While they account for one-fifth of new cancer cases, rare cancers are difficult to study. A higher than average degree of uncertainty should be accommodated for clinical as well as for population-based decision making. Rules of rational decision making in conditions of uncertainty should be rigorously followed and would need widely informative clinical trials. In principle, any piece of new evidence would need to be exploited in rare cancers. Methodologies to explicitly weigh and combine all the available evidence should be refined, and the Bayesian logic can be instrumental to this end. Likewise, Bayesian-design trials may help optimize the low number of patients liable to be enrolled in clinical studies on rare cancers, as well as adaptive trials in general, with their inherent potential of flexibility when properly applied. While clinical studies are the mainstay to test hypotheses, the potential of electronic patient records should be exploited to generate new hypotheses, to create external controls for future studies (when internal controls are unpractical), to study effectiveness of new treatments in real conditions. Framework study protocols in specific rare cancers to stepwisely test sets of new agents, as from the early post-phase I development stage, should be encouraged. Also the compassionate and the off-label settings should be exploited to generate new evidence, and flexible regulatory innovations such as adaptive licensing could convey new agents early to rare cancer patients, while generating evidence. Though validation of surrogate end points is problematic in rare cancers, the use of an updated notion of tumor response may be of great value in the single patient to optimize the use of therapies, all the more the new ones. Disease-based communities, involving clinicians and patients, should be regularly consulted by regulatory bodies when setting their policies on drug approval and reimbursement in specific rare cancers .

In an epoch where shared decision making is gaining importance, a patient’s commitment to and knowledge about his/her health condition is becoming more and more relevant. Health literacy is one of the most important factors in enhancing the involvement of patients in their care. Nevertheless, other factors can impair patient processing and understanding of health information: psychological aspects and cognitive style may affect the way patients approach, select, and retain information. This paper describes the development and validation of a short and easy to fill-out questionnaire that measures and collects psycho-cognitive information about patients, named ALGA-C. ALGA-C is a multilingual, multidevice instrument, and its validation was carried out in healthy people and breast cancer patients. In addition to the aforementioned questionnaire, a patient profiling mechanism has also been developed. The ALGA-C Profiler enables physicians to rapidly inspect each patient’s individual cognitive profile and see at a glance the areas of concern. With this tool, doctors can modulate the language, vocabulary, and content of subsequent discussions with the patient, thus enabling easier understanding by the patient. This, in turn, helps the patient formulate questions and participate on an equal footing in the decision-making processes. Finally, a preview is given on the techniques under consideration for exploiting the constructed patient profile by a personal health record (PHR). Predefined rules will use a patient’s profile to personalise the contents of the information presented and to customise ways in which users complete their tasks in a PHR system. This optimises information delivery to patients and makes it easier for the patient to decide what is of interest to him/her at the moment.

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-The impact of cancer on healthcare is increasing. Therefore, it is key that all doctors receive oncology training. This study surveyed UK undergraduate medical schools to determine the extent of oncology training provided by their curricula. Data on foundation year (FY) and core medical training (CMT) programmes were obtained and analysed for the proportion of oncology posts. Of the responding medical schools, five (36%) had a defined period dedicated to oncology (mean 2 weeks). Four foundation schools were in London, with 10,094 FY posts in 1699 programmes. IntroductionWith one-in-four people dying from cancer in developed countries, with increasing survivorship and cancer incidence, there is an increased need for knowledge of active cancer management among doctors, irrespective of their primary, secondary or tertiary care specialisation.The World Health Organisation (WHO) and the International Union Against Cancer 1 recommend that medical students spend a minimum of two weeks training in oncology. 1 Despite this, in a study of undergraduate oncology teaching in 2007, Cave et al. observed that only 39% of UK medical students received any specific teaching in oncology; 2 the authors concluded that greater emphasis should be placed on oncology education, to prepare medical students to work with patients with cancer. 2 Consistent with the limited training in cancer care outside the speciality of oncology, a recent National Chemotherapy Advisory Group (NCAG) report has shown that the clinical care needs of patients with cancer in the community are not being met. 3 This has led to an initiative to develop the subspeciality of acute oncology. 3,4 However, an additional and sustainable solution might be to empower all doctors in primary and/or secondary care settings with the knowledge and experience to manage such patients appropriately until they can be transferred as needed to specialist oncology care.To our knowledge, except for the study by Cave et al., the extent of oncology training in undergraduate and postgraduate medical training programmes has not been previously evaluated. 2 Therefore, the aim of this study was to determine the current levels of training in oncology provided to junior doctors. Materials and methods Undergraduate and postgraduate training in oncologyTo determine undergraduate exposure to oncology, an email survey of the 29 clinical medical school deans in the UK was performed. Following undergraduate education in medicine, junior doctors in the UK complete two years of postgraduate foundation-year (FY) training before becoming eligible for full registration with the UK General Medical Council. This is followed by two years of specialist training in general and acute medicine, referred to as core medical training (CMT), before junior doctors become eligible to apply for subspeciality programmes. To assess the extent of oncology training in postgraduate training programs, data on numbers of posts by speciality in FY and CMT programmes in 2011 were obtained from the foundation scho...