…there’s nothing written in the Code of Ethics that doesn’t pass through my social filter already. … And it’s not there to measure how well we’ve done, it’s there to measure somebody who’s done poorly. (A27)

More experienced police officers referred not to the Code as their primary reference for decision-making, but rather their own moral code, shaped by their experiences in the job and the examples set by role models: ‘If you don’t believe in those things, you shouldn’t be a copper’ (A3). Once again, references to a personal moral compass and the salience of moral role models are standard virtue ethical indications.

Doing the right thing

Participants were consistent in their presentation of exercising personal judgement in the pursuit of ‘doing the right thing’ and with the goal of ‘making the right decision’. Most often, the desire to do the right thing stemmed from a deeper sense of professional purpose and meaning within the role:

I come back to who am I doing this job for? Am I doing this job for senior managers or the government? No, I’m doing this job for the victims. So, what is the right outcome for the victims? (A3)

The right outcome, however, is not something that participants found easy to determine:

… I think sometimes that’s really, really difficult to articulate what that is… What is the right thing to do there? (A9) Doing the right thing isn’t always easy. In fact, most of the time doing the right thing is hard. That’s where the bravery comes in… (A7)

Participants frequent reference to ensuring they do the right thing reflects the complexity of policing; when knowing the right thing to do is neither easy nor obvious, but is always underpinned by good and well-meaning intentions. The challenges surrounding being able to make ‘the right decision’ are linked to the recognition of context sensitivity, as well as balancing competing demands and available options based on knowledge and experience, and how these can be applied in different situations. This requires ‘problem solving and analytical decision making’ (A17), even with less complicated cases:

We deal with a lot of grey areas, and sometimes arrest and court isn’t suitable for the officer, the victim or the offender…It’s great being able to kind of deviate and think outside the box, given most officers will be able to do that and they really excel in doing it, choosing the right thing for the right people. Having the ability to do that is massive, absolutely massive for victims and offenders and the whole system… (A26)

Many participants also mentioned the role of reflection, both pro-active and retro-active, in their efforts to ensure that they were doing the right thing and ensuring that they can learn from lessons and mistakes of the past:

...You think afterwards ‘How did that go?’... ‘How did I come across? How did the profession come across? And how could we [have] done it better, explained it better, or just been better for that person in general?’ (A13)

The questions raised in the quote above indicate what informs much of the participants’ thinking around mistakes, which typically reveal concerns that the outcome of the interaction might not reflect the good intentions of the officer, or the general desire of providing a service that aims to help and support vulnerable individuals and communities. To this extent, participants spoke about the value of having colleagues with whom they could discuss ideas and invite friendly challenge to their ideas and solutions:

You’re trying to weigh all this up, it can be quite a difficult decision, and again having the conversation helps, bouncing those ideas off, those ethical decisions off. I don’t think you can undervalue the impact of or the benefit of seeking wider views around stuff and getting a different perspective on it. (A2)

Indeed, when collegial support structures and networks are not in place, this can serve as an obstacle to deliberating between different options and finding the right outcome: ‘I think the only real things that stop you are the lack of support from higher up...’ (A26)

Personal reflections from making and learning from mistakes were described as profound, and often impacted the interviewees throughout their careers:

…you just need to put your hand up and say, “I fucked up.” This is why, I acted with good intentions, but I did the wrong thing. And if you do that, then nobody can ever accuse you of being anything less than upright and honest. So they were such powerful lessons to learn. (A7)

Participants also emphasized the need to provide junior officers with ‘an environment where they can be honest enough to learn for the benefit of the organisation’ (A9) and mentors with whom ‘…you always felt secure to make mistakes, and to constantly seek advice and affirmation’ (A24). This ability to reflect on and learn from mistakes was mentioned repeatedly, and when mistakes are made there is a need to be vulnerable—with oneself, to colleagues, and with citizens directly implicated in a case. As one participant reflected, ‘I had to sort of open myself up and show, unfortunately, I had to show the complainant that there is a human, a fallible human being…’ (A7).

Although none of the interviewees mentioned the word phronesis , they described their decision-making in terms that are more in line with virtue ethical phronetic reasoning ( Darnell et al ., 2019 ), rather than a deontological or consequentialist one.

Effective and adaptive communication

Police officers must navigate vast and varied roles, meeting the disparate needs of those who call on them for assistance, and balancing the divergent interactions and encounters they have with members of the public. In order to do this, many participants identified the absolute centrality of effective communication. Indeed, for most of the police officers interviewed, the ability to talk to a wide range of people with relative ease was held to be among the most vital capabilities for a police officer to have:

It is the most important skill. Policing is about people isn’t it? … At the end of the day, you can have the best evidence in the world but unless you can sit across the table from someone and talk to them, you’ve got no place in the police service. (S6) …probably the biggest thing for an officer to have is the ability to communicate. I have talked my way out of more violent situations than I can count and purely by the way that I’ve interacted with people. That’s probably…the biggest and best tool that we have… (A17)

It is through these conversations that police officers are able to understand the public, the particular needs and concerns of the victim or (alleged) perpetrator, and adapt their responses as appropriate to achieve effective resolutions. As one interviewee reflected, ‘I had to rein in, I suppose, a little bit of natural exuberance… I had to think quite carefully about what I said to people and how it came across’ (S9). In this regard, police officers indicated their awareness of adapting their communication styles—both elevating and deescalating—in order to achieve their desired outcomes:

It’s about being able to talk to people, in a way that they understand. Be respectful and courteous when someone’s in your face trying to spit at you … (S9) There may be times you need to be very compassionate and caring, then other times you need to be very forthright. It’s that ability to be fluid in that approach and to be able to read people. (S19)

Moreover, interviewees also spoke of the importance of communicating well with colleagues and superiors in order to achieve good outcomes in their work. Where communication is poor, the job becomes more difficult:

So, being able to communicate with people… we police by consent, we don’t enforce the law… So, it is a lot about communication, calming people down by speaking to them and I think that’s probably the most important. (A13) So you might have someone that comes in and delivers a fabulous detection rate, but breaks every other copper, or every investigator that they’ve got. And people don’t want to work with them generally… (A8)

The weight given to the ability to communicate also brought out an interesting trend in the kind of virtues prioritized by police officers. Empathy and compassion (and other similarly emotion-related virtues) were often listed, and were regarded as important components of effective listening. As two interviewees remarked:

… if you can empathise with someone, you understand a bit of where they’re coming from; every officer has had their own struggles at some point. You have that little bit of empathy with people, you’re able to put yourself in their shoes and communicate with them well. (A17) There’s a time and a place for frivolity, there’s a time and a place for humour… there’s a time and a place for no reaction whatsoever, sympathy, empathy, it’s knowing when to give the right feeling at the right time. (A1)

Several interviewees felt that focusing on compassion and empathy is a new concept in policing, which may well have been born of necessity due to the changing role that the police hold in society. Rather than ‘locking up the bad guys, now it’s much more around identifying vulnerability, protecting the innocent, protecting people from harm’ (A2).

This theme of compassion and empathy (which speaks directly to virtue ethical insights) was reflected also in the relationship between leaders and staff within the ranks of the police, with many in positions of authority mentioning being aware of the struggles and vulnerabilities of staff members as well members of the public:

I want my team just to get on and do a really, really good job around the objectives that we’re given to do. But actually, to enable them to do that, for them to achieve that, I need to be more compassionate towards them. More understanding of them and their needs, in order to unlock them to achieve their potential. (A9)

Emotional regulation

In line with adapting modes of communication effectively, there was a clear indication of the need for participants to manage or regulate their emotions, so as to better anticipate how to ensure their actions, behaviours, and communication could aid in better decision-making. ‘You need be assertive, come across that you are in control, and be able to calm situations down’ (A13). Importantly, this illustrative quote may also reveal a slight nuance in how one’s ability to ‘control’ one’s emotions may also be used to dominate interactions.

One participant expressed the importance of ‘Strength of character, just to keep it together at the time, fall [apart] later, but don’t let the public know that you’re panicking or you’re sick by what’s going on, if anything, seem [as] laid back as possible…’ (A1). This ability to self-regulate one’s actions and underpinning emotions was seen as fundamental to modern policing, especially in contexts where ‘…that emotion, that adrenaline that’s, you know, pumping through you, and you’ve got your heart in your mouth…’ (S15).

Much of this ability to adapt and regulate one’s emotions was gained through direct observation of more skilled and senior colleagues. When reflecting on the role of the tutor constable and other role models, one participant expressed:

…you would see with some people, if they went into a situation very calmly, then someone’s always going to come down to your level. Whereas if you start off quite high, then they can’t go down further. So, I think that’s something that stuck with me, with colleagues that were really calm. I’m like, this seems to be a better way, explaining things to people before you even get hands on with them…it’s about your behaviour leads to your reaction, then that leads to their behaviour, and their reaction leads to your behaviour . (A13)

In this way, the ability to know how to manage one’s emotions and reactions can influence the nature of the interaction as well as the outcome and consequences of the experience. The importance of emotional regulation is further illustrated:

I really think maybe the emphasis should be on being really calm, keeping a level-headed approach to not letting whatever that person is saying affect you. (A13) … there’s even times that you can end up having a laugh and suspects you’ve arrested that you’ve maybe previously even been fighting with, then shaking your hand and saying, “You’re an alright copper.” It’s the way that you deal with them … (A17)

Indeed, there was also an indication of awareness by the participants that use of force could at times be used ethically, if the situation called for it, and that in return, police officers’ conduct—with the requisite ability to regulate their emotions—could influence the outcome of a situation and the extent to which they too would be recipients of force. This reveals the extremity of emotional regulation required by police officers, recognizing that at times it may be necessary to use force (deployed in an ethical way), as illustrated by the following quote:

I would always say honey always works better than vinegar and trying to get somebody on side, you’ve got to try that first, because if push comes to shove and you’re in a fight with them on a Friday night, if they knew that you’ve treated them with respect previously, they might not kick you in your head. They might kick you in your stomach, but they might avoid kicking you in your head . (A7)

Notably, emotional regulation is one of the components of the virtue ethical intellectual meta-virtue of phronesis ( Darnell et al. , 2019 ).

One of the defining criteria of a profession is professional autonomy, where its professionals are looked upon and expected to exercise professional judgement ( Anteby et al. , 2016 ). In highly bureaucratic institutions, expectations to conform and comply can prevent professionals from acting with judgement based on professional expertise and knowledge, and thus serve to threaten the professionalism of the role ( Walker, 2018 ). As the findings above illustrate, in policing, the fundamental necessity to be able to exercise autonomy when it comes to handling cases, adapting one’s style to ensure effective communication and outcomes, and using one’s personal judgement to ensure that the right decision is made, is of paramount importance to overall professional competence.

The four themes explicated above indicate that, although police officers may regularly be seen to fall short of the ideal moral character of a virtuous professional and expectations of the public (emphasized through often subjective media depictions focusing on their mistakes rather than their merits; MacVean and Spindler, 2015 : 110; Wood, 2020 : 1), autonomous decision-making is quintessential to the role. In the exercise of this autonomy, structures and frameworks provided to them—such as by the Code and the NDM—provide an important foundation and springboard from which ethical decisions regarding behaviour, communications, and differing levels of legal action can be discerned and dispensed, as deemed appropriate by the individual. However, these frameworks alone do not suffice for the exercise of autonomous decision-making. Rather, they are a springboard, and require officers to employ their own personal judgement—guided by their ability, foresight and expertise—to regulate their emotions, so as to ensure effective and adaptive communication. These are undertaken with the aim of making the ‘right judgements’ and in order to ‘do the right things, for the right reasons’ ( Neyroud and Beckley, 2001 : 27; cf. Kleinig, 1999 ) and ‘in the right way’ ( College of Policing, 2014 : 3).

With an explicit focus on displaying and enacting a wide array of virtues (which extend beyond the remit of the Code’s ‘principles’) throughout their work, participants in the present study clearly spoke of engaging with the public in a manner conducive to the context and associated professional requirements. Where possible, participants referred to engaging in professional conduct in ways that were representative of moral alignment with the public, and therefore, the corresponding justification of police legitimacy. While this theme of ‘moral alignment’ was not a prominent finding in Manning’s interview study ( 2019 ), the present research findings tally with the conceptualization proposed by Jackson and colleagues ( 2012 : 1051)—namely that the police act ‘according to a shared moral purpose with citizens’. While this may not seem explicit in the quotes included above, the emphasis on ‘knowing when to give the right feeling at the right time’ (A1) and ‘identifying vulnerability, protecting the innocent, protecting people from harm’ (A2), is indicative of a desire and appreciation of moral alignment. These findings partially reflect the considerations explicated in ‘self-legitimacy’, where links between normative orientations toward the public and ‘self-legitimacy’ are highlighted ( Tankebe, 2019 ). In this respect, police officers carefully reflect on how best to enforce the law while ensuring that their actions do not alienate the public, seeking to engage in ways that ‘establish attributions of legitimacy’, and which is linked to a range of positive attitudes and behavioural outcomes ( Bottoms and Tankebe, 2013 : 75; Tankebe, 2019 ). In this way, while police officers seek to legitimate policing by reflecting moral alignment with the public, it remains for the public (the audience) to accept this claim and confer the legitimacy to the police (the power holder, Bottoms and Tankebe, 2013 : 64).

