Why it is important that we understand the information that gamete donors provide about themselves to recipients.

A personal description and goodwill message is often the only form of communication a gamete recipient receives from the donor. However, the nature of the information gamete donors leave for recipients is not well understood. This Viewpoint article discusses a recent study published in this journal that makes a significant contribution to our understanding of this area of research and raises important questions for research going forward.

The 'haves' and 'have-nots' of personal protective equipment during the COVID-19 pandemic: the ethics of emerging inequalities amongst healthcare workers.

The COVID-19 pandemic has exacerbated inequalities, including among the healthcare workforce. Based on recent literature and drawing on our experiences of working in operating theatres and critical care in the UK's National Health Service during the pandemic, we review the role of personal protective equipment and consider the ethical implications of its design, availability and provision at a time of unprecedented demand. Several important inequalities have emerged, driven by factors such as individuals purchasing their own personal protective equipment (either out of choice or to address a lack of provision), inconsistencies between guidelines issued by different agencies and organisations, and the standardised design and procurement of equipment required to protect a diverse healthcare workforce. These, we suggest, have resulted largely because of a lack of appropriate pandemic planning and coordination, as well as insufficient appreciation of the significance of equipment design for the healthcare setting. As with many aspects of the pandemic, personal protective equipment has created and revealed inequalities driven by economics, gender, ethnicity and professional influence, creating a division between the 'haves' and 'have-nots' of personal protective equipment. As the healthcare workforce continues to cope with ongoing waves of COVID-19, and with the prospect of more pandemics in the future, it is vital that these inequalities are urgently addressed, both through academic analysis and practical action.

Should Mitochondrial Donation Be Anonymous?

Currently in the United Kingdom, anyone donating gametes has the status of an open-identity donor. This means that, at the age of 18, persons conceived with gametes donated since April 1, 2005 have a right to access certain pieces of identifying information about their donor. However, in early 2015, the UK Parliament approved new regulations that make mitochondrial donors anonymous. Both mitochondrial donation and gamete donation are similar in the basic sense that they involve the contribution of gamete materials to create future persons. Given this similarity, this paper presumes that both types of donor should be treated the same and made open-identity under the law, unless there is a convincing argument for treating them differently. I argue that none of the existing arguments that have been made so far in favor of mitochondrial donor anonymity are convincing and mitochondrial donors should therefore be treated as open-identity donors under UK law.

Mitochondrial Replacement: Ethics and Identity.

Mitochondrial replacement techniques (MRTs) have the potential to allow prospective parents who are at risk of passing on debilitating or even life-threatening mitochondrial disorders to have healthy children to whom they are genetically related. Ethical concerns have however been raised about these techniques. This article focuses on one aspect of the ethical debate, the question of whether there is any moral difference between the two types of MRT proposed: Pronuclear Transfer (PNT) and Maternal Spindle Transfer (MST). It examines how questions of identity impact on the ethical evaluation of each technique and argues that there is an important difference between the two. PNT, it is argued, is a form of therapy based on embryo modification while MST is, instead, an instance of selective reproduction. The article's main ethical conclusion is that, in some circumstances, there is a stronger obligation to use PNT than MST.

How much should we spend on health care?

BACKGROUND: For a tax-funded health service such as the NHS, how much is spent in total is a crucial (and necessary) decision which precedes and determines the consumption of health care by individuals. Determining total spending in private markets is not a particularly important (or necessarily interesting) issue as it is merely the sum of all the private spending decisions of individual consumers in the market. However, economists would argue there are parallels between these (collective) public and (individual) private decisions; both involve balancing costs and benefits, and trade offs with other ways of spending limited budgets. MAIN FINDINGS: Economists would further suggest a decision rule to identify how much to spend on health care (or anything else for that matter); continue increasing spending on health care until the next pound yields greater benefit from spending on some other, non-health, care activity. Although NICE operate a version of this decision rule when assessing the cost effectiveness of individual health technologies, its wider application to decide on total health spending (versus other beneficial uses of society's scarce resources) has prohibitive data implications and requires agreement on the value of the benefits side of the calculation. CONCLUSIONS: Given that a decision has to be made however, in practice the decision process falls within the political sphere, informed, up to a point, by data on the determinants of spending (eg population projections), international benchmarking and the exigencies of prevailing macroeconomic circumstances.

