Relational conceptions of paternalism: a way to rebut nanny-state accusations and evaluate public health interventions

Objectives: ‘Nanny-state’ accusations can function as powerful rhetorical weapons against interventions intended to promote public health. Public health advocates often lack effective rebuttals to these criticisms. Nanny-state accusations are largely accusations of paternalism. They conjure up emotive concern about undue governmental interference undermining peoples’ autonomy. But autonomy can be understood in various ways. We outline three main conceptions of autonomy, argue that these that can underpin three different conceptions of paternalism, and consider implications for responses to nanny-state accusations and the assessment of public health interventions. Study design and methods: Detailed conceptual analysis. Results: The conceptions of paternalism implicit in nanny-state accusations generally depend on libertarian conceptions of autonomy. These reflect unrealistic views of personal independence and do not discriminate sufficiently between trivial and important freedoms. Decisional conceptions of paternalism, like their underlying decisional conceptions of autonomy, have limited applicability in public health contexts. Relational conceptions of paternalism incorporate relational conceptions of autonomy, so recognise that personal autonomy depends on socially shaped skills, self-identities and self-evaluations as well as externally structured opportunities. They encourage attention to the various ways that social interactions and relationships, including disrespect, stigmatisation and oppression, can undermine potential for autonomy. While nanny-state accusations target any interference with negative freedom, however trivial, relational conceptions direct concerns to those infringements of negative freedom, or absences of positive freedom, serious enough to undermine self-determination, self-governance and/or self-authorisation. Conclusion: Relational conceptions of autonomy and paternalism offer public health policymakers and practitioners a means for rebutting nanny-state accusations, and can support more nuanced and more appropriately demanding appraisals of public health interventions. (249 words) Keywords: Paternalism; autonomy; nanny-state; public health; ethicsThis work is funded by NHMRC grant 1023197. Stacy Carter is funded by an NHMRC Career Development Fellowship 103296

Doctors\u27 perspectives on PSA testing illuminate established differences in prostate cancer screening rates between Australia and the UK: A qualitative study

Objectives: 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. Design: A grounded theory study. Setting: Primary care practices in Australia and the UK. Participants: 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. Results: 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. Conclusions: 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

Information flows affecting coverage of medical research in the UK quality press

The project aimed to describe and critically evaluate information flows about medical research affecting UK quality newspapers. It focused particularly on the transfer of information from peer reviewed medical journals. In-depth interviews were conducted with media relations personnel at key organisations involved in medical research or more general health issues, and with specialist medical and health correspondents working for the national broadsheet press. The samples were purposively selected. Content analysis techniques were used to study news articles derived from information published in the British Medical Journal and the Lancet, which were compared with the original journal articles and any news releases associated with them. Many interacting factors shape media coverage of medical research and the personal motivations and preferences of a variety of individuals can play an important role. However, researchers, press officers and journalists are all constrained by their working relationships and contexts, so it is possible to identify certain common patterns of influence on the information flows. Press officers' activities are constrained by the characteristics and context of their organisations, particularly by the formal and cultural position of the press office within the organisation, and by relationships with other organisations in the field of interest which compete with their own for media access. Most importantly, they are constrained by their "go-between" role between their own organisation and media representatives who themselves operate under particular constraints. Press officers who liaise with researchers and journalists must seek acceptable compromises between scientific and news values. Specialist journalists are subject to the constraints of daily news reporting, and their stories must be strong in generally applicable news values if they are to be printed. The medical correspondents interviewed tried to avoid "over-sensationalisation" of stories because they had a sense of responsibility towards both their audience and their sources, but they had to be careful not to "kill" stories in their editors' eyes. Being unable to evaluate research evidence themselves, the journalists relied heavily on the authority of orthodox medical opinion in their story selection and development decisions. Their dependenceo n sourceso f authority encouragedt hem to write within a medical paradigm. Peer reviewed medical journals, articularly prestigious general journals, are regularly used as sources of news stories. Various factors encourage press officers and journalists to focus on a research project when it is about to be published. In particular, the peer review process is used by journalists as a quality safeguard, and journal policies against prior publication of material discourage researchers from discussing their work until it is safely in academically and professionally acceptable print. Several major medical research organisations invest heavily in media relations. Those which journalists regard as credible, and which can package information to suit their needs can successfully improve their media access. Future research should consider the roles of corporate culture and of competition between organisations involved with medical research in shaping information flows and media relations activity