Nevertheless, the challenges and obstacles identified by several participants highlighted the risks that the professionalization agenda of policing, insofar as it is deontologically motivated, poses to inhibit the exercise of autonomous decision-making. The perceived increase of ‘red tape’ serves (for some) as a barrier to exercising personal judgement, and ultimately to make the right decision. This implies a lack of trust in the police as professionals, despite a strong recognition of the need to be accountable and able to justify why certain decisions and judgements were made. Throughout the research, while some participants spoke of policing as ‘enforcing the rule of law’, all of them recognized that policing was neither instrumental nor narrowly defined in this way. Rather, it was grounded in a morally driven service aimed at helping and supporting the community by fighting crime, as well as fulfilling the role of a social service institution. Police officers’ reflections about ethical considerations and moral motivations in their work seem in this respect to contribute to the legitimation process, whereby the police officers self-proclaimed and authentically expressed ethicality in how they undertake their work are claims to self-legitimacy ( Tankebe, 2019 ). This aligns with findings suggesting that ethically motivated police officers, whose conduct is underpinned by impartial decision-making, treating the public with dignity, and boundary-awareness (bounded authority)—all practices which support the legitimation process—are essential to a healthy and well-functioning police service ( Trinkner et al. , 2018 ).

The four themes identified here underline the value of the Code , and that officers ensure their actions account for ‘doing the right thing in the right way’ (2014:3), which corresponds to a standard virtue ethical formulation for practical wisdom ( phronesis ), as elaborated upon, for instance, by Darnell et al. (2019) . Given that the police are often considered the most deontologically grounded of all professions (apart from the Army), the extent to which the interviews were steeped in a virtue of ethical language was surprising. Thus, as guided by the Code and in their application of its principles, police officers clearly saw the need to use autonomous phronetic discretion in interpreting and responding to situations, instead of the blind application of rules or maxims. From the interview data, there was a clear indication that the Code positively aligned with the interviewees’ personal moral codes, indicating that the Code had been internalized, or that individual moral codes were already reflected in the Code . Nevertheless, the findings from the survey, listed elsewhere ( Maile et al ., 2022 ), indicated that deontology is still the reasoning strategy that police officers and aspiring officers most often avail themselves of in solving police dilemmas—closely followed, however, by virtue of ethical reasoning.

Throughout the Code, the necessity for officers to demonstrate behavioural and emotion-related virtues, such as being able to show ‘compassion and empathy, as appropriate, to people you come into contact with’ (2014: 7), is foregrounded. This corresponds well with participants’ prioritization of effective and contextualized communication and emotional regulation. Alongside the Code sits the NDM, which offers five steps in guiding police officers in their ethical decision-making, emphasizing that police officers should use it ‘wisely’ (2014: 9) and with discretion. As such, the decision-making procedure is ‘inherently flexible’ (2014: 7).

Historically, police ethical codes have typically been offered as an antidote or replacement to covert yet prevalent cultural norms within the police known as the ‘blue code’ ( Westmarland and Rowe, 2018 ). Instead of becoming embroiled in a prevailing culture within the police, a written code thus enables officers to question and rethink the normative ‘police culture’ into which they are socialized. In addition, despite the Code not being explicitly grounded in a discrete ethical theory—or seeing the use of ‘principles’ as indicating a deontological heritage—its use of virtue terms and concepts, as opposed to a language of compliance, sets it apart from similar professional codes ( Earl and Moulin- Stožek, 2019 ). There is also no indication in the Code or in the NDM that either should replace the use of individual and shared discretion or reflective thinking by police officers. Rather, the NDM is offered as a guide for police officers through some of the necessary steps in order to reach a sound decision within the circumstances. When viewed through a virtue ethics lens, the NDM is similar to a neo-Aristotelian model and the components of phronesis , which encourages individuals to make well-grounded autonomous moral decisions ( Darnell et al. , 2019 ).

Importantly, while the overarching ‘duty’ of a police officer may be to uphold the public order, by applying the sections detailed in the Public Order Act (1986) in the same way as one would deductively apply formal rules, the concept of ‘public order’ remains a nebulous concept. While making an attempt to codify the concept of the ‘Queen’s Peace’ (referring to ‘public order’ in the UK), the formalistic royal road to determining what counts as a breach of public order is rocky, requiring professional knowledge and expertise. 4 It is a matter for the police to use their personal judgement and discernment, and the themes that have emerged from this research indicate that this is already occurring. This finding tallies with the emphasis in Wood’s book ( 2020 : 5) on ‘the ability of an officer to make sense of competing demands within different contexts, as opposed to following ethical rules of one kind or another’. This ‘ability’ is typically referred to in the virtue ethical literature as (professional) phronesis .

This understanding of phronesis , and the emergent themes from our qualitative analysis, highlight the necessity for police officers to cultivate and display the necessary personal and professional virtues required of them to do the right thing, at the right time, for the right reasons. Such phronetic decisions are critical, morally tethered, and properly deliberated and adjudicated upon.

Contributing to the professionalization of policing, the watershed review by Neyroud (2011) led to the establishment of the professional qualification framework for policing in England and Wales (PEQF; Brown et al. , 2018 ; Hunter and May, 2019 ). This educational focus of police training aligns with the need for policing to provide a more effective and knowledge-based response to contemporary issues ( Hallenberg and Cockcroft, 2017 ). However, as this paper reveals, more could be done to incorporate a stronger and more explicit ethical focus in police education and training, mirroring findings by Williams (2021) . Indeed, the rhetoric of professionalization and the need for autonomy and discretion in policing, highlighted in this paper, emphasize the requirement for policing environments and educational provision to support the development and exercise of professional phronesis . Such a shift is necessary in a profession that exacts significant levels of responsibility on its professionals, faces situations of high-level moral complexity, and demands professional competence at all times.

The themes identified in this study emphasize the role that phronesis (or phronesis -like discernment) plays in the moral practice of policing. As such, the authors of this paper and the associated project ( Kristjánsson et al ., 2021 ) recommend that any revisions to the Code ought to make explicit its ethical theoretical grounding, and recognize (and celebrate) the virtue ethical considerations it reflects. Such a move would reflect well the sentiments expressed by the 30 police officers interviewed, as well as developments in general professional ethics where virtue ethics is gradually replacing deontology as the theory of choice.

This work was supported by funding from the John Templeton Foundation, grant number 962685.

Note that while the Code of Ethics applies only to England and Wales, the participant sample includes police officers from Scotland.

The Code of Ethics is currently undergoing a review process by the College of Policing, which is likely to result in it being re-written. This paper focusses on the first iteration of the Code.

To clarify, this paper is specifically interested in the principles of the first iteration of the Code and the associated narrative, not the code of conduct utilized in misconduct proceedings.

While ss. 1-3 of the Public Order Act (1986) are tightly defined, there remains a role for professional judgement and discretion in interpreting whether s4, 4A, or 5, has been breached in any given circumstance.

Anteby M. , Chan C. K. , and Dibengigno J. ( 2016 ). ‘Three Lenses on Occupations and Professions in Organizations: Becoming, Doing, and Relating.’ The Academy of Management Annals 10 : 183 – 244 .

Google Scholar

Aristotle. ( 1985 ). Nicomachean Ethics , trans. T. Irwin . Indianapolis : Hackett Publishing .

Google Preview

Arthur , J. and Earl , S. R. ( 2020 ). ‘Character in the Professions: How Virtue Informs Practice. Research Report’. Jubilee Centre for Character and Virtues . Retrieved September 12, 2022, from https://www.jubileecentre.ac.uk/userfiles/jubileecentre/pdf/projects/TransformativeBritain/Professions_Report.pdf .

Bottoms , A. and Tankebe , J. ( 2012 ). ‘Beyond Procedural Justice: A Dialogic Approach to Legitimacy in Criminal Justice.’ Journal of Law and Criminology 102 : 119 – 170 .

Bottoms , A. and Tankebe , J. ( 2013 ). ‘“Voice Within”: Powerholders’ Perspectives on Authority and Legitimacy.’ In Tankebe , J. and Liebling , A. (eds), Legitimacy and Criminal Justice: An International Exploration . Oxford : Oxford University Press , pp. 60 – 82 .

Braun , V. and Clarke , V. ( 2006 ). ‘Using Thematic Analysis in Psychology.’ Qualitative Research in Psychology 3 ( 2 ): 77 – 101 .

Brown , J. , McDowall , A. , Gamblin , D. , and Fenn , L. ( 2018 ). ‘Assessing Transmission and Translation of Learning about Evidence-Based Policing by Graduate Trainee Police Officers.’ Policing 14 ( 1 ): 119 – 134 .

Carr , D. ( 1999 ). ‘Professional Education and Professional Ethics.’ Journal of Applied Philosophy 16 ( 1 ): 33 – 46 .

Carr , D. ( 2000 ). Professionalism and Ethics in Teaching . London : Routledge .

College of Policing. ( 2014 ). ‘Code of Ethics.’ https://www.college.police.uk/ethics/code-of-ethics .

Critchley , T. ( 1967 ). A History of the Police in England and Wales . London : Constable .

Darnell , C. , Gulliford , L. , Kristjánsson , K. , and Paris , P. ( 2019 ). ‘ Phronesis and the Knowledge-Action Gap in Moral Psychology and Moral Education: A New Synthesis?’ Human Development 62 : 101 – 129 .

Earl , S. R. and Moulin-Stožek , M. ( 2019 ). ‘Moving Towards Virtuous Professional Practice: A Summary of a Content Analysis of Professional Regulatory Documents and Codes of Conduct . ’ Insight Series Paper. https://www.jubileecentre.ac.uk/userfiles/jubileecentre/pdf/insight-series/MovingTowardsVirtuousProfessionalPractice.pdf .

Hallenberg , K. M. and Cockcroft , T. ( 2017 ). ‘From Indifference to Hostility: Police Officers, Organizational Responses and the Symbolic Value of ‘In-Service’ Higher Education in Policing.’ Policing 11 ( 3 ): 273 – 288 .

Her Majesty’s Inspectorate of Constabulary. ( 2022 ). ‘Inspection of the Metropolitan Police Service.’ https://www.justiceinspectorates.gov.uk/hmicfrs/publications/an-inspection-of-the-metropolitan-police-services-counter-corruption-arrangements-and-other-matters-related-to-the-daniel-morgan-independent-panel/ .

Holdaway , S. ( 2017 ). ‘The Re-professionalisation of the Police in England and Wales.’ Criminology and Criminal Justice 10 ( 1 ): 11 – 22 .

Home Office. ( 2014 ). ‘Home Office Guidance: Police Officer Misconduct, Unsatisfactory Performance and Attendance Management Procedures.’ https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/330235/MisconductPerformAttendanceJuly14.pdf .

Hough , M. ( 2021 ). Good Policing: Trust, Legitimacy and Authority . Bristol : Policy Press .

Hunter , G. and May , T. ( 2019 ). ‘Views from the Frontline: Graduate Police Recruits on the Status of Evidence-based Practice.’ Policing 14 ( 1 ): 91 – 103 .

Independent Office for Police Conduct. ( 2022 ). ‘Operation Hotton.’ https://www.policeconduct.gov.uk/sites/default/files/Operation%20Hotton%20Learning%20report%20-%20January%202022.pdf .

Jackson , J. , Bradford , B. , Hough , M. et al.  . ( 2012 ). ‘Why Do People Comply with the Law? Legitimacy and the Influence of Legal Institutions.’ The British Journal of Criminology 52 ( 6 ): 1051 – 1071 .

Jubilee Centre for Character and Virtues. ( 2016 ). ‘Statement on Character, Virtue and Practical Wisdom in Professional Practice’. Retrieved September 12, 2022, from https://www.jubileecentre.ac.uk/userfiles/jubileecentre/pdf/Statement_Character_Virtue_Practical_Wisdom_Professional_Practice.pdf .

Kant , I. ( 1964 ). Metaphysics of Morals , trans. M. J. Gregor . New York : Harper & Row .

Kleinig , J. ( 1999 ). The Ethics of Policing , Cambridge : Cambridge University Press .

Kristjánsson , K. ( 2015 ). Aristotelian Character Education. London : Routledge .

Kristjánsson , K. , Thompson , A. , and Maile , A. ( 2021 ). ‘Character Virtues in Policing. Research Report.’ Jubilee Centre for Character and Virtues. Retrieved September 12, 2022, from https://www.jubileecentre.ac.uk/userfiles/jubileecentre/pdf/Research%20Reports/CharacterVirtuesinPolicing_ResearchReport.pdf .

Legislation.gov.uk. ( 1986 ). Public Order Act 1986. [online] Available at: http://www.legislation.gov.uk/ukpga/1986/64 (accessed 10 October 2022 ).

MacVean , A and Spindler , P. ( 2015 ). ‘Principled and Ethical Policing: Some Considerations for Police Leaders.’ In Fleming , J. (ed.), Police Leadership: Rising to the Top . Oxford : Oxford University Press , pp. 110 – 128 .

Maile , A. , Thompson , A. , McLoughlin , S. , and Kristjánsson , K. ( 2022 ). ‘The choice of Deontological, Virtue Ethical, and Consequentialist Moral Reasoning Strategies by Pre- and In-Service Police Officers in the U.K.: An Empirical Study’. Ethics and Behaviour.