The ethical challenges of the clinical introduction of mitochondrial replacement techniques.

Mitochondrial DNA (mtDNA) diseases are a group of neuromuscular diseases that often cause suffering and premature death. New mitochondrial replacement techniques (MRTs) may offer women with mtDNA diseases the opportunity to have healthy offspring to whom they are genetically related. MRTs will likely be ready to license for clinical use in the near future and a discussion of the ethics of the clinical introduction of MRTs is needed. This paper begins by evaluating three concerns about the safety of MRTs for clinical use on humans: (1) Is it ethical to use MRTs if safe alternatives exist? (2) Would persons with three genetic contributors be at risk of suffering? and (3) Can society trust that MRTs will be made available for humans only once adequate safety testing has taken place, and that MRTs will only be licensed for clinical use in a way that minimises risks? It is then argued that the ethics debate about MRTs should be reoriented towards recommending ways to reduce the possible risks of MRT use on humans. Two recommendations are made: (1) licensed clinical access to MRTs should only be granted to prospective parents if they intend to tell their children about their MRT conception by adulthood; and (2) sex selection should be used in conjunction with the clinical use of MRTs, in order to reduce transgenerational health risks.

The monetary value of patient-centred care: results from a discrete choice experiment in Dutch fertility care.

STUDY QUESTION: What are patients and insurers willing to pay for different aspects of fertility care, with a particular focus on patient-centredness? SUMMARY ANSWER: In fertility care, both patients and health insurers place a high value on patient-centred factors, also when taking into account the effectiveness of fertility care. WHAT IS KNOWN ALREADY?: The benefit patients derive from fertility treatment may arise from several aspects of their care, such as the effectiveness, safety or patient-centred factors. Patient-centredness is recognized as an important, multi-dimensional concept, including domains on the organizational level (e.g. information provision) and on the human level (e.g. patient involvement). STUDY DESIGN, SIZE, AND DURATION: We performed a discrete choice experiment (DCE) within 32 Dutch fertility clinics and five large health insurance companies in the Netherlands. A total of 996 infertile patients who underwent at least one treatment cycle for their fertility problem and 84 healthcare insurers participated in the study which was executed in the summer of 2012. PARTICIPANTS/MATERIALS, SETTING, METHODS: All participating patients and health insurers completed a DCE about their preferences in fertility care regarding the effectiveness, patient-centredness of care and additional costs. Logistic regression analysis was subsequently used to determine what both patients and health insurers were willing to pay for a one-step increase in patient-centred care and 1% higher pregnancy rates. MAIN RESULTS AND THE ROLE OF CHANCE: Five hundred and fifty patients (55.2%) and 45 healthcare insurers (53.6%) completed the DCE questionnaire. Patients were willing to pay a median amount of €463 for a relevant one-step increase in patient-centred care and €107 for 1% increase in pregnancy rates. Healthcare insurers' valuations were lower: €191 for more patient-centred care and €60 for 1% increase in pregnancy rates. The willingness-to-pay values depended on patients' age, patients' ethnicity, income, and treatment type and on health insurers' age. LIMITATIONS, REASONS FOR CAUTION: An important limitation of a DCE study is that other attributes, that were not included in our study, are relevant as well. Therefore, our study participants might make other choices in real life compared with our hypothetical DCE scenarios. We tried to prevent this potential bias by selecting the most important attributes from the literature, using the input of an expert panel and performing a pilot study to test the validity of our questionnaire. WIDER IMPLICATIONS OF THE FINDINGS: This study emphasizes the importance of patient-centredness aspects of care for both infertile patients and their insurers. Therefore, efforts by policymakers and clinicians to improve these aspects of care would increase the overall value patients derive from their fertility treatment. Moreover, although insurers placed a lower monetary value on patient-centredness aspects than patients, it is arguable that insurers' purchasing decisions should be guided by patient rather than insurer preferences. Finally, given the relatively high monetary value patients place on patient-centred aspects of their fertility care, there may be a willingness to allow for some optional co-payments for this quality of care dimension. STUDY FUNDING/COMPETING INTERESTS: This work was supported by Merck Sharp and Dohme, the Netherlands. No competing interests declared. TRIAL REGISTRATION NUMBER: Clinical Trials NCT01834313.

