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1.  Doctors' perspectives on PSA testing illuminate established differences in prostate cancer screening rates between Australia and the UK: a qualitative study 
BMJ Open  2016;6(12):e011932.
To examine how general practitioners (GPs) in the UK and GPs in Australia explain their prostate-specific antigen (PSA) testing practices and to illuminate how these explanations are similar and how they are different.
A grounded theory study.
Primary care practices in Australia and the UK.
69 GPs in Australia (n=40) and the UK (n=29). We included GPs of varying ages, sex, clinical experience and patient populations. All GPs interested in participating in the study were included.
GPs' accounts revealed fundamental differences in whether and how prostate cancer screening occurred in their practice and in the broader context within which they operate. The history of prostate screening policy, organisational structures and funding models appeared to drive more prostate screening in Australia and less in the UK. In Australia, screening processes and decisions were mostly at the discretion of individual clinicians, and varied considerably, whereas the accounts of UK GPs clearly reflected a consistent, organisationally embedded approach based on local evidence-based recommendations to discourage screening.
The GP accounts suggested that healthcare systems, including historical and current organisational and funding structures and rules, collectively contribute to how and why clinicians use the PSA test and play a significant role in creating the mindlines that GPs employ in their clinic. Australia's recently released consensus guidelines may support more streamlined and consistent care. However, if GP mindlines and thus routine practice in Australia are to shift, to ultimately reduce unnecessary or harmful prostate screening, it is likely that other important drivers at all levels of the screening process will need to be addressed.
PMCID: PMC5168698  PMID: 27920082
prostate cancer screening; mindlines; prostate-specific antigen test; australia; united kingdom
2.  Can consumers learn to ask three questions to improve shared decision making? A feasibility study of the ASK (AskShareKnow) Patient–Clinician Communication Model® intervention in a primary health‐care setting 
To test the feasibility and assess the uptake and acceptability of implementing a consumer questions programme, AskShareKnow, to encourage consumers to use the questions ‘1. What are my options; 2. What are the possible benefits and harms of those options; 3. How likely are each of those benefits and harms to happen to me?’ These three questions have previously shown important effects in improving the quality of information provided during consultations and in facilitating patient involvement.
This single‐arm intervention study invited participants attending a reproductive and sexual health‐care clinic to view a 4‐min video‐clip in the waiting room. Participants completed three questionnaires: (T1) prior to viewing the intervention; (T2) immediately after their consultation; and (T3) two weeks later.
A total of 121 (78%) participants viewed the video‐clip before their consultation. Eighty‐four (69%) participants asked one or more questions, and 35 (29%) participants asked all three questions. For those making a decision, 55 (87%) participants asked one or more questions, while 27 (43%) participants asked all three questions. Eighty‐seven (72%) participants recommended the questions. After two weeks, 47 (49%) of the participants recalled the questions.
Enabling patients to view a short video‐clip before an appointment to improve information and involvement in health‐care consultations is feasible and led to a high uptake of question asking in consultations.
Practice Implications
This AskShareKnow programme is a simple and feasible method of training patients to use a brief consumer‐targeted intervention that has previously shown important effects in improving the quality of information provided during consultations and in facilitating patient involvement and use of evidence‐based questions.
PMCID: PMC5152736  PMID: 26364752
communication; consumer; patient empowerment; patient involvement; shared decision making
3.  General Practitioners’ Experiences of, and Responses to, Uncertainty in Prostate Cancer Screening: Insights from a Qualitative Study 
PLoS ONE  2016;11(4):e0153299.
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.
PMCID: PMC4839572  PMID: 27100402
4.  Vaginal birth after caesarean section: why is uptake so low? Insights from a meta-ethnographic synthesis of women's accounts of their birth choices 
BMJ Open  2016;6(1):e008881.
To identify what women report influences their preferred mode of birth after caesarean section.
Systematic review of qualitative literature using meta-ethnography.
Data sources
Medline, EMBASE, ASSIA, CINAHL and PsycINFO (1996 until April 2013; updated September 2015). Hand-searched journals, reference lists and abstract authors.
Study selection
Primary qualitative studies reporting women's accounts of what influenced their preferred mode of birth after caesarean section.
Data extraction and synthesis
Primary data (quotations from study participants) and authors’ interpretations of these were extracted, compared and contrasted between studies, and grouped into themes to support the development of a ‘line of argument’ synthesis.