Manning , M.L. ( 2019 ). Policing as a Virtue: Moral Alignment and Legitimacy . Unpublished PhD Thesis , University of Essex .

Mark , R. ( 1977 ). Policing a Perplexed Society . London : George, Allen and Unwin .

Mill , J.S. ( 1863 ). Utilitarianism . London : Parker, Son & Bourn .

Morrell , K. and Bradford , B. ( 2019 ). Policing and Public Management: Governance, Vices and Virtues . London : Routledge .

Neyroud , P. ( 2006 ). ‘Ethics in Policing: Performance and the Personalisation of Accountability in British Policing and Criminal Justice.’ Legal Ethics 9 ( 1 ): 16 – 34 .

Neyroud , P. ( 2011 ). Review of Police Leadership and Training . London : Home Office .

Neyroud , P. and Beckley , A. ( 2001 ). Policing, Ethics and Human Rights . Cullompton : Willan .

Rowe , M. , Turner , E. , and Pearson , G. ( 2016 ). ‘Learning and Practicing Police Craft’. Journal of Organizational Ethnography 5 ( 3 ): 276 – 286 .

Schwartz , B. and Sharpe , K. E. ( 2010 ). Practical Wisdom: The Right Way to do the Right Thing. Riverhead Books.

Tankebe , J. ( 2019 ). ‘In Their Own Eyes: An Empirical Examination of Police Self-legitimacy.’ International Journal of Comparative and Applied Criminal Justice 43 ( 2 ): 99 – 116 .

Trinkner , R. , Jackson , J. , and Tyler , T. ( 2018 ). ‘Bounded Authority: Expanding “Appropriate” Police Behaviour Beyond Procedural Justice.’ Law and Human Behaviour 42 ( 3 ): 280 – 293 .

Tyler , T.R. ( 2006 ). Why People Obey the Law . Princeton : Princeton University Press .

Walker , D.I. ( 2018 ). ‘Character in the British Army: A Precarious Professional Practice.’ In Carr , D. (ed.), Cultivating Moral Character and Virtue in Professional Practice . London : Routledge , pp. 135 – 148 .

Westmarland , L. and Rowe , M. ( 2018 ). ‘Police Ethics and Integrity: Can a New Code Overturn the Blue Code?’ Policing and Society 28 : 854 – 870 .

Williams , C.A. ( 2021 ). How Does Internal, Initial Police Officer Training Affect Police Officer Ethical Decision-making? Unpublished PhD Thesis , University of Central Lancashire .

Williams , E. , Norman , J. , and Rowe , M. ( 2019 ). ‘The Police Education Qualification Framework: A Professional Agenda or Building Professionals?’ Police Practice and Research 20 ( 3 ): 259 – 272 .

Wood , D.A. ( 2020 ). Towards Ethical Policing . Bristol : Policy Press .

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Data Breaches & the National Decision Model (NDM)

Data breaches and losses should be a thing of the past, although recent high profile incidents highlight that this is still not the case. The mismanagement of data and information comes with potentially serious and very costly implications, particularly where personal information about vulnerable members of the public is concerned.

I recently read an article about a local authority who lost a memory stick holding sensitive information. Whilst I gather the memory stick was encrypted, it does raise questions around data sharing and security particularly when secure and trusted collaboration platforms pose such a compelling alternative to old ways of working.

Typically such incidents occur as a result of procedure not being followed and / or poor decision making.  Increasingly public services are looking to bring their processes in line with recognised International Standards (i.e ISO 27001 as Alliantist have) and decision models. One such model that is being implemented on a national basis is the Association of Chief Police Officers (ACPO) National Decision Model (NDM).

The NDM was designed by ACPO to help police officers and staff develop the professional judgement necessary to make effective policing decisions and to learn from the outcomes of those decisions, be they successful or unsuccessful. The NDM provides a “simple, logical and evidence-based approach to making policing decisions.”

The implementation of the NDM highlights a focus from the police on supporting the increasing demands on limited policing resources & mitigating risks through evidence-based decision making. “Decision makers will receive the support of their organisation in all instances where they can demonstrate that their decisions were assessed and managed reasonably in the circumstances existing at the time. This applies even where harm results from their decisions and actions.”

The inherent flexibility of the model makes it suitable for all types of police decisions, from spontaneous incidents to planned operations, and can be utilised by individuals or teams. “In every case, the model stays the same, but users decide for themselves what questions and considerations they apply at each stage.”

After looking at the model, we quickly recognised an opportunity to digitise the process. Through an easily repeatable framework for the NDM, users can quickly integrate this national model into the work they are currently doing on pam, either alone or with their partners, to start making better decisions, together.

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Decision-Making in Law Enforcement

• First Online: 02 September 2021

Cite this chapter

• Mark Roycroft 3  

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The greater accountability of police decision makers is unprecedented in all areas, including the management of critical incidents. The justifiable emphasis for particular scrutiny is on the effectiveness of the decisions made in major enquires. The police service has seen a vast increase in the transparency of police decision-making and the need for police officers of all ranks to justify, record and explain their decision-making. This chapter focuses upon the challenges and responsibilities faced by police officers. This chapter reviews and explores the naturalistic decision-making practices of officers and how they prioritise risk.

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Why Understanding Police Investigative Decision Making Is Important

History of decision-making, police officer decision-making in dispute encounters: digging deeper into the ‘black box’.

ACPO. (2006). Murder investigation manual . Wyboston: NPIA.

Google Scholar  

Ansoff, H. I. (1965). Corporate strategy . New York: McGraw Hill.

College of Policing. (2014). Authorised professional practice: National decision model . [online]. https://www.app.college.police.uk/app-content/national-decision-model/the-national-decision-model/ . Accessed 01 Sep 2018.

Cook, T., & Tattersall, A. (Eds.). (2016). Blackstone’s senior investigating officers handbook (4th ed.). Oxford: University Press.

Copple, C. K., & Copple, J. E. (2018). Risk Management in Law Enforcement: Discussions on Identifying and Mitigating Risk for Officers, Departments, and the Public . Washington, DC: Office of Community Oriented Policing Services.

Crego, J., & Harris, C. (2000). Do NDM and CDM theories mark the ends of a continuum? Or Does a hybrid approach better describe team-based decision-making problem solving processes with the management of critical incidents? Draft Paper July 2000. [online]. http://www.calt.demon.co.uk/critical%20incident%20management.htm . Accessed 06 Jan 2019.

Flin, F., & Arbuthnot, K. (2020). Ashgate Incident Command: Tales from the Hot Seat.

Irvine, B., & Dunningham, C. (1993). Human factors in the quality control of CID investigations research (Royal Commission on Criminal Justice, Research Study Number 21) . London: Home Office

Kind, S. (1987). The Scientific Investigation of Crime John Sherrat and Son Manchester.

Klein, H. J. (1989). An integrated control theory model of work motivation. The Academy of Management Review, 14 (2), 150–172. https://doi.org/10.2307/258414

Mark, R. (1978). In the office of constable . London: Collins.

Quinton, P., Bland, N., & Miller, J. (2000). Police stops, decision-making and practice (Police Research Series Paper 130) . London: Home Office

Rossmo, D. K. (2009). Criminal investigative failures . Boca Raton: CRC Press.

Roycroft, M. (2019). Decision Making in Police Enquiries and Critical Incidents . Palgrave Macmillan.

Roycroft, M., & Roach, J. (Eds.). (2019). Decision making in police enquires and critical incidents: What really works . London: Palgrave.

Schon, D. (1983). The reflective practitioner: How professionals think in action . New York: Basic Books.

Scraton, P. (2009). Hillsborough – The truth . Edinburgh: Mainstream Publishing UK.

Smith, N., & Flanagan, C. (2000). The effective detective: Identifying the skills of an effective SIO . London: Home Office.

Stelfox, P. (2009). Criminal investigation: An introduction to principles and practice . Oxon: Willan.

Turner, R. (2016). Hillsborough disaster: Five key mistakes . [online]. https://www.bbc.co.uk/news/uk-england-merseyside-35462767 . Accessed 20 Dec 2018.

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Roycroft, M. (2021). Decision-Making in Law Enforcement. In: Roycroft, M., Brine, L. (eds) Modern Police Leadership. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-030-63930-3_29

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4 Identifying potential solutions

4.1 decision making in policing.

In the following video, Police Officer Ben Hargreaves discusses the challenges around decision making for community safety.

While this is a powerful framework for problem solving (and has been adopted by police forces across the UK) it cannot be seen in isolation from the underlying social and psychological perspectives. Your own personal biases and preferences will have an impact on how you understand and interpret data and the way you relate to policies and ‘objective’ guidelines. Much of this will also be impacted by culture and the unspoken rules evident in organisations.

The National Decision Model

The NDM is a police framework designed to make the decision-making process easier and standardised. It should be used by all officers, decision makers and assessors who are involved in the whole decision process. Not only is it used for making decisions but to assess and judge those decisions. It can also be used to improve future decisions and help to create techniques and methods for many different situations.

The NDM is based around the police force mission statement and the Code of Ethics, which should be considered when completing each of the stages. You should ask yourself whether the action you are considering is consistent with the Code of Ethics, what the police service would expect, and what the community and the public as a whole would expect of you.

The NDM stages are:

Stage 1 Gather information about the problem in hand. Not only should you work out what you do know, but what you do not know. You will use the information gathered in stage 1 throughout the rest of the process and also when your decisions are being assessed and judged after the event.

Stage 2 Determine the threat, its nature and extent so that you can assess the situation and make the right decisions. Ask yourself, do you need to take the necessary action straight away or is this an ongoing problem? What is the most likely outcome and what would be the implications? Are the police the most appropriate people to deal with the problem, and are you best equipped to help resolve the problem at hand or would somebody else be better?

Stage 3 Knowing what the problem is, you will need to determine what powers you and the police have to combat the problem. Ask yourself which powers will be needed and if the required powers and policies need any additional or specialist assistance to be instigated and introduced. Is there any legislation that covers the process?

Stage 4 Armed with all of the information regarding the problem and any policies and other legislations that may exist, you are in a position to draw up a list of options. You should also use this opportunity to develop a contingency plan or a series of contingencies that can provide you with a backup plan if things do not go exactly to plan.

Stage 5 Once you have determined the most appropriate action, it is time to put this in place. Perform the most desirable action and, if necessary, begin the process again to get the best results possible. Review the process and determine whether or not you could have done things better and what you would do in the future if you were faced with a similar, or the same, problem.

Pentagon with text at the centre surrounded by five ovals with text. Block arrows pointing from central pentagon to each oval. Further block arrows pointing from each oval to the next in a clock-wise direction, indicating a cycle sequence.

Central pentagon text is ‘Code of Ethics’

Oval text as follows moving clockwise:

12 o’clock ‘Gather information and intelligence’

2 o’clock ‘Assess threat and risk and develop a working strategy’

5 ‘clock ‘Consider powers and policy’

7 o’clock ‘Identify options and contingencies’

10 o’clock ‘Take action and review what happened’

When it comes to policing, there are many standard decision making models to refer to such as OSARA and the National Decision Model. What they share is an attempt to put a common, objective framework on decision making efforts so that decisions can be objectively supported and justified, can be explained to colleagues and can be clearly analysed for lessons and understanding after the fact

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• Blackstone's Police Manual Volume 3: General Police Duties 2024
• Blackstone's Police Investigators' Manual 2024
• Blackstone's Police Investigators' Workbook 2024
• Blackstone’s Handbook for Policing Students
• Blackstone’s Handbook for Policing Students 2024
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Blackstone's Crime Investigators' Handbook

• Abbreviations
• Chapter 1 Role of a Criminal Investigator
• Chapter 2 Investigative Decision Making
• Chapter 3 General Investigative Practice
• Chapter 4 Initial Stages of an Investigation
• Chapter 5 Crime Scenes, Searches and Exhibits
• Chapter 6 Forensic Investigation
• Chapter 7 Core Investigative Strategies
• Chapter 8 Managing Witnesses
• Chapter 9 Managing Suspects
• Chapter 10 Crime Types and their Investigation
• Chapter 11 Investigating Sudden and Unexplained Deaths
• Chapter 12 Proactive Investigation and Preventative Measures
• Chapter 13 Case Management and Disclosure
• Chapter 14 Court Process and Giving Evidence
• Appendix Checklist: 50 Initial Considerations for Crime Investigators

Chapter 2 p. 25 Investigative Decision Making

• Steve Hibbitt
•  and Gary Shaw
• https://doi.org/10.1093/law/9780192867896.003.0002
• Published in print: 17 February 2023
• Published online: 23 August 2023

This chapter discusses some fundamental processes, principles, and approaches to investigative decision making and problem solving, including the application of what is known as the ‘investigative mindset’. Investigative decision making relies upon accurate and reliable information which must be carefully scrutinised, reviewed, assessed, and evaluated. This involves testing the accuracy, reliability, and relevance of any material that the decision is to rely upon. For many years, investigators have known this as the ‘ABC’ principle. The chapter then looks at the National Decision Model (NDM), which was adopted as part of a concerted drive to ensure a greater focus on delivering the mission of policing, acting in accordance with police values, enhancing the use of discretion, reducing risk aversion and supporting the appropriate allocation of limited resources. It also considers the 5WH method, which helps to generate information by structuring relevant questions. Finally, the chapter studies the process of developing and using hypotheses and decision recording, as well as the concepts of heuristics and biases.

