The increased international sharing of data in research consortia and the introduction of new technologies for sequencing challenge the informed consent (IC) process, adding complexities that require coordination between research centres worldwide. Rare disease consortia present special challenges since available data and samples may be very limited. Thus, it is especially relevant to ensure the best use of available resources but at the same time protect patients' right to integrity. To achieve this aim, there is an ethical duty to plan in advance the best possible consent procedure in order to address possible ethical and legal hurdles that could hamper research in the future. Therefore, it is especially important to identify key core elements (CEs) to be addressed in the IC documents for international collaborative research in two different situations: (1) new research collections (biobanks and registries) for which information documents can be created according to current guidelines and (2) established collections obtained without IC or with a previous consent that does not cover all CEs. We propose here a strategy to deal with consent in these situations. The principles have been applied and are in current practice within the RD-Connect consortia – a global research infrastructure funded by the European Commission Seventh Framework program but forward looking in terms of issues addressed. However, the principles established, the lessons learned and the implications for future research are of direct relevance to all internationally collaborative rare-disease projects.

Zambia and Ghana share similar health workforce challenges, including acute shortages of trained nurses and tutors in remote and rural areas, hindering achievement of Millennium Development Goals (MDG). E-learning technologies present a potential solution, with shared teaching and learning resources contributing to reduced tutor workloads; more evidence-based, student-centred education; and potential for increased student intakes. E-learning for nurse training has been successfully implemented in other African countries but not yet in Zambia or Ghana. There are many challenges and this paper describes a 10-month THET-funded Multilink project to address these. A mini-conference and field visits, in Zambia, enabled consultation on e-learning needs and 3 ICT Champions were trained to support an e-learning system developed by project partners, incorporating complementary ICT knowledge systems (one of them internet-free); a Dropbox file-share; Skype for synchronous clinical supervision (CS) of mental health nurses; 2 email networks on Maternal and Child Health (MCH) and Mental Health (MH); portable DVD players for piloting of health-related films; and a range of hard and software to support e-learning. Lessons learned from attempts to embed these technologies, and their appropriateness for the contexts concerned, are discussed.

Issues addressed:The study was designed to gain an understanding of health promotion from the perspective of oral health professionals employed in the public sector during a transition in the focus of services. Methods:A cross-sectional survey of oral health professionals employed by Queensland Health was conducted between March and April 2001. Staff were randomly sampled from employment records. A proportionate random sample, stratified across professional groups and geographical zones, was selected.Results: While the majority of the health professionals surveyed perceived oral health promotion to be part of their role, they felt ill equipped to adopt it. Professional groups differed in their confidence and perception of how to promote health in their clinical setting, existing barriers they encountered and their participation in health promotion programs. Conclusions:Strategies to improve the adoption of the oral health promotion role within Queensland public oral health services include: regular in-service and education for all staff regarding health promotion issues; increased cohesion of the oral health team; intersectorial collaboration; supportive district management; and a refocus to primary health care and public health concepts.

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