20 papers reporting the views of 507 women from four countries were included. Distinctive clusters of influences were identified for each of three groups of women. Women who confidently sought vaginal birth after a caesarean section were typically driven by a long-standing anticipation of vaginal birth. Women who sought a repeat caesarean section were strongly influenced by distressing previous birth experiences, and at times, by encouragement from social contacts. Women who were more open to information and professional guidance had fewer strong preconceptions and concerns, and viewed a range of considerations as potentially important.
Women's attitudes towards birth after caesarean section appear to be shaped by distinct clusters of influences, suggesting that opportunities exist for clinicians to stratify and personalise decision support by addressing relevant ideas, concerns and experiences from the first caesarean section birth onwards.
PMCID: PMC4716170  PMID: 26747030
6.  Evaluation of interventions for informed consent for randomised controlled trials (ELICIT): protocol for a systematic review of the literature and identification of a core outcome set using a Delphi survey 
Trials  2015;16:484.
The process of obtaining informed consent for participation in randomised controlled trials (RCTs) was established as a mechanism to protect participants against undue harm from research and allow people to recognise any potential risks or benefits associated with the research. A number of interventions have been put forward to improve this process. Outcomes reported in trials of interventions to improve the informed consent process for decisions about trial participation tend to focus on the ‘understanding’ of trial information. However, the operationalization of understanding as a concept, the tools used to measure it and the timing of the measurements are heterogeneous. A lack of clarity exists regarding which outcomes matter (to whom) and why. This inconsistency between studies results in difficulties when making comparisons across studies as evidenced in two recent systematic reviews of informed consent interventions. As such, no optimal method for measuring the impact of these interventions aimed at improving informed consent for RCTs has been identified.
The project will adopt and adapt methodology previously developed and used in projects developing core outcome sets for assessment of clinical treatments. Specifically, the work will consist of three stages: 1) A systematic methodology review of existing outcome measures of trial informed consent interventions; 2) Interviews with key stakeholders to explore additional outcomes relevant for trial participation decisions; and 3) A Delphi study to refine the core outcome set for evaluation of trial informed consent interventions. All stages will include the stakeholders involved in the various aspects of RCT consent: users (that is, patients), developers (that is, trialists), deliverers (focusing on research nurses) and authorisers (that is, ethics committees). A final consensus meeting including all stakeholders will be held to review outcomes.
The ELICIT study aims to develop a core outcome set for the evaluation of interventions intended to improve informed consent for RCTs for use in future RCTs and reviews, thereby improving the reliability and consistency of research in this area.
Electronic supplementary material
The online version of this article (doi:10.1186/s13063-015-1011-8) contains supplementary material, which is available to authorized users.
PMCID: PMC4624669  PMID: 26507504
Core outcome set; consensus methods; stakeholders; informed consent
7.  Shared decision-making: enhancing the clinical relevance 
PMCID: PMC3480854  PMID: 23104944
9.  Valuing patients' experiences of healthcare processes: Towards broader applications of existing methods☆ 
Social Science & Medicine (1982)  2014;106(100):194-203.
Healthcare policy leaders internationally recognise that people's experiences of healthcare delivery are important, and invest significant resources to monitor and improve them. However, the value of particular aspects of experiences of healthcare delivery – relative to each other and to other healthcare outcomes – is unclear.
This paper considers how economic techniques have been and might be used to generate quantitative estimates of the value of particular experiences of healthcare delivery.
A recently published conceptual map of patients' experiences served to guide the scope and focus of the enquiry. The map represented both what health services and staff are like and do and what individual patients can feel like, be and do (while they are using services and subsequently).
We conducted a systematic search for applications of economic techniques to healthcare delivery. We found that these techniques have been quite widely used to estimate the value of features of healthcare systems and processes (e.g. of care delivery by a nurse rather than a doctor, or of a consultation of 10 minutes rather than 15 minutes), but much less to estimate the value of the implications of these features for patients personally.
To inform future research relating to the valuation of experiences of healthcare delivery, we organised a workshop for key stakeholders. Participants undertook and discussed ‘exercises’ that explored the use of different economic techniques to value descriptions of healthcare delivery that linked processes to what patients felt like and were able to be and do. The workshop identified a number of methodological issues that need careful attention, and highlighted some important concerns about the ways in which quantitative estimates of the value of experiences of healthcare delivery might be used. However the workshop confirmed enthusiasm for efforts to attend directly to the implications of healthcare delivery from patients' perspectives, including in terms of their capabilities.