• investigative decision making
• problem solving
• investigative mindset
• ABC principle
• National Decision Model
• decision recording

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News Release

Tuesday, July 23, 2024

NIH findings shed light on risks and benefits of integrating AI into medical decision-making

AI model scored well on medical diagnostic quiz, but made mistakes explaining answers.

Researchers at the National Institutes of Health (NIH) found that an artificial intelligence (AI) model solved medical quiz questions—designed to test health professionals’ ability to diagnose patients based on clinical images and a brief text summary—with high accuracy. However, physician-graders found the AI model made mistakes when describing images and explaining how its decision-making led to the correct answer. The findings, which shed light on AI’s potential in the clinical setting, were published in npj Digital Medicine .   The study was led by researchers from NIH’s National Library of Medicine (NLM) and Weill Cornell Medicine, New York City.

“Integration of AI into health care holds great promise as a tool to help medical professionals diagnose patients faster, allowing them to start treatment sooner,” said NLM Acting Director, Stephen Sherry, Ph.D. “However, as this study shows, AI is not advanced enough yet to replace human experience, which is crucial for accurate diagnosis.”

The AI model and human physicians answered questions from the New England Journal of Medicine (NEJM)’s Image Challenge. The challenge is an online quiz that provides real clinical images and a short text description that includes details about the patient’s symptoms and presentation, then asks users to choose the correct diagnosis from multiple-choice answers.

The researchers tasked the AI model to answer 207 image challenge questions and provide a written rationale to justify each answer. The prompt specified that the rationale should include a description of the image, a summary of relevant medical knowledge, and provide step-by-step reasoning for how the model chose the answer.

Nine physicians from various institutions were recruited, each with a different medical specialty, and answered their assigned questions first in a “closed-book” setting, (without referring to any external materials such as online resources) and then in an “open-book” setting (using external resources). The researchers then provided the physicians with the correct answer, along with the AI model’s answer and corresponding rationale. Finally, the physicians were asked to score the AI model’s ability to describe the image, summarize relevant medical knowledge, and provide its step-by-step reasoning.

The researchers found that the AI model and physicians scored highly in selecting the correct diagnosis. Interestingly, the AI model selected the correct diagnosis more often than physicians in closed-book settings, while physicians with open-book tools performed better than the AI model, especially when answering the questions ranked most difficult.

Importantly, based on physician evaluations, the AI model often made mistakes when describing the medical image and explaining its reasoning behind the diagnosis — even in cases where it made the correct final choice. In one example, the AI model was provided with a photo of a patient’s arm with two lesions. A physician would easily recognize that both lesions were caused by the same condition. However, because the lesions were presented at different angles — causing the illusion of different colors and shapes — the AI model failed to recognize that both lesions could be related to the same diagnosis.

The researchers argue that these findings underpin the importance of evaluating multi-modal AI technology further before introducing it into the clinical setting.

“This technology has the potential to help clinicians augment their capabilities with data-driven insights that may lead to improved clinical decision-making,” said NLM Senior Investigator and corresponding author of the study, Zhiyong Lu, Ph.D. “Understanding the risks and limitations of this technology is essential to harnessing its potential in medicine.”

The study used an AI model known as GPT-4V (Generative Pre-trained Transformer 4 with Vision), which is a ‘multimodal AI model’ that can process combinations of multiple types of data, including text and images. The researchers note that while this is a small study, it sheds light on multi-modal AI’s potential to aid physicians’ medical decision-making. More research is needed to understand how such models compare to physicians’ ability to diagnose patients.

The study was co-authored by collaborators from NIH’s National Eye Institute and the NIH Clinical Center; the University of Pittsburgh; UT Southwestern Medical Center, Dallas; New York University Grossman School of Medicine, New York City; Harvard Medical School and Massachusetts General Hospital, Boston; Case Western Reserve University School of Medicine, Cleveland; University of California San Diego, La Jolla; and the University of Arkansas, Little Rock.

The National Library of Medicine (NLM) is a leader in research in biomedical informatics and data science and the world’s largest biomedical library. NLM conducts and supports research in methods for recording, storing, retrieving, preserving, and communicating health information. NLM creates resources and tools that are used billions of times each year by millions of people to access and analyze molecular biology, biotechnology, toxicology, environmental health, and health services information. Additional information is available at https://www.nlm.nih.gov.

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov .

NIH…Turning Discovery Into Health ®

Qiao Jin, et al. Hidden Flaws Behind Expert-Level Accuracy of Multimodal GPT-4 Vision in Medicine. npj Digital Medicine. DOI: 10.1038/s41746-024-01185-7 (2024).

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Creating a health informatics data resource for hearing health research

• Nishchay Mehta 1 , 2 ,
• Baptiste Briot Ribeyre 1 , 3 ,
• Lilia Dimitrov 1 , 2 ,
• Louise J. English 1 , 3 ,
• Colleen Ewart 4 ,
• Antje Heinrich 5 , 6 ,
• Nikhil Joshi 1 , 2 ,
• Kevin J. Munro 5 , 6 ,
• Gail Roadknight 8 ,
• Luis Romao 1 , 3 ,
• Anne Gm Schilder 1 , 2 ,
• Ruth V. Spriggs 9 , 10 ,
• Ruth Norris 5 , 11 ,
• Talisa Ross 1 , 2 , 7 &
• George Tilston 5 , 11  

BMC Medical Informatics and Decision Making volume  24 , Article number:  209 ( 2024 ) Cite this article

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The National Institute of Health and Social Care Research (NIHR) Health Informatics Collaborative (HIC) for Hearing Health has been established in the UK to curate routinely collected hearing health data to address research questions. This study defines priority research areas, outlines its aims, governance structure and demonstrates how hearing health data have been integrated into a common data model using pure tone audiometry (PTA) as a case study.

After identifying key research aims in hearing health, the governance structure for the NIHR HIC for Hearing Health is described. The Observational Medical Outcomes Partnership (OMOP) was chosen as our common data model to provide a case study example.

The NIHR HIC Hearing Health theme have developed a data architecture outlying the flow of data from all of the various siloed electronic patient record systems to allow the effective linkage of data from electronic patient record systems to research systems. Using PTAs as an example, OMOPification of hearing health data successfully collated a rich breadth of datapoints across multiple centres.

This study identified priority research areas where routinely collected hearing health data could be useful. It demonstrates integration and standardisation of such data into a common data model from multiple centres. By describing the process of data sharing across the HIC, we hope to invite more centres to contribute and utilise data to address research questions in hearing health. This national initiative has the power to transform UK hearing research and hearing care using routinely collected clinical data.

Peer Review reports

An estimated 12 million UK adults have hearing loss. This is set to rise to 14.2 million by 2035 [ 1 , 2 ]. The total cost in the UK of untreated, disabling hearing loss is estimated at £25.5 billion annually [ 3 ]. Hearing loss affects functioning, communication [ 4 ], social interactions [ 5 ] and employment opportunities [ 6 ].

Despite hearing loss ranking third for Years Lived with Disability [ 7 ] and being the commonest sensory disorder [ 8 ], it receives less than 1% of UK research funding [ 9 ]. Research funding spent for hearing loss per individual is only £1, compared to £11 for sight loss. Efforts are underway to raise awareness and increase the budget for hearing research [ 10 ].

This article highlights how the National Institute of Health and Social Care Research (NIHR) Health Informatics Collaborative (HIC) for Hearing Health [ 11 ] has been established. We first list priority research areas where data could be useful, then outline the NIHR HIC Hearing Health’s aims, governance structure and study adoption processes. We demonstrate how hearing health data have been integrated into a common data model, using pure tone audiometry (PTA) as a case study. Finally, we detail how health data from contributing centres are ingested and stored.

Priority areas for data driven hearing research

Most estimates on the prevalence of hearing loss are from the 1980s [ 12 ]. There is a need for up-to-date data on the burden of hearing loss, causes, risk factors and predictors of progression so that new and effective treatments can be developed.

Hearing loss is unequally distributed, with people from lower socioeconomic and ethnic minority backgrounds being at higher risk [ 13 , 14 ]. Since these groups are less likely to seek interventions and participate in research, true risk may be underestimated, calling for novel approaches to include data from these groups.

Hearing loss has recently been linked to other chronic conditions such as dementia [ 15 ], diabetes [ 16 ] and falls [ 17 ]. Data-driven approaches could disentangle these associations and provide possible models of causation.

Hearing devices are the most common treatment for adults with hearing loss. The NHS is the largest purchaser of hearing aids worldwide, procuring 1.2 million annually. However, most people with aidable hearing loss never receive a hearing aid [ 18 ] and those that do may not always use them. Identifying patient, disease and device characteristics that predict who is most unlikely to be offered or use hearing devices would help devise strategies to improve uptake and usage.

Recent insights in genetic and molecular mechanisms causing hearing loss [ 19 ] have allowed detection of therapeutic targets and development of therapies aimed at protecting or restoring hearing [ 20 ]. These highly targeted treatments call for large scale geno- and phenotyping efforts to improve patient selection for upcoming clinical trials.

National Institute of Health and Social Care Research Health Informatics Collaborative.

The UK offers a unique infrastructure for data-driven research because 80% of all healthcare is provided by the National Health Service (NHS). This creates an unparalleled flow of routine health data across diverse ethnic and socio-economic groups [ 21 ]. To standardise and combine data across NHS providers, NIHR established its HIC; a collaboration between NHS trusts and their partner universities, hosted by the Biomedical Research Centres (BRCs) [ 22 ]. The NIHR HIC brings together clinical, scientific, and informatics expertise to support the establishment and maintenance of catalogued, comparable, and comprehensive flows of patient data at each Trust, and to create a governance framework for data sharing and re-use across the trusts and partner organisations.

NIHR HIC hearing heath theme

Recognising clinical need and opportunities for hearing health, the NIHR HIC Hearing Health theme was established in 2022. It aims to bring together the following routinely collected hearing health data and repurpose them for research. We interviewed NHS England, local commissioning groups, NHS procurement and NHS genomics to better understand hearing data collected through NHS organisations across England. Parameters included number of individuals undergoing hearing tests as part of the newborn hearing screen, volume of routine hearing consultations, number of audiometric assessments, number of hearing devices fitted and amount of requests for hearing panels. Based on responses received, the following was obtained:

New-born hearing screen

This national programme uses automated oto-acoustic emissions (OAE) at birth and auditory brainstem response (ABR) for those who fail or have specific risk factors. Since 2017, the UK has had between 680,000 and 750,000 births annually and a coverage of the new-born hearing screen of > 95%. This equates to hearing data of over three million patients, of which 80,000 failed the initial OAE screen and had ABR, and an estimated 5,000 who had confirmed permanent hearing loss.

Routine hearing loss consultations

Across the UK, 355,000 new consultations by audiologists and ENT surgeons are undertaken for hearing loss annually. These provide data on demographics, hearing symptoms, risk factors and interventions. Data are documented in electronic hospital records.

Audiometric assessments

Audiometric assessments inform the diagnosis of hearing loss and effects of interventions. Each of the 106 UK Clinical Commissioning Groups commissions 10,000–30,000 assessments annually, totalling 10 million hearing tests over five years, stored on NHS hospital or audiology clinic servers in codified format.

Hearing devices

The NHS is the largest procurer of hearing aids in the world, fitting new hearing aids for the first time on 355,000 adults annually. Additionally, 1,000 NHS patients receive cochlear implants annually, with over 12,000 NHS patients with cochlear implants so far. Data on the provision, maintenance, and use of these devices, as well as user, environmental and impedance data are stored on NHS servers.

Genetic testing for hearing loss

Since 2021, all children and adults in the UK with potential inherited causes of bilateral sensorineural hearing loss are eligible for genetic testing. There has been an increase in the number of hearing loss gene panels requested, with nearly 1000 requested in 2022.

NIHR HIC hearing health theme key topics

Between 2nd December 2020 and 16th January 2021, a stakeholder consultation took place online using a newly developed questionnaire on the platform Select Surveys (Appendix 1). It was aimed at clinicians, academic scientists and industry partners. They were asked to list any questions they would like to see formally investigated relating to diagnosis/assessment, treatment/ intervention and follow-up support. A total of 74 stakeholders (34 clinicians, 33 academic scientists, 7 industry partners) responded. The responses were condensed into four key topics:

Exploration of effects of known and novel risk factors such as disease clustering for hearing loss.

Identification of genetic causes of hearing loss.

Definition of hearing loss sub-types.

Optimisation of benefit from individualised treatment strategies.

NIHR HIC hearing health theme governance

The NIHR HIC Hearing Health theme is co-led by the founding BRCs: University College London Hospital Trust (UCLH), Nottingham University Hospitals Trust (NUH) and Manchester Foundation Trust (MFT), and their academic partners. Patients are key to decision-making processes. Specifically, regulation around the national data opt-out was directly informed by patient representatives. Patient public involvement (PPI) support is offered to all researchers submitting study requests to ensure that their research question is in line with patient priorities, and that their research study includes proportionate and meaningful PPI.

