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Personal autonomy is widely valued. Recognition of its vulnerability in health care contexts led to the inclusion of respect for autonomy as a key concern in biomedical ethics. The principle of respect for autonomy is usually associated with allowing or enabling patients to make their own decisions about which health care interventions they will or will not receive. In this paper, we suggest that a strong focus on decision situations is problematic, especially when combined with a tendency to stress the importance of patients’ independence in choosing. It distracts attention from other important aspects of and challenges to autonomy in health care. Relational understandings of autonomy attempt to explain both the positive and negative implications of social relationships for individuals’ autonomy. They suggest that many health care practices can affect autonomy by virtue of their effects not only on patients’ treatment preferences and choices, but also on their self-identities, self-evaluations and capabilities for autonomy. Relational understandings de-emphasise independence and facilitate well-nuanced distinctions between forms of clinical communication that support and that undermine patients’ autonomy. These understandings support recognition of the value of good patient-professional relationships and can enrich the specification of the principle of respect for autonomy.

Background Low literacy is a significant problem across the developed world. A considerable body of research has reported associations between low literacy and less appropriate access to healthcare services, lower likelihood of self-managing health conditions well, and poorer health outcomes. There is a need to explore the previously neglected perspectives of people with low literacy to help explain how low literacy can lead to poor health, and to consider how to improve the ability of health services to meet their needs. Methods Two stage qualitative study. In-depth individual interviews followed by focus groups to confirm analysis and develop suggestions for service improvements. A purposive sample of 29 adults with English as their first language who had sought help with literacy was recruited from an Adult Learning Centre in the UK. Results Over and above the well-documented difficulties that people with low literacy can have with the written information and complex explanations and instructions they encounter as they use health services, the stigma of low literacy had significant negative implications for participants’ spoken interactions with healthcare professionals. Participants described various difficulties in consultations, some of which had impacted negatively on their broader healthcare experiences and abilities to self-manage health conditions. Some communication difficulties were apparently perpetuated or exacerbated because participants limited their conversational engagement and used a variety of strategies to cover up their low literacy that could send misleading signals to health professionals. Participants’ biographical narratives revealed that the ways in which they managed their low literacy in healthcare settings, as in other social contexts, stemmed from highly negative experiences with literacy-related stigma, usually from their schooldays onwards. They also suggest that literacy-related stigma can significantly undermine mental wellbeing by prompting self-exclusion from social participation and generating a persistent anxiety about revealing literacy difficulties. Conclusion Low-literacy-related stigma can seriously impair people’s spoken interactions with health professionals and their potential to benefit from health services. As policies increasingly emphasise the need for patients’ participation, services need to simplify the literacy requirements of service use and health professionals need to offer non-judgemental (universal) literacy-sensitive support to promote positive healthcare experiences and outcomes.

There are various reasons why efforts to promote “support for self-management” have rarely delivered the kinds of sustainable improvements in healthcare experiences, health and wellbeing that policy leaders internationally have hoped for. This paper explains how the basis of failure is in some respects built into the ideas that underpin many of these efforts. When (the promotion of) support for self-management is narrowly oriented towards educating and motivating patients to adopt the behaviours recommended for disease control, it implicitly reflects and perpetuates limited and somewhat instrumental views of patients. It tends to: restrict the pursuit of respectful and enabling ‘partnership working’; run the risk of undermining patients’ self-evaluative attitudes (and then of failing to notice that as harmful); limit recognition of the supportive value of clinician-patient relationships; and obscure the practical and ethical tensions that clinicians face in the delivery of support for self-management. We suggest that a focus on enabling people to live (and die) well with their long-term conditions is a promising starting point for a more adequate conception of support for self-management. We then outline the theoretical advantages that a capabilities approach to thinking about living well can bring to the development of an account of support for self-management, explaining, for example, how it can accommodate the range of what matters to people (both generally and more specifically) for living well, help keep the importance of disease control in perspective, recognize social influences on people’s values, behaviours and wellbeing, and illuminate more of the rich potential and practical and ethical challenges of supporting self-management in practice.

