Dissenting from care.data: an analysis of opt-out forms

Background Care.data was a programme of work led by NHS England for the extraction of patient-identifiable and coded information from general practitioner GP records for secondary uses. This study analyses the forms (on the websites of GP practices) which enabled patients to opt out. Methods Theoretical sampling and summative content analysis were used to collect and analyse dissent forms used by patients to opt out from care.data. Domains included basic information about the programme, types of objections and personal details required for identification purposes. Results One hundred opt out forms were analysed. Fifty-four forms mentioned that this programme was run by NHS England. Eighty-one forms provided 2 types of objections to data sharing and 15 provided only one objection. Only 26 forms mentioned that direct care would not be affected and 32 that patients maintain their right to opt back in anytime. All but one of the opt out forms we reviewed requested the name of the person wishing to opt out. Ninety-four required a date of birth and 33 an NHS number. Eighty-two required an address, 42 a telephone number and 7 an email address. Conclusion Numbers of patients (not) opting out should be treated with caution because the variability of information provided and the varied options for dissent may have caused confusion among patients. To ensure that dissent is in accordance with individual preferences and moral values, we recommend that well-designed information material and standardised opt out forms be developed for such data sharing initiatives

Encoding truths?

This chapter critically examines an instrument at the meso-level of healthcare which was used to operationalise marketisation: Diagnosis-Related Groups (DRGs). It will contest four constitutive claims that have accompanied the introduction of DRGs: First, the claim that marketisation or quasi-marketisation is theologically and ethically neutral; second, the assumption that marketisation is a natural, impersonal and global evolution. Third, the claim that DRGs represent care transparently and therefore better, suggested by phrases such as ‘money follows the patient’. Finally, the claim that DRGs do not touch the substance of medical work will be examined. The four theologically informed counterpoints to the DRG system are theological significance, historical interpretation and consequently systemic responsibility, the representation of care and the transformative nature of vocation. These destabilise the marketisation discourse, which has attempted a transvaluation of values, fundamentally relocating and redefining healthcare whilst concealing this very move

The teaching of surgery in the undergraduate curriculum – reforms and results

AbstractIn the past decade, the teaching of surgery in the undergraduate curriculum has undergone considerable changes in quantity, mode and method of delivery. This is a result of the radical reforms of higher education, the health service and the undergraduate medical curriculum. These reforms are often interrelated and are occurring in conjunction with major changes in healthcare delivery. In this article we discuss this reorganisation, the rationale behind it and the impact on surgical teaching

Boosting Healthier Choices

Thomas Rouyard and colleagues discuss use of the boosting approach as an alternative to nudging in developing non-coercive interventions to promote health

Singling out the double effect - some further comment.

We comment on a paper published in the same issue of the London Journal of Primary Care. We applaud Bow's engagement with the ethical issues in a previous LJPC paper but argue that further work is needed to establish the everyday moral concerns of health care workers in primary care. We also suggest that the ethical distinction between advice and medication and devices may be artificial if both have an effect on a patient

Policies on doctors’ declaration of interests in medical organisations : a thematic analysis

ObjectivesThere has been growing concern about doctors? conflicts of interests (COIs) but it is unclear what processes and tools exist to enable the consistent declaration and management of such interests. This study mapped existing policies across a variety of organisations and settings to better understand the degree of variation and identify opportunities for improvement.DesignThematic analysis.Setting and ParticipantsWe studied the COI policies of 31 UK and international organisations which set or influence professional standards or engage doctors in healthcare commissioning and provision settings.Main outcome measures:Organisational policy similarities and differences.ResultsMost policies (29/31) referred to the need for individuals to apply judgement when deciding whether an interest is a conflict, with just over half (18/31) advocating a low threshold. Policies differed on the perception of frequency of COI, the timings of declarations, the type of interests that needed to be declared, and how COI and policy breaches should be managed. Just 14/31 policies stated a duty to report concerns in relation to COI. Only 18/31 policies advised COI would be published, while three stated that any disclosures would remain confidential.ConclusionsThe analysis of organisational policies revealed wide variation in what interests should be declared, when and how. This variation suggests that the current system may not be adequate to maintain a high level of professional integrity in all settings and that there is a need for better standardisation that reduces the risk of errors while addressing the needs of doctors, organisations and the public.Publisher PDFPeer reviewe

Shared decision making:a need for honesty?

In this analysis we challenge the conceptual honesty of ‘shared decision-making’, arguing that whilst it is held up as an ideal decision-making standard, it is used too often to describe (and justify) decision-making practices that are not shared at all. This is problematic because if the legitimacy of a decision relies on it being ‘shared’, but it is not in fact shared, the decision loses legitimacy, or is falsely legitimised by the appearance of being shared. We argue that the realities of clinical practice mean that genuinely shared decision-making is not completely impossible but difficult to achieve in a sincere and just manner. We articulate an intentionally controversial stance, with the aim of generating thought and debate

Evaluating case studies of community-oriented integrated care.

This paper summarises a ten-year conversation within London Journal of Primary Care about the nature of community-oriented integrated care (COIC) and how to develop and evaluate it. COIC means integration of efforts for combined disease-treatment and health-enhancement at local, community level. COIC is similar to the World Health Organisation concept of a Community-Based Coordinating Hub - both require a local geographic area where different organisations align their activities for whole system integration and develop local communities for health. COIC is a necessary part of an integrated system for health and care because it enables multiple insights into 'wicked problems', and multiple services to integrate their activities for people with complex conditions, at the same time helping everyone to collaborate for the health of the local population. The conversation concludes seven aspects of COIC that warrant further attention

TIDieR-Placebo: A guide and checklist for reporting placebo and sham controls

Background Placebo or sham controls are the standard against which the benefits and harms of many active interventions are measured. Whilst the components and the method of their delivery have been shown to affect study outcomes, placebo and sham controls are rarely reported and often not matched to those of the active comparator. This can influence how beneficial or harmful the active intervention appears to be. Without adequate descriptions of placebo or sham controls, it is difficult to interpret results about the benefits and harms of active interventions within placebo-controlled trials. To overcome this problem, we developed a checklist and guide for reporting placebo or sham interventions. Methods and findings We developed an initial list of items for the checklist by surveying experts in placebo research (n = 14). Because of the diverse contexts in which placebo or sham treatments are used in clinical research, we consulted experts in trials of drugs, surgery, physiotherapy, acupuncture, and psychological interventions. We then used a multistage online Delphi process with 53 participants to determine which items were deemed to be essential. We next convened a group of experts and stakeholders (n = 16). Our main output was a modification of the existing Template for Intervention Description and Replication (TIDieR) checklist; this allows the key features of both active interventions and placebo or sham controls to be concisely summarised by researchers. The main differences between TIDieR-Placebo and the original TIDieR are the explicit requirement to describe the setting (i.e., features of the physical environment that go beyond geographic location), the need to report whether blinding was successful (when this was measured), and the need to present the description of placebo components alongside those of the active comparator. Conclusions We encourage TIDieR-Placebo to be used alongside TIDieR to assist the reporting of placebo or sham components and the trials in which they are used