Data contribution and management

All NHS hearing health providers are encouraged to join the NIHR HIC Hearing Health theme as contributing centres, and contribute their locally stored, de-identified datasets to the central data repository, which is stored in a secure server at University College London (UCL).

The NIHR HIC Hearing Health theme does not allow any data to be removed once it has arrived in the data repository. All researchers at contributing centres are welcome to submit a study request for approval by the steering committee. Once the request is approved, the study is added to the Hearing Health HIC’s portfolio, and researchers are allowed to undertake research within the secure server at UCL.

Further detail is available here, which describes the framework through which we created this resource ( https://github.com/uclh-criu/hic-hearing-health-docs ) and specific code that relates to a licensed version of their electronic patient record can be accessed upon request.

The protocol for the collection and management of data was approved by Central Bristol Research Ethics Committee (Reference Number: 21/SW/0139).

NIHR data sharing agreement

All NHS hearing health providers can contribute data to the NIHR HIC Hearing Health theme under the NIHR data sharing framework. This covers a range of data and research collaborations and must be signed by all contributing centres. The NIHR HIC data sharing framework addresses common requirements and considerations regarding data sharing between centres, contractual responsibilities, confidentiality, intellectual property and a publications policy. This general agreement will underpin individual agreements for research collaborations with third party academic, clinical and industry partners. Any collaboration with industry partners requires additional agreements, with additional governance checks by participating sites. Industry partners will only be allowed to participate in research by collaborating with a contributing centre.

The HIC has applications to other international healthcare systems where existing relationships between hospitals and academic institutes exist, however given that it focuses on the UK based on the NIHR data sharing agreement, this is a limitation of this paper that its application is not directly transferrable and inevitably obstacles may be encountered in other counties based on local frameworks.

Study adoption

The process that allows hearing health researchers from contributing centres to undertake research on the NIHR HIC Hearing Health theme’s dataset is summarised in Fig.  1 .

Process of requesting approval to use NIHR HIC Hearing Health data for research

Researchers from contributing centres can request to undertake an analysis on existing data, or can request new data fields to be extracted from contributing centres to be added to the central data repository for the purpose of their study.

The steering committee reviews study requests from researchers at contributing centres. At the quarterly meeting, each proposal is reviewed by the contributing centres and PPI group, and a decision is made, through consensus amongst the steering committee, as to whether the study should be adopted, rejected, or sent back for further refinement. Studies may be rejected if they do not align with the key topics described above or are unachievable.

For studies that are to be adopted by the NIHR HIC Hearing Health theme, each centre is given the opportunity to submit their de-identified hospital data for pooled analysis. This offers each centre continued autonomy over their local data, irrespective of where the data are housed. This policy has been introduced following patient and key stakeholder input into anxieties over loss of autonomy over local data.

Researchers from the approved study centre will be onboarded to the central data repository and given access to the environment to analyse an excerpt of the dataset that is relevant to their study questions. Whilst the results of their analyses can be extracted from the secure environment, no raw data will be sent out.

Development of a common data model

Hearing healthcare data are stored across multiple platforms on local servers. Since 2002, all providers of NHS hearing aids have moved to patient management systems as part of the Department of Health and Social Care Modernising Hearing Aid Services; however, these management systems preceded electronic patient records and are not integrated with Trust electronic care records or with each other. No healthcare recording system currently exists that collects and stores all NHS hearing healthcare information within a single database. Each hospital has its own data flow and software specific databases. This is because a multitude of proprietary audiology-specific hard- and software products are used.

The variety of electronic patient record systems means that assessment and management data are stored across multiple software databases:

Diagnostic hearing tests are undertaken using locally purchased proprietary hardware, each with its own software and data model (assessment).

Hearing aid fitting is undertaken through manufacturer specific hardware, each with its own software and data model (management).

Patient management system stores patient data.

Linkage software communicates between the above software systems that stores its own versions of datasets.

The integration of assessment and management data is undertaken by a third-party software called NOAH, developed by Hearing Instrument Manufacturers’ Software Association (HIMSA). NOAH’s primary function is to provide a unified system managing data collected during a diagnostic hearing test, which can then be used by manufacturer-specific hearing aid fitting systems. NOAH software is built into patient management software, which captures appointment level data and allows a single portal to link assessment and management.

Locally, databases exist for diagnostic hearing tests, hearing aid fitting software, NOAH and clinical management systems, each storing part of the dataset (see Fig.  2 ). In addition to hearing-related information, general operational data around patient referrals, waiting times and staffing capacity are stored on bespoke databases. Medical information, including surgical interventions is captured on general hospital medical records, whilst imaging data is stored on Picture Archiving and Communication Systems (PACS).

Local databases for auditory assessment (green) and hearing aid fitting (blue) and patient management (orange) all need to be combined in a meaningful way

Combining all these different types of data in a meaningful way is challenging. The NIHR HIC Hearing Health theme have developed a data architecture outlying the flow of data from all the various siloed electronic patient record systems to allow the effective linkage of data from electronic patient record to research systems.

Data extraction, linkage and standardisation, within contributing centres.

Whilst each software package allows patient by patient data review and occasionally extraction, very few allow wholesale extraction. Using Open Database Connectivity (ODBC), an application programming interface, we have been able to extract all diagnostic hearing tests and hearing device fitting data stored on audiology patient management software, which generally are all based on SQL databases.

The architecture of the database, as well as data structure within each database, varies between software packages. We pursued manufacturers to release internal database architecture and data keys. This information was used to identify and decode key data fields, such as patient identifiers and clinical fields such as hearing test results.

Using probabilistic linkage algorithms, based on national ID, hospital ID, name, date of birth, we linked hearing data to hospital medical records. We prioritised demographic data from patient medical records if they conflicted with patient management software. Patients who signed up for the national data opt-out were removed from the cohort.

The formats in which demographics, diagnoses, and treatments are stored within separate databases within and across hospitals do not always match. Therefore, we opted to convert all data into a model using common data terminologies. We chose the Observational Medical Outcomes Partnership (OMOP) as our common data model. This is an international data model that enables the capture of information (e.g., encounters, patients, providers, diagnoses, drugs, devices, measurements and procedures) in the same way across different institutions. Its usefulness has been demonstrated in multiple health themes [ 23 ]. This model is coding language agnostic and maps across multiple vocabularies. Additionally, OMOP does not require a specific technology. It can be realised in any relational database, such as Oracle, SQL Server etc. or as SAS analytical datasets.

The NIHR HIC Hearing Health OMOP data model outlines the structure of the dataset and the associations between the data fields. Local vocabularies are mapped onto standardised OMOP vocabularies and labelled with OMOP domains.

To provide details on how we standardised data with OMOP, we have used hearing test data as an example.

A case study: omopification of hearing test data

The challenge.

PTA is the standard test of hearing [ 24 ]. It measures the lowest level (in Decibels) that a pure tone can be reliably heard at multiple sound frequencies in each ear (Hertz). The sound can be presented to the ear canal (air conduction), or onto the bone behind the ear (bone conduction). The non-tested ear can be deliberately presented with noise (masking) to prevent it from hearing sound presented to the test ear.

There are already several PTA-related concepts imported from various clinical vocabularies into the OMOP framework (Table  1 ). However, there is no architecture that inter-relates these codes. As such, new classifications and an inter-relational architecture were required.

The solution

We mapped test outcomes from PTA to OMOP by having a [Procedure_Occurrence] record for each test performed. The most appropriate OMOP procedure concept (from the Systematized Nomenclature of Medicine - SNOMED - vocabulary) was used in each case (e.g. 4091134 = Pure tone audiometry, or 4091877 = Soundfield audiometry). Multiple records from the [Observation] table were then related to the [Procedure_Occurrence], to describe results for each frequency (and ear) tested. Concepts such as masking level, air conduction or bone conduction could then be related to the [Observation], whereas concepts such as headphone (worn over the ear) or inserts (worn in the ear) could be related to the [Procedure Occurrence]. Fact relationship tables were used to communicate these relations [ 25 ]. These tables allow relationships to be defined between concepts from the same table or different tables. Figure  3 shows the structure of how codes were linked using fact relationships, using a few common examples. Whilst codes exist for most variables, some local codes were developed when no concept was previously available, for example to assign noise status (see Fig.  3 ).

Examples of linking structure of codes using fact relationships

Data pipeline for collection and integration of data, between contributing centres

The process of data flow from contributing centres to the central data repository is summarised in Fig.  4 . The HIC Data Alchemist platform has been designed to import data from contributing centres within the NIHR HIC Hearing Health theme into a centralised OMOP database. This platform was established to manage data provided in its most raw form, as CSV files compliant with RFC 4180, placing as little burden as possible on individual hospitals. Data is provided in data bundles, each of a different data type, allowing the contributing centre to progressively build their data contribution. Each data bundle focuses on a different goal. This stepwise process facilitates incremental development and feedback. To progress to the next data bundle, the previous data bundle must be completed to a specific standard. Compliance will be measured strictly, as any issues at an early stage may create a risk for further data bundles.

The different stages of data standardisation and integration from different types of data across a variety of platforms and providers within the field of hearing health research. There are two main steps:1. Step 1: generate local view of the uploaded CSV files for the sites to inspect and ensures it has been possible to load data into the database2. Step 2: updates and merges site’s existing data with newly ingested data, ensuring there are valid foreign keys (a system of connecting different tables of data), duplicates have been removed and deletions and updates have been processed to obtain the latest local version of a site’s data

Integration

Each data bundle undergoes a data ingestion process that runs from handling raw CSV files to integration within the multisite database (see Fig.  4 ).

Further details about the HIC Data Alchemist can be found at https://uclh-criu.github.io/hic-hearing-health-docs/ .

Data is stored in the UCL Data Safe Haven (DSH). This is an ISO27001 certified and NHS Data Security Protection Toolkit compliant Trusted Research Environment (TRE). Processing, analysis and storage capabilities exceed what is available to hospital-based researchers and include a full High Performance Computing cluster, cutting-edge GPU computing nodes for AI research, end-user environments with the latest analytical software and the facility to host any database or application server on enterprise-grade virtual machine infrastructure.

The NIHR HIC Hearing Health theme Research Database has been developed and is in the process of OMOPification. Data ingestion is underway. The data collected fall into the following categories: (a) basic information (e.g., demographics, hospital visits, death, discharge and study sites), (b) laboratory data, (c) treatments, (d) diagnoses, (e) hearing test data, (f) device data and (g) other clinical information.

An NIHR HIC Hearing Health theme has been established, to bring together routinely collected hearing health data, to address urgent research questions in an efficient and cost-effective way. After identifying priority research areas where these data could be useful, the NIHR HIC Hearing Health’s aims, governance structure and study adoption processes were identified. Key hearing health data can be integrated into a common data model. Health data from contributing centres are ingested and stored on a research ready database. Data across a variety of platforms and providers within the field of hearing health research can be standardised and integrated. By detailing the process of sharing data and submitting research proposals we hope to inspire more hearing-health researchers and NHS trusts to contribute to the database and use the wealth of its data to address urgent questions in hearing-health research. This national initiative has the power to transform UK hearing research and hearing care using routinely collected clinical data.

Data availability

All the raw data (including participants’ voice files and the texts of the interviews) will be confidential and will not be able to share publicly. However, the codes that emerged during the current study are available from the corresponding author upon reasonable request.

Royal National Institute for the Deaf. Facts and figures - RNID. https://rnid.org.uk/about-us/research-and-policy/facts-and-figures/ (accessed 12 Apr 2023).

Office of National Statistics. 2011 censuses UK comparability report. https://www.ons.gov.uk/census/planningforcensus2021/ukcensusdata (accessed 12 Apr 2023).

Shield B. Hearing Loss-Numbers and Costs EVALUATION OF THE SOCIAL AND ECONOMIC COSTS OF HEARING IMPAIRMENT A report for Hear-It AISBL. 2019.

Demorest ME, Erdman SA. Relationships among behavioral, environmental, and affective communication variables: a canonical analysis of the CPHI. J Speech Hear Disorders. 1989;54:180–8. https://doi.org/10.1044/jshd.5402.180 .

Article   CAS   Google Scholar  

Meadow-Orlans KP. Social and psychological effects of hearing loss in adulthood: a literature review. Adjustment Adult Hear loss 1985;:35–57.

Shan A, Ting JS, Price C, et al. Hearing loss and employment: a systematic review of the association between hearing loss and employment among adults. J Laryngol Otol. 2020;134:387–97. https://doi.org/10.1017/S0022215120001012 .

Article   CAS   PubMed   Google Scholar  

Haile L, Orji A, Briant P, et al. Updates on hearing from the global burden of Disease Study. Innov Aging. 2020;4:808–808. https://doi.org/10.1093/geroni/igaa057.2934 .

Article   PubMed Central   Google Scholar  

Raviv D, Dror AA, Avraham KB. Hearing loss: a common disorder caused by many rare alleles. Ann N Y Acad Sci. 2010;1214:168–79. https://doi.org/10.1111/j.1749-6632.2010.05868.x .

Article   CAS   PubMed   PubMed Central   Google Scholar  

The Lancet. Calling for research into deafness. Lancet. 2007;370:1738. https://doi.org/10.1016/S0140-6736(07)61729-2 .

Article   Google Scholar  

Wilson BS, Tucci DL, O’Donoghue GM, et al. A Lancet Commission to address the global burden of hearing loss. Lancet. 2019;393:2106–8. https://doi.org/10.1016/S0140-6736(19)30484-2 .

