In the context of a large between-studies heterogeneity, more than one in two patients with cancer pain also experiences BTcP, with some variability according to clinical and organizational variables.

BackgroundMany patients’ and consumers’ organizations accept drug industry funding to support their activities. As drug companies and patient groups move closer, disclosure become essential for transparency, and the internet could be a useful means of making sponsorship information accessible to the public. This survey aims to assess the transparency of a large group of Italian patient and consumer groups and a group of pharmaceutical companies, focusing on their websites.Methodology/Principal FindingsPatient and consumer groups were selected from those stated to be sponsored by a group of pharmaceutical companies on their websites. The websites were examined using two forms with principal (name of drug companies providing funds, amount of funding) and secondary indicators of transparency (section where sponsors are disclosed, update of sponsorship). Principal indicators were applied independently by two reviewers to the patient and consumer groups’ websites. Discordances were solved by discussion. One hundred fifty-seven Italian patient and consumer groups and 17 drug companies were considered. Thirteen drug companies (76%) named at least one group funded, on their Italian websites. Of these, four (31%) indicated the activities sponsored and two (15%) the amount of funding. Of the 157 patient and consumer groups, 46 (29%) named at least one pharmaceutical company as providing funds. Three (6%) reported the amount of funding, 25 (54%) the activities funded, none the proportion of income derived from drug companies. Among the groups naming pharmaceutical company sponsors, 15 (33%) declared them in a dedicated section, five (11%) on the home page, the others in the financial report or other sections.Conclusions/SignificanceDisclosure of funds is scarce on Italian patient and consumer groups’ websites. The levels of transparency need to be improved. Disclosure of patient and consumer groups provided with funds is frequent on Italian pharmaceutical companies’ websites, but information are often not complete.

The observed results, even if the small sample size and the nature itself of the study do not allow a definitive evaluation of the effectiveness of the drugs, underline a degree of variability among opioids and address toward a correct planning of a comparative randomized clinical trial that is now underway in Italy. For this reason, a confirmative effectiveness randomized controlled trial is required.

ContextIn recent years, the continuous improvements in molecular biology techniques have made it possible to detect carriers for several genetic conditions, including cystic fibrosis (CF). In some countries, CF carrier screening is offered to increasing subset of the general population.Offering of carrier screening at a population level should not be decided by local health authorities only, without consulting citizens' preferences. One way to involve citizens in the decision process might be to a Citizens' jury, a method of deliberative democracy.ObjectiveThe object of the study is to produce a recommendation statement about CF carrier screening using a Citizens' jury. As this is a new method in the field, the study also provided the opportunity to evaluate its effectiveness.DesignThe project is designed and managed by an executive committee. The whole process is superintended by a multidisciplinary scientific committee. The 16 members of the jury attend a 1 day meeting, assisted by a non‐medical and unbiased facilitator. Informative material was prepared and distributed 15 days before the jury meeting; during the meeting, experts and witnesses interact directly with all the jurors through questions and answers.ResultsAll except one member of the jury felt positively about the Health Service actively providing population carrier screening for CF. The final statement was available to public, clinicians, researchers and decision‐makers.DiscussionIn general, a Citizens' jury is a feasible method for involving citizens in public health decision‐making process and in particular for obtaining a community view about CF carrier screening.

BackgroundWhen properly trained through training programs on epidemiology, clinical research and healthcare policy, members of patients’/consumers’ organizations could be helpful for a patient-oriented healthcare system. Since 2006 the not for profit project PartecipaSalute has organized periodic editions of a training program for representatives of citizens’/patients’ organizations. After five editions of this training program, a survey of the long-term satisfaction and the impact on activities has been carried out.MethodsA 17-questions follow-up questionnaire has been developed. The sample comprised 99 people who had taken part in at least one program edition.ResultsThe overall response rate was 89% (89 responders/99 participants). About 98% of participants expressed general satisfaction with the training program and with the knowledge gained. Medical and informative topics were rated better than technical ones for their usefulness (96% versus 86%). The results of the survey showed a strong impact of the training course on single participants, while a weak outcome on the activities of the organizations was reported.ConclusionsThe training program was positively rated, and improvements in personal knowledge were reported. Less impact was reported on organizations’ activities. Participants showed a remarkable willingness to get more involved in healthcare decisions, and to boost their knowledge of health and research issues. The results show the importance of follow-up to understand the real value of training program and to better organize future programs.