Background Much of the evidence of an association between low functional or health literacy and poor health comes from studies that include people who have various cognitive difficulties or who do not speak the dominant language of their society. Low functional or health literacy among these people is likely to be evident in spoken conversation. However, many other people can talk readily about health and other issues but have problems using written information. Consequently, their difficulties may be far less evident to healthcare professionals, creating a 'hidden population' whose functional or health literacy problems have different implications because they are less likely to be recognised and addressed. We aimed to review published research to investigate relationships between low functional or health literacy and health in working age adults who can converse in the dominant language but have difficulty with written language. Methods We searched reviews and electronic databases for studies that examined health-related outcomes among the population of interest. We systematically extracted data relating to relationships between low functional or health literacy and both health status and various possible mediators or moderators of the implications of literacy for health. We developed a narrative review. Results Twenty-four studies met our inclusion criteria. Lower functional or health literacy in this population was found to be associated with worse health status. This may be mediated by difficulties accessing healthcare, and poorer self-management of health problems. It is currently unclear whether, how or to what extent these difficulties are mediated by poorer knowledge stemming from low functional or health literacy. The variation in functional or health literacy measures and comparisons make it difficult to compare study findings and to establish the implications of different literacy issues for health outcomes. Conclusions There is evidence in the literature that low functional or health literacy is associated with poor health in the 'hidden population' of adults whose literacy difficulties may not be evident to health care providers. Further research is needed to help understand the particular disadvantages faced by this population and to establish appropriate responses.

Prostate-specific antigen (PSA) testing for prostate cancer is controversial. There are unresolved tensions and disagreements amongst experts, and clinical guidelines conflict. This both reflects and generates significant uncertainty about the appropriateness of screening. Little is known about general practitioners' (GPs') perspectives and experiences in relation to PSA testing of asymptomatic men. In this paper we asked the following questions: (1) What are the primary sources of uncertainty as described by GPs in the context of PSA testing? (2) How do GPs experience and respond to different sources of uncertainty? This was a qualitative study that explored general practitioners' current approaches to, and reasoning about, PSA testing of asymptomatic men. We draw on accounts generated from interviews with 69 general practitioners located in Australia (n = 40) and the United Kingdom (n = 29). The interviews were conducted in 2013-2014. Data were analysed using grounded theory methods. Uncertainty in PSA testing was identified as a core issue. Australian GPs reported experiencing substantially more uncertainty than UK GPs. This seemed partly explainable by notable differences in conditions of practice between the two countries. Using Han et al's taxonomy of uncertainty as an initial framework, we first outline the different sources of uncertainty GPs (mostly Australian) described encountering in relation to prostate cancer screening and what the uncertainty was about. We then suggest an extension to Han et al's taxonomy based on our analysis of data relating to the varied ways that GPs manage uncertainties in the context of PSA testing. We outline three broad strategies: (1) taking charge of uncertainty; (2) engaging others in managing uncertainty; and (3) transferring the responsibility for reducing or managing some uncertainties to other parties. Our analysis suggests some GPs experienced uncertainties associated with ambiguous guidance and the complexities of their situation as professionals with responsibilities to patients as considerably burdensome. This raises important questions about responsibility for uncertainty. In Australia in particular they feel insufficiently supported by the health care system to practice in ways that are recognisably consistent with 'evidence based' professional standards and appropriate for patients. More work is needed to clarify under what circumstances and how uncertainty should be communicated. Closer attention to different types and aspects of the uncertainty construct could be useful.

Background Randomised controlled trials of healthcare interventions depend on the participation of volunteers who might not derive any personal health benefit from their participation. The idea that altruistic-type motives are important for trial participation is understandably widespread, but recent studies suggest considerations of personal benefit can influence participation decisions in various ways. Methods Non-participant observation of recruitment consultations (n = 25) and in-depth interviews with people invited to participate in the UK REFLUX trial (n = 13). Results Willingness to help others and to contribute towards furthering medical knowledge featured strongly among the reasons people gave for being interested in participating in the trial. But decisions to attend recruitment appointments and take part were not based solely on consideration of others. Rather, they were presented as conditional on individuals additionally perceiving some benefit (and no significant disadvantage) for themselves. Potential for personal benefit or disadvantage could be seen in both the interventions being evaluated and trial processes. Conclusions The term 'conditional altruism' concisely describes the willingness to help others that may initially incline people to participate in a trial, but that is unlikely to lead to trial participation in practice unless people also recognise that participation will benefit them personally. Recognition of conditional altruism has implications for planning trial recruitment communications to promote informed and voluntary trial participation. Trial registration ISRCTN15517081