Article   PubMed   Google Scholar  

Health Informatics Collaborative – National Institute for Health Research. https://hic.nihr.ac.uk/ (accessed 12 Apr 2023).

Davis AC. The prevalence of hearing impairment and reported hearing disability among adults in Great Britain. 1389. https://academic.oup.com/ije/article/18/4/911/683421 .

Tsimpida D, Kontopantelis E, Ashcroft DM, et al. Regional patterns and trends of hearing loss in England: evidence from the English longitudinal study of ageing (ELSA) and implications for health policy. BMC Geriatr. 2020;20:536. https://doi.org/10.1186/s12877-020-01945-6 .

Article   PubMed   PubMed Central   Google Scholar  

Sawyer CS, Armitage CJ, Munro KJ, et al. Correlates of hearing Aid Use in UK adults. Ear Hear. 2019;40:1061–8. https://doi.org/10.1097/AUD.0000000000000695 .

Lin FR, Albert M. Hearing loss and dementia – who is listening? Aging Ment Health. 2014;18:671–3. https://doi.org/10.1080/13607863.2014.915924 .

Samocha-Bonet D, Wu B, Ryugo DK. Diabetes mellitus and hearing loss: a review. Ageing Res Rev. 2021;71:101423. https://doi.org/10.1016/j.arr.2021.101423 .

Lin FR. Hearing loss and Falls among older adults in the United States. Arch Intern Med. 2012;172:369. https://doi.org/10.1001/archinternmed.2011.728 .

Chien W. Prevalence of hearing Aid Use among older adults in the United States. Arch Intern Med. 2012;172:292. https://doi.org/10.1001/archinternmed.2011.1408 .

Melgar-Rojas P, Alvarado JC, Fuentes-Santamaría V et al. Cellular mechanisms of Age-related hearing loss. 2015. 305–33. https://doi.org/10.1007/978-3-319-13473-4_15 .

Schilder AGM, Su MP, Mandavia R, et al. Early phase trials of novel hearing therapeutics: avenues and opportunities. Hear Res. 2019;380:175–86. https://doi.org/10.1016/j.heares.2019.07.003 .

Rai T, Dixon S, Ziebland S. Shifting research culture to address the mismatch between where trials recruit and where populations with the most disease live: a qualitative study. BMC Med Res Methodol. 2021;21:80. https://doi.org/10.1186/s12874-021-01268-z .

Experimental medicine | NIHR. https://www.nihr.ac.uk/explore-nihr/support/experimental-medicine.htm (accessed 12 Apr 2023).

Reinecke I, Zoch M, Reich C et al. The Usage of OHDSI OMOP – A Scoping Review. 2021. https://doi.org/10.3233/SHTI210546 .

ISO 8253-1. 2010(en), Acoustics — Audiometric test methods — Part 1: Pure-tone air and bone conduction audiometry. https://www.iso.org/obp/ui/#iso:std:iso:8253:-1:ed-2:v1:en (accessed 12 Apr 2023).

documentation:cdm:single. -page [Observational Health Data Sciences and Informatics]. https://www.ohdsi.org/web/wiki/doku.php?id=documentation:cdm:single-page (accessed 12 Apr 2023).

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Nishchay Mehta, Baptiste Briot Ribeyre, Lilia Dimitrov, Louise J. English, Nikhil Joshi, Luis Romao, Anne Gm Schilder & Talisa Ross

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Planning – NM, BBR, LD, LJE, CE, AH, NJ, KM, GR, LR, AS, RVS, RN, TR, GTConception and design– NM, BBR, LD, LJE, CE, AH, NJ, KM, GR, LR, AS, RVS, RN, TR, GTAcquisition of data– NM, BBR, LD, LJE, CE, AH, NJ, KM, GR, LR, AS, RVS, RN, TR, GTAnalysis– NM, BBR, LD, LJE, CE, AH, NJ, KM, GR, LR, AS, RVS, RN, TR, GTWrite up– NM, BBR, LD, LJE, CE, AH, NJ, KM, GR, LR, AS, RVS, RN, TR, GT.

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Mehta, N., Ribeyre, B.B., Dimitrov, L. et al. Creating a health informatics data resource for hearing health research. BMC Med Inform Decis Mak 24 , 209 (2024). https://doi.org/10.1186/s12911-024-02589-x

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Dementia Research Responding to the Need Through Autonomous Choice

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Dementia is progressive and is characterized by fluctuating cognition, which presents challenges in the assessment of decision-making capacity and, ultimately, for informed consent. The responsibility for ethical research combined with the fluctuating cognition associated with dementia necessitates using a flexible decision-making and capacity assessment process that respects the autonomy of the participant, the uneven decline associated with the disease process, and responds to the urgent need for increased participation in studies.

INTRODUCTION

Dementia, a common neurodegenerative disorder, is a leading cause of death worldwide and is estimated to affect more than 55 million people. [1] In the United States, 1 in 9 (6.7 million) people aged 65 and older have Alzheimer’s disease—the most common type of dementia. [2] While dementia is a research priority and the National Institutes of Health funding for it exceeds $3.7 billion annually, further clinical research and research participants are needed to understand and identify new approaches to prevent, diagnose, and treat dementia. [3] A significant barrier to research is the recruitment of persons with dementia as participants, specifically because of challenges in evaluating decision-making capacity and obtaining truly informed consent. [4]

Continued successful advocacy for additional dementia research requires more research at all stages of the dementia disease process [5] to better understand how and why the brain changes. [6] To reduce the physical, psychological, and financial impact on individuals and society, this research should include drug trials, medical devices, diagnostic tools, and both behavioral and lifestyle changes. [7] A potential ethical solution is the use of a supported decision-making model for persons with dementia, which would not only reduce barriers to research participation but also promote individual autonomy.

While dementia is progressive, it is also characterized by fluctuating cognition, which presents challenges in the assessment of decision-making capacity and, ultimately, informed consent. [8] Meaningful consent requires that the person providing it has the capacity to do so, yet these capacities may be reduced by the cognitive impairment and fluctuation associated with dementia. [9] Cognitive fluctuation means that decision-making capacity not only changes during different situations and over time but also may be time and task-specific. [10] The responsibility for ethical research combined with the fluctuating cognition associated with dementia necessitates the use of a supported decision-making and capacity assessment process that respects the autonomy of the participant, the uneven decline associated with the disease process, and responds to the urgent need for increased participation in studies.

I.     Research Participants and Barriers to Dementia Research

Increased investment in dementia research has increased the number of treatment, prevention, and care studies and has produced an urgent need to recruit and enroll participants in studies. [11] For example, Alzheimer’s clinical trials are seeking more than 270,000 participants, with only one in ten persons screened being eligible for participation. [12] Research participation poses challenges, with the top barriers being the participant (study partner) burden and lack of awareness and resources among primary care physicians. [13] Many studies require participation by those who can provide informed consent and adhere to study procedures. Yet many caregivers of the patient, such as a spouse or family member, are reluctant to participate in studies due to extensive time commitments and unwillingness to authorize extensive screening tests that may not help the participant and may even cause discomfort or harm. [14] Furthermore, research participation may have risks of drug side effects. Additionally, physician offices may not be equipped to perform dementia-related diagnostic assessments and screening and may be unaware of opportunities for research participation. [15]

Informed consent and the recruitment of persons with dementia for research is complex because of fluctuating and progressively diminishing capacity of persons with dementia. [16] The inability to make one type of decision does not mean that there is an overall lack of ability to make decisions. Persons with dementia, for instance, may not have the capacity to agree to a complex treatment program or surgery, but they may have the ability to decide to take a new medication or to get a flu shot. [17]

II.     Capacity Assessment and Supported Decision-making

Decision-making capacity varies along a continuum and is affected by factors such as mood and motivation, yet the research review and approval processes require a categorical, binary determination about a continuous phenomenon. [18] Decision-making capacity is not always linear and includes factors such as mood, trust, and timing. [19] Informed consent and the associated assessment of decision-making capacity for research is determined by the investigator where the exposure to the potential participant over time is intermittent and limited, and where the researcher's goal is generalizable knowledge rather than treatment of the patient. This responsibility means that Therefore, while the principal investigator should have the most comprehensive knowledge about the potential risks and harms of any drugs or procedures being performed as part of the research, the principle investigator might have limited knowledge of potential participant values, preferences, and goals, and how the participant might view risks and harms. [20] Current literature demonstrates that while researchers are willing to support the decision of persons with dementia to participate or not, researchers are not equipped to assist in decision assistance and concrete decision support measures. [21] Further, decision assistance by the researcher may not be appropriate and could create a conflict of interest.

Persons with dementia should participate in decision-making about research participation, although they may lack decisional capacity when it comes to other decisions, including other healthcare decisions, and they may need support in making those decisions. If they understand the risks and the responsibilities of the research study, then they should be able to decide, even if a surrogate decision-maker has been identified. Surrogate decision-makers can fail to incorporate the nuanced context related to fluctuating capacity. Clinicians, surrogates, or other legally authorized representatives are oftentimes “gatekeepers” to potential research participants and may not make a decision that reflects what the patient would want. [22] Institutional review boards provide inadequate protection from misaligned decisions by surrogates because they also lack knowledge of the participant’s current values and preferences. [23] Due to the slow, progressive nature of dementia and the need to assess decision-making capacity for medical treatments early in the disease process, the default position may be overreliance on surrogate decision-making throughout the disease process for all decisions, even when the individual has some capacity and desire to make decisions autonomously. [24]

Capacity assessment is not an all-or-nothing proposition, and supported decision-making could enable persons with dementia to retain their ability to make autonomous choices. [25] Supported decision-making is a structured yet flexible process that fosters independence. As of 2024, 18 states plus the District of Columbia have passed supported decision-making laws. [26] Trusted advisors, called supporters, often selected by the individual, help the person understand, consider, and communicate decisions about areas where decision-making assistance may be needed, such as research participation. [27] Supporters, for example, would gather relevant information, including from the researcher and care provider, and provide information to the potential participants, enabling them to make their own decisions. The research participants would make decisions about when, where, and how capacity tests would be performed in addition to decisions about their medical care and research participation. Ideally, the selected test would be relevant to the risk of the intervention, decisional complexity, and consequences of the intervention and should be performed under optimal circumstances and conditions. [28] Supported decision-making helps fulfill the researcher’s obligation to assure adequate consent with a process that promotes autonomous participant decision-making rather than defaulting to a proxy or surrogate.

This collaboration between supporters and research participants should enhance the participant’s understanding of the risks and benefits of the research. Working together, clinicians, researchers, research participants, and relatives can mitigate challenges such as stakeholder biases, role confusion, and paternalistic behaviors. [29] An estimated 75 percent of caregiving for a patient with dementia is provided informally by friends and family. [30] This already existing informal network provides the foundation for a more structured, supported decision-making model that recognizes the strengths and capacities of various stakeholders and trusted advisors, with an aim to promote participant autonomy. These trusted advisors should know the individual’s values and goals and should assist the potential participant to express, not construct, their decisions.

Structured, supported decision-making with trusted advisors can be implemented on a case-by-case basis for individuals determined to have dynamic functional impairments. Implementation begins with the identification of the areas of assistance needed specific to the research study under consideration. Next, the persons who could serve as supporters should be identified. The individual should discuss the role with each potential supporter and any agreement should be documented. [31]

Supporters are selected by the beneficiary and are usually friends, family members, or experts who know and respect the individual’s will and preferences. The role of the supporter is to provide information to the individual so that the individual can decide. For example, if the research is social or behavioral in nature, and involves physical activity or interaction with other individuals, a friend who has knowledge of the individual’s daily activities could provide guidance as to an optimal time of day for participation. If the research involves medical testing, a family member could gather and present pros and cons of the procedure to the individual. Most importantly, supporters are people who know and respect the values of the potential participant and commit to assisting the individual in making their own decision.

A supported decision-making model will not only increase much-needed research participation but will also promote the autonomous decision-making of the participant. This model for research participation decision-making shifts the process from a traditional assessment of decisional capacity to a study-specific assessment that engages trusted stakeholders earlier and throughout the participation period and assesses capacity with a relevant task at an optimal time.

III.     Counterarguments to Supported Decision-making

Despite its benefits, supported decision-making has its limits and its risks. First, while dementia is characterized by fluctuating capacity, dementia is progressive and may require other surrogate approaches to decision-making, especially in the late stages of the disease. Surrogate or proxy decision-making may be appropriate for persons who consistently lack capacity, and the appropriateness of supported decision-making for persons with fluctuating capacity must be regularly evaluated and modified as needed. Second, no systematic method for determining whether a supporter has offered non-biased or non-controlling advice to the individual or if the individual’s decision has been properly represented or communicated has been identified. These challenges are not unique to supported decision-making, however. For example, surrogates may not easily identify or prioritize the relevant values associated with a particular decision, such as quality versus quantity of life. Further, a surrogate may make decisions based on personal desire for patient survival. Frameworks for value-based decision-making have been developed to support surrogates and to manage biases. [32] These frameworks could serve as a model for trusted stakeholders to adopt as part of the supported decision-making model. Third, the processes and roles of the stakeholders remain somewhat vague. The determination of which supporter is assigned to which decision or topic can be complex and requires good collaboration and communication among supporters and researchers. Through a supported decision-making model, an opportunity exists to blend the skills, expertise, and knowledge of all parties toward the benefit of appropriate research along with an effort to reinforce, rather than override, individual autonomy.       