•Significant efforts have been made to measure experiences of healthcare delivery.•Efforts to value experiences have focused on healthcare systems and processes.•The value of their implications for patients personally has been neglected.•Economic valuation techniques are promising but face challenges in this domain.
PMCID: PMC3988932  PMID: 24568844
Quality of healthcare; Patient acceptance of healthcare; Economic evaluation; Process utility; Capabilities approach
11.  How the stigma of low literacy can impair patient-professional spoken interactions and affect health: insights from a qualitative investigation 
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.
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.
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.
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.
PMCID: PMC3751726  PMID: 23958036
Low literacy; Patient-provider communication; Patient-provider relationships; Person-centred care; Qualitative
12.  Which experiences of health care delivery matter to service users and why? A critical interpretive synthesis and conceptual map 
Patients' experiences are often treated as health care quality indicators. Our aim was to identify the range of experiences of health care delivery that matter to patients and to produce a conceptual map to facilitate consideration of why they matter.
Broad-based review and critical interpretive synthesis of research literature on patients' perspectives of health care delivery. We recorded experiences reported by a diverse range of patients on ‘concept cards’, considered why they were important, and explored various ways of organizing them, including internationally recognized health care quality frameworks. We developed a conceptual map that we refined with feedback from stakeholders.
Patients identify many health care experiences as important. Existing health care quality frameworks do not cover them all. Our conceptual map presents a rich array of experiences, including health care relationships (beyond communication) and their implications for people's valued capabilities (e.g. to feel respected, contribute to their care, experience reciprocity). It is organized to reflect our synthesis argument, which links health care delivery to what people are enabled (or not) to feel, be and do. The map highlights the broad implications of the social dynamics of health care delivery. Experiences are labelled from a patient's perspective, rendering the importance of responsiveness to individuals axiomatic.
Our conceptual map identifies and helps explain the importance of diverse experiences of health care delivery. It challenges and helps policy-makers, service providers and researchers to attend to the range of experiences that matter, and to take seriously the need for responsiveness to individuals.
PMCID: PMC3336938  PMID: 21967821
13.  Supporting Patient Autonomy: The Importance of Clinician-patient Relationships 
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.
PMCID: PMC2881979  PMID: 20213206
personal autonomy; professional-patient relations; clinical ethics; relationship-centred care
15.  Shared decision making: trade‐offs between narrower and broader conceptions 
Shared decision‐making approaches, by recognizing the autonomy and responsibility of both health professionals and patients, aim for an ethical ‘middle way’ between ‘paternalistic’ and ‘consumerist’ models of clinical decision making. Shared decision making has been understood in various ways. In this paper, we distinguish narrow and broader conceptions of shared decision making and explore their relative strengths and weaknesses. In the first part of the paper, we construct a summary characterization of an archetypal narrow conception of shared decision making (a conception that does not coincide with any specific published model but which reflects features of a variety of models). We show the shortcomings of such a conception and highlight the need to broaden out our thinking about shared decision making if the ethical (and instrumental) goals of shared decision making are to be realized. In the second part of the paper, we acknowledge and explore the advantages and disadvantages of operating with broader conceptions of shared decision making by considering the analogies between health professional–patient relationships and familiar examples of ‘open‐ended’ relationships (e.g. friendships). We conclude by arguing that the illustrated ‘trade‐offs’ between narrow conceptions (which may protect patients from inappropriately paternalistic professionals but preclude important forms of professional support) and broad conceptions (which render more forms of professional support legitimate but may require skills or virtues that not all health professionals possess) suggest the need to find ways, in principle and in practice, of taking seriously both patient autonomy and autonomy‐supportive professional intervention.
PMCID: PMC5060567  PMID: 21592264
autonomy; clinical ethics; patient participation; professional‐patient relations; shared decision‐making
17.  Health in the 'hidden population' of people with low literacy. A systematic review of the literature 
BMC Public Health  2010;10:459.
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.
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.
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.
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.
PMCID: PMC2923110  PMID: 20687946
19.  Differing perspectives on patient involvement in patient safety 
Some interventions to support patient involvement in patient safety may be justified—perhaps even ethically required
PMCID: PMC2653159  PMID: 17403749
patients; safety
20.  Reasons for participating in randomised controlled trials: conditional altruism and considerations for self 
Trials  2010;11:31.
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.
Non-participant observation of recruitment consultations (n = 25) and in-depth interviews with people invited to participate in the UK REFLUX trial (n = 13).
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.
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
PMCID: PMC2848220  PMID: 20307273
22.  Editorial 
PMCID: PMC5060507  PMID: 19912353

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