Youth violence intervention programme for vulnerable young people attending emergency departments in London: a rapid evaluation.

Background: Youth violence intervention programmes involving the embedding of youth workers in NHS emergency departments to help young people (broadly aged between 11 and 24 years) improve the quality of their lives following their attendance at an emergency department as a result of violent assault or associated trauma are increasing across the NHS. This study evaluates one such initiative run by the charity Redthread in partnership with a NHS trust. Objectives: To evaluate the implementation and impact of a new youth violence intervention programme at University College London Hospital NHS Trust and delivered by the charity Redthread: (1) literature review of studies of hospital-based violent crime interventions; (2) evaluation of local implementation and of University College London Hospital staff and relevant local stakeholders concerning the intervention and its impact; (3) assessment of the feasibility of using routine secondary care data to evaluate the impact of the Redthread intervention; and (4) cost-effectiveness analysis of the Redthread intervention from the perspective of the NHS. Methods: The evaluation was designed as a mixed-methods multiphased study, including an in-depth process evaluation case study and quantitative and economic analyses. The project was undertaken in different stages over two years, starting with desk-based research and an exploratory phase suitable for remote working while COVID-19 was affecting NHS services. A total of 22 semistructured interviews were conducted with staff at Redthread and University College London Hospital and others (e.g. a senior stakeholder involved in NHS youth violence prevention policy). We analysed Redthread documents, engaged with experts and conducted observations of staff meetings to gather more in-depth insights about the effectiveness of the intervention, the processes of implementation, staff perceptions and cost. We also undertook quantitative analyses to ascertain suitable measures of impact to inform stakeholders and future evaluations. Results: Redthread's service was viewed as a necessary intervention, which complemented clinical and other statutory services. It was well embedded in the paediatric emergency department and adolescent services but less so in the adult emergency department. The diverse reasons for individual referrals, the various routes by which young people were identified, and the mix of specific support interventions provided, together emphasised the complexity of this intervention, with consequent challenges in implementation and evaluation. Given the relative unit costs of Redthread and University College London Hospital's inpatient services, it is estimated that the service would break even if around one-third of Redthread interventions resulted in at least one avoided emergency inpatient admission. This evaluation was unable to determine a feasible approach to measuring the quantitative impact of Redthread's youth violence intervention programme but has reflected on data describing the service, including costs, and make recommendations to support future evaluation. Limitations: The COVID-19 pandemic severely hampered the implementation of the Redthread service and the ability to evaluate it. The strongest options for analysis of effects and costs were not possible due to constraints of the consent process, problems in linking Redthread and University College London Hospital patient data and the relatively small numbers of young people having been engaged for longer-term support over the evaluation period. Conclusions: We have been able to contribute to the qualitative evidence on the implementation of the youth violence intervention programme at University College London Hospital, showing, for example, that NHS staff viewed the service as an important and needed intervention. In the light of problems with routine patient data systems and linkages, we have also been able to reflect on data describing the service, including costs, and made recommendations to support future evaluation. Future work: No future work is planned. Funding: National Institute for Health and Care Research Health Services and Delivery Research programme (RSET: 16/138/17).