Health literacy: The need to consider images as well as words

Editorial - no abstract available

Some Unresolved Ethical Challenges in Healthcare Decision-Making : Navigating Family Involvement

Peer reviewedPublisher PD

Approaches to study in higher education portuguese students: a portuguese version of the Approaches and Study Skills Inventory for Students (ASSIST)

This paper examines the validity of the Approaches and Study Skills Inventory for Students—short version (ASSIST; Tait et al. in Improving student learning: Improving students as learners, 1998), to be used with Portuguese undergraduate students. The ASSIST was administrated to 566 students, in order to analyse a Portuguese version of this inventory. Exploratory factor analysis (principal axis factor analysis followed by direct oblimin rotation) reproduced the three main factors that correspond to the original dimensions of the inventory (deep, surface apathetic and strategic approaches to learning). The results are consistent with the background theory on approaches to learning. Additionally, the reliability analysis revealed acceptable internal consistency indexes for the main scales and subscales. This inventory might represent a valuable research tool for the assessment of approaches to learning among Portuguese higher education students

Recruitment to randomised trials : Strategies for Trial Enrolment and Participation Study. The STEPS study

Objectives: To identify factors associated with good and poor recruitment to multicentre trials. Data sources: Part A: database of trials started in or after 1994 and were due to end before 2003 held by the Medical Research Council and Health Technology Assessment Programmes. Part B: interviews with people playing a wide range of roles within four trials that their funders identified as ‘exemplars’. Part C: a large multicentre trial (the CRASH trial) of treatment for head injury. Review methods: The study used a number of different perspectives (‘multiple lenses’), and three components. Part A: an epidemiological review of a cohort of trials. Part B: case studies of trials that appeared to have particularly interesting lessons for recruitment. Part C: a single, in-depth case study to examine the feasibility of applying a businessorientated analytical framework as a reference model in future trials. Results: In the 114 trials found in Part A, less than one-third recruited their original target within the time originally specified, and around one-third had extensions. Factors observed more often in trials that recruited successfully were: having a dedicated trial manager, being a cancer or drug trial, and having interventions only available inside the trial. The most commonly reported strategies to improve recruitment were newsletters and mailshots, but it was not possible to assess whether they were causally linked to changes in recruitment. The analyses in Part B suggested that successful trials were those addressing clinically important questions at a timely point. The investigators were held in high esteem by the interviewees, and the trials were firmly grounded in existing clinical practices, so that the trial processes were not alien to clinical collaborators, and the results could be easily applicable to future practice. The interviewees considered that the needs of patients were well served by participation in the trials. Clinical collaborators particularly appreciated clear delineation of roles, which released them from much of the workload associated with trial participation. There was a strong feeling from interviewees that they were proud to be part of a successful team. This pride fed into further success. Good groundwork and excellent communications across many levels of complex trial structures were considered to be extremely important, including training components for learning about trial interventions and processes, and team building. All four trials had faced recruitment problems, and extra insights into the working of trials were afforded by strategies invoked to address them. The process of the case study in Part C was able to draw attention to a body of research and practice in a different discipline (academic business studies). It generated a reference model derived from a combination of business theory and work within CRASH. This enabled identification of weaker managerial components within CRASH, and initiatives to strengthen them. Although it is not clear, even within CRASH, whether the initiatives that follow from developing and applying the model will be effective in increasing recruitment or other aspects of the success of the trial, the reference model could provide a template, with potential for those managing other trials to use or adapt it, especially at foundation stages. The model derived from this project could also be used as a diagnostic tool if trials have difficulties and hence as a basis for deciding what type of remedial action to take. It may also be useful for auditing the progress of trials, such as during external review. Conclusions: While not producing sufficiently definitive results to make strong recommendations, the work here suggests that future trials should consider the different needs at different phases in the life of trials, and place greater emphasis on ‘conduct’ (the process of actually doing trials). This implies learning lessons from successful trialists and trial managers, with better training for issues relating to trial conduct. The complexity of large trials means that unanticipated difficulties are highly likely at some time in every trial. Part B suggested that successful trials were those flexible and robust enough to adapt to unexpected issues. Arguably, the trialists should also expect agility from funders within a proactive approach to monitoring ongoing trials. Further research into different recruitment patterns (including ‘failures’) may help to clarify whether the patterns seen in the ‘exemplar’ trials differ or are similar. The reference model from Part C needs to be further considered in other similar and different trials to assess its robustness. These and other strategies aimed at increasing recruitment and making trials more successful need to be formally evaluated for their effectiveness in a range of trials.Not peer reviewedPublisher PD