IV.     Counterarguments to Encouraging Research Participation

There is a growing need to include persons with dementia in research. At the same time, many people may believe that research on individuals with diminished decisional capacity can place this vulnerable population at risk of physical, social, and psychological harm. [33] Further, this research may lead to drugs for future patients rather than the research subjects, many of whom would be nearing the end of life. Research undertaken with any vulnerable population raises concerns about how human dignity is both promoted and protected. However, failure to include this population in appropriate research can also contribute to the harm of individuals by slowing the development of evidence-based interventions. [34] Representation of the interests of individuals with dementia, along with the protection of their rights, is paramount when ensuring research is ethical. Researchers, institutional review boards, and individual decision-makers must adhere to ethical research practices. Rather than posing unacceptable risks to research participants, low-risk research performed ethically could benefit patients by allowing them to contribute to solutions. While research is generally for the good of others or society, some research would increase the possibility of new treatments during the research subject’s lifetime.

Research to prevent, diagnose, and cure dementia remains a national priority due to both the human and societal impact of dementia as well as the direct and indirect costs associated with dementia care. Research funding toward these ends continues to increase at a rate that exceeds available participants. [35] Research participation is always a choice. Informed consent is the gold standard by which researchers protect participant autonomy and prevent coercion and biases so that the potential participant can make an informed choice. The progressive and fluctuating capacity associated with dementia poses significant and unique challenges to informed consent and associated decisional capacity assessment. A principal investigator’s determination that a research protocol is minimal risk increases the likelihood that the research can ethically proceed, yet that determination has risks and challenges.

The fluctuating and, at times, impaired decisional capacity of persons with dementia makes recruiting participants difficult. [36] Different circumstances or conditions may demand different functional abilities—different tests of capacity based on risk. [37] Promoting autonomous decision-making in participants with impaired capacity does not necessarily require an alternate decision-maker but a supported decision-making structure that can adapt to the fluctuating capacity and risk of the decision.

A supported decision-making model that honors professional obligations and responsibilities, and brings together researchers, clinicians, caregivers, family, and friends in response to the fluctuating capacity of the potential participant is one way to increase research participation while respecting individual autonomy. The goal is to prioritize improved, autonomous decision-making for as long as possible so that persons with diminished decisional capacity can participate in dementia research—the right research at the right time with the right participant.

[1] WHO. (2024). World Health Organization . https://www.who.int/news-room/fact-sheets/detail/dementia#:~:text=Key%20facts,nearly%2010%20million%20new%20cases.

[2] Association, A. s. (2024). Alzheimer's Association . https://www.alz.org/alzheimers-dementia/facts-figures

[3] NIH. (2022). National Institutes of Health, National Institute on Aging . Department of Health and Human Services. https://www.nia.nih.gov/research/blog/2022/07/looking-forward-nihs-alzheimers-disease-and-related-dementias-fy-2024-bypass#:~:text=For%20FY%202024%2C%20NIH%20estimates,dementias%20research%20totaling%20%243.87%20billion.

[4] Lepore, M. S., Sari B.;Wiener, Joshua M.;Gould, Elizabeth (2017). Challenges in Involving People with Dementia as Study Participants in Research on Care and Services . https://aspe.hhs.gov/reports/challenges-involving-people-dementia-study-participants-research-care-services-0

[5] Cohen-Mansfield, J. (2019). Who is informed and who uninformed? Addressing the legal barriers to progress in dementia research and care. Isr J Health Policy Res , 8 (1), 17. https://doi.org/10.1186/s13584-018-0279-z

[6] NIA. (2020). The Urgent Need for Increased and Diverse Participation in Studies . United States Department of Health and Human Services Retrieved from https://www.nia.nih.gov/report-2019-2020-scientific-advances-prevention-treatment-and-care-dementia/urgent-need-increased

[8] Trachsel, M., Hermann, H., & Biller-Andorno, N. (2015). Cognitive fluctuations as a challenge for the assessment of decision-making capacity in patients with dementia. Am J Alzheimers Dis Other Demen , 30 (4), 360-363. https://doi.org/10.1177/1533317514539377

[9] Dunn, L. B., Nowrangi, M. A., Palmer, B. W., Jeste, D. V., & Saks, E. R. (2006). Assessing decisional capacity for clinical research or treatment: a review of instruments. Am J Psychiatry , 163 (8), 1323-1334. https://doi.org/10.1176/ajp.2006.163.8.1323

[10] Trachsel, M., Hermann, H., & Biller-Andorno, N. (2015). Cognitive fluctuations as a challenge for the assessment of decision-making capacity in patients with dementia. Am J Alzheimers Dis Other Demen , 30 (4), 360-363. https://doi.org/10.1177/1533317514539377

[11] NIA. (2020). The Urgent Need for Increased and Diverse Participation in Studies . United States Department of Health and Human Services Retrieved from https://www.nia.nih.gov/report-2019-2020-scientific-advances-prevention-treatment-and-care-dementia/urgent-need-increased

[12] NIA. (2018). Together We Make the Difference: National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research United States Government: United States Department of Health and Human Services Retrieved from https://www.nia.nih.gov/sites/default/files/2018-10/alzheimers-disease-recruitment-strategy-final.pdf

[16] Trachsel, M., Hermann, H., & Biller-Andorno, N. (2015). Cognitive fluctuations as a challenge for the assessment of decision-making capacity in patients with dementia. Am J Alzheimers Dis Other Demen , 30 (4), 360-363. https://doi.org/10.1177/1533317514539377

[17] Barstow, C., Shahan, B., & Roberts, M. (2018). Evaluating Medical Decision-Making Capacity in Practice. Am Fam Physician , 98 (1), 40-46.

[18] Rosenstein, D. L. M., Franklin G. (2008). Research Involving Those at Risk for Impaired Decision-Making Capacity. In The Oxford Textbook of Clinical Research Ethics (pp. 437-445). Oxford University Press.

[20] NIH. (2023). Office of Human Subjects Research Protections . US Government Office of Intramural Research. https://irbo.nih.gov/confluence/display/ohsrp/Researchers

[21] Wied, T. S., Poth, A., Pantel, J., Oswald, F., & Haberstroh, J. (2021). How do dementia researchers view support tools for informed consent procedures of persons with dementia? Z Gerontol Geriatr , 54 (7), 667-675. https://doi.org/10.1007/s00391-020-01779-2 (Wie bewerten Demenzforscher:innen Entscheidungsassistenz für die informierte Einwilligung zur Forschungsteilnahme von Menschen mit Demenz?)

[22] Lepore, M. S., Sari B.;Wiener, Joshua M.;Gould, Elizabeth (2017). Challenges in Involving People with Dementia as Study Participants in Research on Care and Services . https://aspe.hhs.gov/reports/challenges-involving-people-dementia-study-participants-research-care-services-0

[23] Harrison, R. R. (2023). Legally Effective but Ethically Inadequate: Institutional Review Board Policies for Consent from Legally Authorized Representatives. Ethics Hum Res , 45 (2), 14-25. https://doi.org/10.1002/eahr.500158

[24] Wilkins, J. M. (2018). Narrative Interest Standard: A Novel Approach to Surrogate Decision-Making for People With Dementia. Gerontologist , 58 (6), 1016-1020. https://doi.org/10.1093/geront/gnx107

[25] Mezey, M., Teresi, J., Ramsey, G., Mitty, E., & Bobrowitz, T. (2000). Decision-making capacity to execute a health care proxy: development and testing of guidelines. J Am Geriatr Soc , 48 (2), 179-187. https://doi.org/10.1111/j.1532-5415.2000.tb03909.x ; Representation, C. f. P. (2024). Supported Decision-Making . https://supporteddecisions.org/about-supported-decision-making/

[26] Representation, C. f. P. (2024). Supported Decision-Making . https://supporteddecisions.org/about-supported-decision-making/

[28] Lahey, T., & Elwyn, G. (2020). Sliding-Scale Shared Decision Making for Patients With Reduced Capacity. AMA J Ethics , 22 (5), E358-364. https://doi.org/10.1001/amajethics.2020.358

[30] Wong, W. (2020). Economic burden of Alzheimer disease and managed care considerations. Am J Manag Care , 26 (8 Suppl), S177-s183. https://doi.org/10.37765/ajmc.2020.88482

[31] Peterson, A., Karlawish, J., & Largent, E. (2021). Supported Decision Making With People at the Margins of Autonomy. Am J Bioeth , 21 (11), 4-18. https://doi.org/10.1080/15265161.2020.1863507  

[32] Scheunemann, L. P., Arnold, R. M., & White, D. B. (2012). The facilitated values history: helping surrogates make authentic decisions for incapacitated patients with advanced illness. Am J Respir Crit Care Med , 186 (6), 480-486. https://doi.org/10.1164/rccm.201204-0710CP

[33] West, E., Stuckelberger, A., Pautex, S., Staaks, J., & Gysels, M. (2017). Operationalising ethical challenges in dementia research-a systematic review of current evidence. Age Ageing , 46 (4), 678-687. https://doi.org/10.1093/ageing/afw250

[35] NIA. (2018). Together We Make the Difference: National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research United States Government: United States Department of Health and Human Services Retrieved from https://www.nia.nih.gov/sites/default/files/2018-10/alzheimers-disease-recruitment-strategy-final.pdf

[36] Lepore, M. S., Sari B.;Wiener, Joshua M.;Gould, Elizabeth (2017). Challenges in Involving People with Dementia as Study Participants in Research on Care and Services . https://aspe.hhs.gov/reports/challenges-involving-people-dementia-study-participants-research-care-services-0

[37] Dunn, L. B., Nowrangi, M. A., Palmer, B. W., Jeste, D. V., & Saks, E. R. (2006). Assessing decisional capacity for clinical research or treatment: a review of instruments. Am J Psychiatry , 163 (8), 1323-1334. https://doi.org/10.1176/ajp.2006.163.8.1323

D. Bioethics, Loyola University Chicago, MA, Clinical Ethics, Georgetown University, MA, Theology, Aquinas Institute of Theology

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The health impacts of better access to axicabtagene ciloleucel: the case of spain.

Simple Summary

1. introduction, 2. materials and methods, 2.1. modelling approach, 2.2. population, 2.3. comparator, 2.4. clinical data, 2.5. utilities, 3.1. base case, 3.2. alternative scenario, 3.3. comparison between the base case and alternative scenario, 4. discussion, 5. conclusions, author contributions, institutional review board statement, informed consent statement, data availability statement, conflicts of interest.

