The UK Diabetes Research Network--an opportunity and a challenge.

The Department of Health has funded a national diabetes network to support clinical research. The network will facilitate recruitment into clinical trials and has been widely welcomed by clinicians. However, if the network is to reach its full potential, all those involved will need to advocate a change in attitude towards clinical trials and research, encouraging participation and contribution of data. Clinicians need to be willing to take a proactive view about research studies, and to encourage patients to adopt a positive and altruistic attitude towards trial participation. The future of trials and other important clinical research in the UK may depend on it.     

Nursing involvement in euthanasia: how sound is the philosophical support?

Abstract  Preference utilitarians are concerned to maximize the autonomous choices of individuals; for this reason, they argue that nurses ought to advocate for those patients who desire assistance with ending their lives. This approach prompts us to consider, then, the moral validity of nursing involvement in measures intended to end the lives of patients. In this article, the terms of preference utilitarianism are set out and considered in order to determine whether this approach offers sufficient philosophical support for sanctioning a role for nursing in euthanasia. Ultimately, it is found that preference utilitarianism is lacking in this respect, as well as in its fitness for guiding nursing activity in general. In particular, it is found that nurses are required to exchange a handmaiden relationship with the medical profession for an equally undignified relationship with patients. If nursing involvement in measures intended to end the lives of patients is to find sufficient philosophical support, then we need to look elsewhere.     

Global factors affecting child trauma and the need for ongoing child advocacy

Trauma has accompanied mankind since time immemorial, the brunt of it often carried by children: the weakest and most vulnerable. In the first part of this report seven important global factors affecting child trauma (inequity; childhood injuries; violence against children; road traffic crashes; alcohol; child labour; children in war) are discussed briefly in order to sketch the extent of the catastrophe. In view of this, the need for active and ongoing advocacy is highlighted in the second part. In order to motivate for ongoing advocacy, an example is provided of what can be achieved with limited resources.     

The social determinants of child health

Social determinants of health have long been recognised but their importance is often overlooked. Globally social determinants are responsible for most childhood illness and death. In the UK, conditions which constitute a large part of paediatric practice are socially patterned. Social determinants exert their influence on child health through a complex inter-relationship of more distal social factors such as income and education with more proximal factors such as health behaviours.The pathways by which the social determinants exert their influence operate over time and across generations. Socially related risk and protective factors cluster in different social groups and accumulate over time. Social determinants are profoundly influenced by social and political decisions which are beyond the control of parents and individual paediatricians. Societies can protect children against the adverse effects of social disadvantage. National paediatric societies have a key role in promoting policies which protect children. This brief review summarises the impact of social determinants on children's health in the UK and considers the role of paediatricians in reducing the health inequities generated by these determinants.     

Lessons from an Experiential Approach to Patient Community Engagement in Rare Disease

Meaningful engagement between biopharmaceutical companies and patient communities has increasingly become an important part of the therapeutic-development process, as such engagement improves the understanding of the multifaceted challenges and unmet needs that communities experience and provides an opportunity to inform the approach to the development of new therapies and services. Presented here are learnings from a community-advisor program designed to engage families of patients with Duchenne muscular dystrophy (DMD) in a manner that enabled caregivers to make valuable contributions to the therapeutic-development process and to the DMD community. Parents of children with DMD, representing the broader DMD community, were identified in partnership with patient-advocacy organizations and invited to participate in a community-advisor meeting with members of Wave Life Sciences. The community-advisor meeting was designed to provide participants with an opportunity to share their personal experiences with DMD, to help to inform the therapeutic-development process, and to identify potential solutions for addressing unmet needs. Three community-advisor meetings were held with a total of 30 parents, representing 36 children with DMD. Key themes that emerged from the advisors' discussion included the importance of the community's emotional and mental support, the inconsistencies in DMD care, the increased challenges and disparities faced by underserved communities, and the need for more comprehensive, holistic approaches to the treatment and management of DMD. The advisors viewed the meetings as an opportunity to share their voices with a biopharmaceutical company, coupled with the advantage of meeting other families living with similar challenges. Most of the advisors stated that this was their first advisor meeting. This community-focused approach empowered participants to voice their needs and perspectives, to brainstorm potential solutions for addressing those needs, and to initiate and foster connections in ways that had a considerable impact on one another and on therapeutic-development programs at Wave Life Sciences.     

Occupational Epidemiology in Agriculture: A Case Study in the Southern African Context

Abstract

Some challenges facing occupational epidemiology in developing countries are outlined in this case study of agriculture drawing on Southern African research. These include the characterization of exposures in resource- and data-poor environments typical of developing countries, the assessment of outcomes where cross-cultural and socio-environmental confounders may be substantial obstacles, and the impact of environmental exposures on workplace health. Traditional assignment of low priority to the chronic effects of low-dose exposures relative to acute morbidity in developing countries must be critically examined, as must the gender bias of much occupational epidemiology in agriculture. Advocacy issues involving child labor and the ethics of research among vulnerable groups deserve rigorous attention. It is argued that, if occupational epidemiology is to have meaningful impact on the health of the most marginalized groups of workers in developing countries, it must redefine itself in terms of a public health approach. The boundaries of epidemiologic inquiry need to be broad, and amenable to interfacing with policy research, using qualitative methods and participatory approaches. More so than in other industrial settings, epidemiologists must move from research to practice, seeking to take action where interventions are needed, and to evaluate such actions.