Reaching consensus on reporting patient and public involvement (PPI) in research: methods and lessons learned from the development of reporting guidelines

INTRODUCTION: Patient and public involvement (PPI) is inconsistently reported in health and social care research. Improving the quality of how PPI is reported is critical in developing a higher quality evidence base to gain a better insight into the methods and impact of PPI. This paper describes the methods used to develop and gain consensus on guidelines for reporting PPI in research studies (updated version of the Guidance for Reporting Patient and Public Involvement (GRIPP2)). METHODS: There were three key stages in the development of GRIPP2: identification of key items for the guideline from systematic review evidence of the impact of PPI on health research and health services, a three-phase online Delphi survey with a diverse sample of experts in PPI to gain consensus on included items and a face-to-face consensus meeting to finalise and reach definitive agreement on GRIPP2. Challenges and lessons learnt during the development of the reporting guidelines are reported. DISCUSSION: The process of reaching consensus is vital within the development of guidelines and policy directions, although debate around how best to reach consensus is still needed. This paper discusses the critical stages of consensus development as applied to the development of consensus for GRIPP2 and discusses the benefits and challenges of consensus development

Motherhood on ice? A media framing analysis of older mothers in the UK news

Changing gender roles and increased sexual and economic freedom have created opportunities for women to give birth relatively late in life. However, stigma and misplaced fears about physical capacity are often reported as sources of anxiety among older, and in vitro fertilisation-induced mothers. In this study, we apply a specially adapted method for analysing news media content to a week's selection of material in the British media following the dissemination of research at an international medical conference. Our findings suggest, despite some positive commentaries, that much negative discourse is circulated by the media about older mothers, from implied claims of selfishness (older mothers as 'delaying' conception) to violations of the 'natural order'. These latter claims reflect the long-standing ambivalence by the media generally towards scientific advancement, but they also reveal continuing resistance towards unorthodox lifestyles

The Keele community knee pain forum: action research to engage with stakeholders about the prevention of knee pain and disability

<p>Abstract</p> <p>Background</p> <p>Involvement of users in health care research is central to UK health care policy, and guidelines for involvement exist. However, there are limited examples in rheumatology research. The aim of this study was to establish a community knee pain forum aimed at engaging stakeholders in design, dissemination and prioritisation of knee pain research.</p> <p>Methods</p> <p>Ten people were recruited to the forum representing a wide range of agencies. These included Weight Watchers, the leisure industry, Beth Johnson Foundation, health and social care professionals and the public. Three two-hour meetings over a two-year period were held. Experienced qualitative researchers facilitated each meeting. Written feedback after each meeting was elicited, and a short evaluation form was mailed to all members after the final meeting.</p> <p>Results</p> <p>Establishing and maintaining a forum of mixed members required careful preparation and ongoing support. Meetings had to be well-structured in order to allow for balanced participation of lay and professional users. Users contributed to the design of methods, provided ideas for dissemination and set priorities for further research. Clear documentation of meetings ensured that users' contributions to the research cycle were transparent.</p> <p>Conclusion</p> <p>Our knee pain forum illustrates that community engagement can have a positive impact on the development, dissemination and implementation of health research. Engaging with non-academic partners enables mutual learning and this enhances the quality of NHS research.</p