• Morton, L.M.; Slager, S.L.; Cerhan, J.R.; Wang, S.S.; Vajdic, C.M.; Skibola, C.F.; Bracci, P.M.; de Sanjosé, S.; Smedby, K.E.; Chiu, B.C.; et al. Etiologic heterogeneity among non-Hodgkin lymphoma subtypes: The InterLymph Non-Hodgkin Lymphoma Subtypes Project. J. Natl. Cancer Inst. Monogr. 2014 , 2014 , 130–144. [ Google Scholar ] [ CrossRef ]
• World Health Organization (WHO). Global Cancer Observatory. Cancer Today. Estimated Number of New Cases in 2020. Available online: https://gco.iarc.fr/ (accessed on 3 October 2022).
• Tilly, H.; da Silva, M.G.; Vitolo, U.; Jack, A.; Meignan, M.; Lopez-Guillermo, A.; Walewski, J.; André, M.; Johnson, P.W.; Pfreundschuh, M.; et al. Diffuse large B-cell lymphoma (DLBCL): ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Ann. Oncol. 2015 , 26 , v116-25. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Ernst, M.; Oeser, A.; Besiroglu, B.; Caro-Valenzuela, J.; El Aziz, M.A.; Monsef, I.; Borchmann, P.; Estcourt, L.J.; Skoetz, N.; Goldkuhle, M. Chimeric antigen receptor (CAR) T-cell therapy for people with relapsed or refractory diffuse large B-cell lymphoma. Cochrane Database Syst. Rev. 2021 , 9 , CD013365. [ Google Scholar ] [ PubMed ]
• Bastos-Oreiro, M.; Muntanola, A.; Panizo, C.; Gonzalez-Barca, E.; de Villambrosia, S.G.; Cordoba, R.; López, J.L.B.; Gonzalez-Sierra, P.; Terol, M.J.; Gutierrez, A.; et al. RELINF: Prospective epidemiological registry of lymphoid neoplasms in Spain. A project from the GELTAMO group. Ann. Hematol. 2020 , 99 , 799–808. [ Google Scholar ] [ CrossRef ]
• Friedberg, J.W. Relapsed/refractory diffuse large B-cell lymphoma. Hematol. Am. Soc. Hematol. Educ. Program. 2011 , 2011 , 498–505. [ Google Scholar ] [ CrossRef ]
• Crump, M.; Neelapu, S.S.; Farooq, U.; Van Den Neste, E.; Kuruvilla, J.; Westin, J.; Link, B.K.; Hay, A.; Cerhan, J.R.; Zhu, L.; et al. Outcomes in refractory diffuse large B-cell lymphoma: Results from the international SCHOLAR-1 study. Blood 2017 , 130 , 1800–1808. [ Google Scholar ] [ CrossRef ]
• Mounier, N.; El Gnaoui, T.; Tilly, H.; Canioni, D.; Sebban, C.; Casasnovas, R.O.; Delarue, R.; Sonet, A.; Beaussart, P.; Petrella, T.; et al. Rituximab plus gemcitabine and oxaliplatin in patients with refractory/relapsed diffuse large B-cell lymphoma who are not candidates for high-dose therapy. A phase II Lymphoma Study Association trial. Haematologica 2013 , 98 , 1726–1731. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Ohmachi, K.; Niitsu, N.; Uchida, T.; Kim, S.J.; Ando, K.; Takahashi, N.; Takahashi, N.; Uike, N.; Eom, H.S.; Chae, Y.S.; et al. Multicenter phase II study of bendamustine plus rituximab in patients with relapsed or refractory diffuse large B-cell lymphoma. J. Clin. Oncol. 2013 , 31 , 2103–2109. [ Google Scholar ] [ CrossRef ]
• Czuczman, M.S.; Trněný, M.; Davies, A.; Rule, S.; Linton, K.M.; Wagner-Johnston, N.; Gascoyne, R.D.; Slack, G.W.; Brousset, P.; Eberhard, D.A.; et al. A Phase 2/3 Multicenter, Randomized, Open-Label Study to Compare the Efficacy and Safety of Lenalidomide Versus Investigator’s Choice in Patients with Relapsed or Refractory Diffuse Large B-Cell Lymphoma. Clin. Cancer Res. 2017 , 23 , 4127–4137. [ Google Scholar ] [ CrossRef ]
• Ayers, E.C.; Margolis, D.; Landsburg, D.J. Real World Outcomes in Patients With Relapsed/Refractory Diffuse Large B-cell Lymphoma Receiving Palliative Intent Therapies. Clin. Lymphoma Myeloma Leuk. 2020 , 20 , 661–667. [ Google Scholar ] [ CrossRef ]
• Maude, S.L.; Laetsch, T.W.; Buechner, J.; Rives, S.; Boyer, M.; Bittencourt, H.; Bader, P.; Verneris, M.R.; Stefanski, H.E.; Myers, G.D.; et al. Tisagenlecleucel in Children and Young Adults with B-Cell Lymphoblastic Leukemia. N. Engl. J. Med. 2018 , 378 , 439–448. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Neelapu, S.S.; Locke, F.L.; Bartlett, N.L.; Lekakis, L.J.; Miklos, D.B.; Jacobson, C.A.; Braunschweig, I.; Oluwole, O.O.; Siddiqi, T.; Lin, Y.; et al. Axicabtagene Ciloleucel CAR T-Cell Therapy in Refractory Large B-Cell Lymphoma. N. Engl. J. Med. 2017 , 377 , 2531–2544. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Schuster, S.J.; Bishop, M.R.; Tam, C.S.; Waller, E.K.; Borchmann, P.; McGuirk, J.P.; Jäger, U.; Jaglowski, S.; Andreadis, C.; Westin, J.R.; et al. JULIET Investigators. Tisagenlecleucel in Adult Relapsed or Refractory Diffuse Large B-Cell Lymphoma. N. Engl. J. Med. 2019 , 380 , 45–56. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• European Medicines Agency. Product Information: Yescarta®. Available online: https://www.ema.europa.eu/en/medicines/human/EPAR/yescarta (accessed on 9 May 2022).
• Neelapu, S.S.; Locke, F.L.; Bartlett, N.L.; Lekakis, L.J.; Reagan, P.M.; Miklos, D.B.; Jacobson, C.A.; Braunschweig, I.; Oluwole, O.O.; Siddiqi, T.; et al. Comparison of 2-year outcomes with CAR T cells (ZUMA-1) vs salvage chemotherapy in refractory large B-cell lymphoma. Blood Adv. 2021 , 5 , 4149–4155. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Neelapu, S.S.; Jacobson, C.A.; Ghobadi, A.; Miklos, D.B.; Lekakis, L.J.; Oluwole, O.O.; Lin, Y.; Braunschweig, I.; Hill, B.T.; Timmerman, J.M.; et al. Five-year follow-up of ZUMA-1 supports the curative potential of axicabtagene ciloleucel in refractory large B-cell lymphoma. Blood 2023 , 141 , 2307–2315. [ Google Scholar ] [ PubMed ]
• Sierra, J.; Briones, J.; Calleja, M.A.; Camacho, C.; Casado, M.A.; Presa, M.; Díez, J.L.; Solano, C.; Moraleda, J.M.; Caballero, D. Axicabtagene Ciloleucel for the Management of Patients with Diffuse Large B-Cell Lymphoma and Primary Mediastinal Large B-cell Lymphoma: An Economic Evaluation for Spain. Abstract Book: 25th Congress of the European Hematology Association Virtual Edition. HemaSphere 2020 , 4 , 1–1168. [ Google Scholar ] [ CrossRef ]
• Bastos-Oreiro, M.; de Las Heras, A.; Presa, M.; Casado, M.A.; Pardo, C.; Martín-Escudero, V.; Sureda, A. Cost-Effectiveness Analysis of Axicabtagene Ciloleucel vs. Tisagenlecleucel for the Management of Relapsed/Refractory Diffuse Large B-Cell Lymphoma in Spain. Cancers 2022 , 14 , 538. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Vallejo-Torres, L.; García-Lorenzo, B.; Serrano-Aguilar, P. Estimating a cost-effectiveness threshold for the Spanish NHS. Health Econ. 2018 , 27 , 746–761. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Sacristán, J.A.; Oliva, J.; Campillo-Artero, C.; Puig-Junoy, J.; Pinto-Prades, J.L.; Dilla, T.; Rubio-Terrés, C.; Ortún, V. ¿Qué es una intervención sanitaria eficiente en España en 2020? [What is an efficient health intervention in Spain in 2020?]. Gac Sanit 2020 , 34 , 189–193. [ Google Scholar ] [ CrossRef ]
• Ministerio de Sanidad, Consumo y Bienestar Social [Ministry of Health]. Plan to Tackle Advanced Therapies in the National Health System: CAR (Chimeric Antigen Receptor) Medicines. Available online: https://www.sanidad.gob.es/profesionales/farmacia/Terapias_Avanzadas.htm (accessed on 1 August 2022).
• Lin, J.K.; Muffly, L.S.; Spinner, M.A.; Barnes, J.I.; Owens, D.K.; Goldhaber-Fiebert, J.D. Cost effectiveness of chimeric antigen receptor T-cell therapy in multiply relapsed or refractory adult large B-cell lymphoma. J. Clin. Oncol. 2019 , 37 , 2105–2119. [ Google Scholar ] [ CrossRef ]
• Roth, J.A.; Sullivan, S.D.; Lin, V.W.; Bansal, A.; Purdum, A.G.; Navale, L.; Cheng, P.; Ramsey, S.D. Cost-effectiveness of axicabtagene ciloleucel for adult patients with relapsed or refractory large B-cell lymphoma in the United States. J. Med. Econ. 2018 , 21 , 1238–1245. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Whittington, M.D.; McQueen, R.B.; Ollendorf, D.A.; Kumar, V.M.; Chapman, R.H.; Tice, J.A.; Pearson, S.D.; Campbell, J.D. Long-term survival and cost-effectiveness associated with axicabtagene ciloleucel vs chemotherapy for treatment of B-Cell lymphoma. JAMA Netw. Open. 2019 , 2 , e190035. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• National Institute for Health and Care Excellence. Axicabtagene Ciloleucel for Treating Diffuse Large B-Cell Lymphoma and Primary Mediastinal Large B-Cell Lymphoma after 2 or More Systemic Therapies. Technology Appraisal Guidance [TA559]. Available online: https://www.nice.org.uk/guidance/ta559 (accessed on 14 June 2022).
• INE. Tablas de Mortalidad por año, Sexo, edad y Funciones. Available online: https://www.ine.es/jaxiT3/Tabla.htm?t=27153 (accessed on 10 May 2022).
• Sonnenberg, F.A.; Beck, J.R. Markov models in medical decision making: A practical guide. Med. Decis. Mak. 1993 , 13 , 322–338. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Group for Innovation, Assessment, Standardization and Research in the Selection of Drugs of the Spanish Society of Hospital Pharmacy (SEFH). Informe GENESIS-SEFH: Axicabtagén Ciloleucel en Linfoma Difuso de Células B Grandes Refractario o en Recaída. Available online: https://gruposdetrabajo.sefh.es/genesis/genesis/Enlaces/InformesHosp_abc.htm?ml=1#A (accessed on 13 June 2022).
• Jacobson, C.; Locke, F.L.; Ghobadi, A.; Miklos, D.B.; Lekakis, L.J.; Oluwole, O.O.; Lin, Y.; Hill, B.T.; Timmerman, J.M.; Deol, A.; et al. Long-Term (≥4 Year and ≥5 Year) Overall Survival (OS) By 12- and 24-Month Event-Free Survival (EFS): An Updated Analysis of ZUMA-1, the Pivotal Study of Axicabtagene Ciloleucel (Axi-Cel) in Patients (Pts) with Refractory Large B-Cell Lymphoma (LBCL). Blood 2021 , 138 , 1764. [ Google Scholar ] [ CrossRef ]
• European Medicines Agency. Assessment Report of Yescarta®. Available online: https://www.ema.europa.eu/en/documents/assessment-report/yescarta-epar-public-assessment-report_en.pdf (accessed on 8 March 2024).
• Food & Drug Administration. Cellular & Gene Therapy Products: Yescarta®. Available online: https://www.fda.gov/vaccines-blood-biologics/cellular-gene-therapy-products/yescarta (accessed on 8 March 2024).
• Faria, R.; Alava, M.H.; Manca, A.; Wailoo, A.J. NICE DSU Technical Support Document 17: The Use of Observational Data to Inform Estimates of Treatment Effectiveness in Technology Appraisal: Methods for Comparative Individual Patient Data. Available online: http://www.nicedsu.org.uk/TSD17%20-%20DSU%20Observational%20data%20FINAL.pdf (accessed on 10 May 2022).
• Lin, V.; Jiang, Y.; Chuang, L. Health utilities for patients with relapsed or refractory large B-cell lymphoma: Ad hoc analysis from an axicabtagene ciloleucel safety management study. In Proceedings of the 44th Annual Meeting of the European Society for Blood and Marrow Transplantation, Lisbon, Portugal, 20 March 2018. [ Google Scholar ]
• Chen, Q.; Staton, A.D.; Ayer, T.; Goldstein, D.A.; Koff, J.L.; Flowers, C.R. Exploring the potential cost-effectiveness of precision medicine treatment strategies for diffuse large B-cell lymphoma. Leuk. Lymphoma 2018 , 59 , 1700–1709. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Lin, V.W.; Blaylock, B.; Epstein, J.; Purdum, A. Systematic literature review of health-related quality of life among aggressive non-Hodgkin lymphoma survivors. Curr. Med. Res. Opin. 2018 , 34 , 1529–1535. [ Google Scholar ] [ CrossRef ]
• Ministry of Health, Social Services and Equality. Annual Report of the National Health System of Spain, 2011/2012. Available online: https://www.sanidad.gob.es/estadEstudios/estadisticas/encuestaNacional/encuesta2011.htm (accessed on 13 June 2022).
• Canales Albendea, M.Á.; Canonico, P.L.; Cartron, G.; Deiters, B.; Jommi, C.; Marks, R.; Rioufol, C.; Sancho Cia, J.M.; Santoro, A.; Wagner-Drouet, E.M. Comparative analysis of CAR T-cell therapy access for DLBCL patients: Associated challenges and solutions in the four largest EU countries. Front. Med. 2023 , 10 , 1128295. [ Google Scholar ] [ CrossRef ]
• Corbett, M.; Duarte, A.; Melton, H.; Walker, S.; Wright, K.; Eastwood, A.; Palmer, S. Axicabtagene ciloleucel for Treating Diffuse Large B-Cell Lymphoma, Mediastinal B-Cell Lymphoma and Follicular Lymphoma: A Single Technology Appraisal ; CRD and CHE, University of York, Technology Assessment Group: York, UK, 2018. [ Google Scholar ]

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Córdoba, R.; López-Corral, L.; Presa, M.; Martín-Escudero, V.; Vadgama, S.; Casado, M.Á.; Pardo, C. The Health Impacts of Better Access to Axicabtagene Ciloleucel: The Case of Spain. Cancers 2024 , 16 , 2712. https://doi.org/10.3390/cancers16152712

Córdoba R, López-Corral L, Presa M, Martín-Escudero V, Vadgama S, Casado MÁ, Pardo C. The Health Impacts of Better Access to Axicabtagene Ciloleucel: The Case of Spain. Cancers . 2024; 16(15):2712. https://doi.org/10.3390/cancers16152712

Córdoba, Raúl, Lucía López-Corral, María Presa, Victoria Martín-Escudero, Sachin Vadgama, Miguel Ángel Casado, and Carlos Pardo. 2024. "The Health Impacts of Better Access to Axicabtagene Ciloleucel: The Case of Spain" Cancers 16, no. 15: 2712. https://doi.org/10.3390/cancers16152712

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