•First internationally agreed minimum set of outcomes deemed essential to be measured in all future studies evaluating interventions to improve decisions about participating in an randomized controlled trial.•Broad stakeholder involvement, including; potential trial participants (e.g., patients or others who could provide a lay perspective), trialists, research nurses, social scientists, clinicians, bioethicists, and research ethics committee members.•Represents outcomes that are of core importance to multiple stakeholders and, if adopted, will improve the relevance of future trials in this field. To develop a core outcome set for the evaluation of interventions that aim to improve how people make decisions about whether to participate in randomized controlled trials (of healthcare interventions), the ELICIT Study. International mixed-method study involving a systematic review of existing outcomes, semi-structured interviews, an online Delphi survey, and a face-to-face consensus meeting. The literature review and stakeholder interviews (n = 25) initially identified 1045 reported outcomes that were grouped into 40 individually distinct outcomes. These 40 outcomes were scored for importance in two rounds of an online Delphi survey (n = 79), with 18 people attending the consensus meeting. Consensus was reached on 12 core outcomes: therapeutic misconception; comfort with decision; authenticity of decision; communication about the trial; empowerment; sense of altruism; equipoise; knowledge; salience of questions; understanding, how helpful the process was for decision making; and trial attrition. The ELICIT core outcome set is the first internationally agreed minimum set of outcomes deemed essential to be measured in all future studies evaluating interventions to improve decisions about participating in an randomized controlled trial. Use of the ELICIT core set will ensure that results from these trials are comparable and relevant to all stakeholders. COMET database - http://www.comet-initiative.org/Studies/Details/595.

Background Personalised Care and Support Planning (PCSP) replaces conventional annual reviews for people with long-term conditions. It is designed to help healthcare professionals (HCPs) and patients engage in conversations as equals and collaboratively plan actions oriented to each patient’s priorities, alongside biomedical concerns. Little is known about how the shift to remote consulting initiated with COVID-19 restrictions has impacted PCSP. Aim To investigate HCPs’ experiences of conducting PCSP conversations remotely and consider implications for the fulfilment of PCSP ambitions as remote consulting continues beyond COVID-19 restrictions. Methods 19 semi-structured interviews with HCPs in England and Scotland; interpretive analysis. Results HCPs’ accounts made clear that COVID-19 restrictions impacted multiple aspects of PCSP delivery, not just the mode of conversation. Broader disruption to general practice systems for gathering and sharing information ahead of PCSP conversations, and moves to ‘wide window’ appointment times, made it harder for patients to be prepared for PCSP conversations. This constrained scope to achieve PCSP ambitions even with the best professional communication skills. Most remote PCSP conversations were conducted by telephone. In the absence of visual communication with patients, it was sometimes harder to achieve the ambitions of PCSP conversations, including to balance patient and professional agendas, fulfil key planning activities, and foster a relational ethos of equal, collaborative partnership. The challenges were particularly severe when working with new patients and people with complex clinical and social problems. Although options for telephone appointments now offer valued flexibility, sustained experience of struggling to achieve PCSP ambitions via remote consulting led some HCPs to lower their standards for judging a “good” PCSP conversation, and to diminished professional satisfaction. Conclusions There are significant challenges to fulfilling the ambitions of PCSP via telephone, especially when preparatory support is limited. This study provides grounds for scepticism about how compatible telephone appointments can be with this person-centred model of working, especially for people who are socially disadvantaged and live with complex health conditions. These threats to the provision of person-centred support for people with long-term conditions warrant careful attention going forward if the PCSP model and its benefits are to be sustained.

This paper analyses the ethics of routine measurement for healthcare improvement. Routine measurement is an increasingly central part of healthcare system design and is taken to be necessary for successful healthcare improvement efforts. It is widely recognised that the effectiveness of routine measurement in bringing about improvement is limited—it often produces only modest effects or fails to generate anticipated improvements at all. We seek to show that these concerns do not exhaust the ethics of routine measurement. Even if routine measurement does lead to healthcare improvements, it has associated ethical costs which are not necessarily justified by its benefits. We argue that the practice of routine measurement changes the function of the healthcare system, resulting in an unintended and ethically significant transformation of the sector. It is difficult to determine whether such changes are justified or offset by the benefits of routine measurement because there may be no shared understanding of what is ‘good’ in healthcare by which to compare the benefits of routine measurement with the goods that are precluded by it. We counsel that the practice of routine measurement should proceed with caution and should be recognised to be an ethically significant choice, rather than an inevitability.

Patient or public involvement (PPI) in health research is increasingly expected as a matter of policy. In theory, PPI can contribute both to the epistemic aims intrinsic to research (generating knowledge), and to extrinsically valued features of research such as social inclusion and transparency. In practice, the aims of PPI have not always been clear, although there has been a tendency to encourage the involvement of so-called ordinary people who are regarded as representative of an assumed patient perspective. In this paper we focus on the epistemic potential of PPI, using theoretical work in epistemology to develop a nuanced account of patients’ experiential knowledge and how this might contribute directly to conceptual development, hypothesis generation and data interpretation. We also consider how some features of health research pose barriers to this kind of epistemic contribution. Drawing on Miranda Fricker’s idea of testimonial injustice, we explore how disciplinary indicators of credibility in clinical and academic health research contexts might be wrongly applied to those involved in PPI, undermining their potential to contribute. Finally we argue for a range of strategies to maximize opportunities for patients to engage with research teams and make epistemologically significant contributions to research.