Youth violence intervention programmes in the NHS embed specialist youth workers into a hospital's paediatric emergency departments. These staff can engage young people and encourage positive change in their lives. Youth violence intervention programmes are part of a broader national strategy to prevent violence among young people. To improve our knowledge of the impact on young people and the cost-effectiveness of youth violence intervention programmes, we carried out an evaluation of a youth violence intervention programme introduced in 2020 at University College London Hospital and run by the charity Redthread. We reviewed the international evidence on youth violence intervention programmes, and other studies of Redthread services but found few studies measuring impact within the NHS. We reviewed documents and conducted 22 interviews with University College London Hospital and Redthread staff among others. We found that the service is viewed positively by NHS staff. We also found that youth workers can help a young person to better engage in their medical care and treatment. Youth violence intervention programmes also provide a link with non­health-care services within the community. Overall, they help NHS staff to better support vulnerable young people following discharge from hospital. We also established the cost of delivering Redthread services per user was £1865. This compares with a cost per inpatient of £5789 for a group of patients similar to those helped by Redthread. The average cost of a Redthread-type patient attending the emergency department was £203. We looked at whether it was possible to measure whether Redthread reduced young people's re-admissions to the hospital's emergency departments. However, we concluded that fully answering this question was not possible over the timescale of the project. This was because of the impact of COVID-19 on Redthread and other paediatric services, the low numbers of young people engaged in a longer-term programme with Redthread (59) and difficulties with linking information from the hospital and Redthread. We have therefore made various recommendations in this report to improve the way that data are collected and linked to aid future evaluations.

Rapid evaluation of service innovations in health and social care: key considerations.

Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (RSET: 16/138/17; BRACE: 16/138/31).

Expensive cancer drugs: a comparison between the United States and the United Kingdom.

CONTEXT: This article compares the United Kingdom's and the United States' experiences with expensive cancer drugs to illustrate the challenges posed by new, extremely costly, medical technologies. METHODS: This article describes British and American coverage, access, and cost-sharing policies with regard to expensive cancer drugs and then compares the costs of eleven such drugs to British patients, American Medicare beneficiaries, and American patients purchasing the drugs in the retail market. Three questions posed by these comparisons are then examined: First, which system is fairer? In which system are cancer patients better off? Assuming that no system can sustainably provide to everyone at least some expensive cancer drugs for some clinical indications, what challenges does each system face in making these difficult determinations? FINDINGS: In both the British and American health care systems, not all patients who might benefit from or desire access to expensive cancer drugs have access to them. The popular characterization of the United States, where all cancer drugs are available for all to access as and when needed, and that of the British NHS, where top-down population rationing poses insurmountable obstacles to British patients' access, are far from the reality in both countries. CONCLUSIONS: Key elements of the British system are fairer than the American system, and the British system is better structured to deal with difficult decisions about expensive end-of-life cancer drugs. Both systems face common ethical, financial, organizational, and priority-setting challenges in making these decisions.

Reducing waiting times for hospital treatment: lessons from the English NHS.

In recent years, the English NHS has achieved substantial reductions in waiting times for hospital treatment. This paper considers first whether the data used by the Government provide an accurate description of changes in waiting times and identifies some of the limitations of the measures used. It then attempts to identify how reductions have been achieved. It argues that some features of central government policy have been important - such as the use of targets - others, such as the introduction of new private sector capacity have not. It also shows that changes at local level have been critical to achieving the recorded improvements, but the precise impact of these is hard to identify.

Searching for cost effectiveness thresholds in the NHS.

OBJECTIVES: The UK's National Institute of Health and Clinical Excellence (NICE) has an explicit cost-effectiveness threshold for deciding whether or not services are to be provided in the National Health Service (NHS), but there is currently little evidence to support the level at which it is set. This study examines whether it is possible to obtain such evidence by examining decision making elsewhere in the NHS. Its objectives are to set out a conceptual model linking NICE decision making based on explicit thresholds with the thresholds implicit in local decision making and to gauge the feasibility of (a) identifying those implicit local cost effectiveness thresholds and (b) using these to gauge the appropriateness of NICE's explicit threshold. METHODS: Structured interviews with senior staff, together with financial and public health information, from six NHS purchasers and 18 providers. A list of health care services introduced or discontinued in 2006/7 was constructed. Those that were in principle amenable to estimation of a cost-effectiveness ratio were examined. RESULTS: It was feasible to identify decisions and to estimate the cost-effectiveness of some. These were not necessarily 'marginal' services. Issues include: services that are dominated (or dominate); decisions about how, rather than what, services should be delivered; the lack of local cost effectiveness evidence; and considerations other than cost-effectiveness. CONCLUSIONS: A definitive finding about the consistency or otherwise of NICE and NHS cost effectiveness thresholds would require very many decisions to be observed, combined with a detailed understanding of the local decision making processes.