"I don't mind damaging my own body" a qualitative study of the factors that motivate smokers to quit.

Background Although smoking prevalence in England has declined, one in five adults smoke. Smokers are at increased risk of a number of diseases, including COPD which affects an estimated 1.5 million people in England alone. This study aimed to explore issues relating to smoking behaviour and intention to quit that might be used to inform the development of cessation interventions. Issues explored included knowledge of smoking related disease, with a particular emphasis on Chronic Obstructive Pulmonary Disease (COPD). Understanding around risk of disease, including genetic risk was explored, as were features of appropriate and accessible cessation materials and support. Methods Semi-structured interviews and focus groups were conducted with a total of 30 individuals of which 17 were smoking cessation clients and 13 were professionals working within health care settings relevant to supporting smokers to quit. A largely purposive approach was taken to sampling, and data were analysed using the constant comparative method. Results Knowledge of the smoking related disease COPD was limited. Smokers’ concerns around risk of disease were influenced by their social context and were more focussed on how their smoking might impact on the health of their family and friends, rather than how it might impact on them as individuals. Participants felt the provision of genetic risk information may have a limited impact on motivation to quit. Genetic risk was considered to be a difficult concept to understand, particularly as increased risk does not mean an individual will definitely develop disease. In terms of cessation approaches, the use of visual media was consistently supported, as was the use of materials that linked directly with life experiences. Images of children inhaling second hand smoke for example, had a particular impact. Conclusions Public health messages around the risks of smoking and approaches to quitting should continue to have an emphasis on the dangers that an individual’s smoking has on the lives of the people around them. More work also needs to be done to raise awareness around both the risk of COPD in smokers and the impact this disease has on quality of life and life expectancy

Additional file 4: of The ECOUTER methodology for stakeholder engagement in translational research

ECOUTER conceptual schema-second order constructs. Description of data: Output of second order data analysis (DOCX 13 kb

DataSHIELD: taking the analysis to the data, not the data to the analysis

BACKGROUND: Research in modern biomedicine and social science requires sample sizes so large that they can often only be achieved through a pooled co-analysis of data from several studies. But the pooling of information from individuals in a central database that may be queried by researchers raises important ethico-legal questions and can be controversial. In the UK this has been highlighted by recent debate and controversy relating to the UK's proposed 'care.data' initiative, and these issues reflect important societal and professional concerns about privacy, confidentiality and intellectual property. DataSHIELD provides a novel technological solution that can circumvent some of the most basic challenges in facilitating the access of researchers and other healthcare professionals to individual-level data. METHODS: Commands are sent from a central analysis computer (AC) to several data computers (DCs) storing the data to be co-analysed. The data sets are analysed simultaneously but in parallel. The separate parallelized analyses are linked by non-disclosive summary statistics and commands transmitted back and forth between the DCs and the AC. This paper describes the technical implementation of DataSHIELD using a modified R statistical environment linked to an Opal database deployed behind the computer firewall of each DC. Analysis is controlled through a standard R environment at the AC. RESULTS: Based on this Opal/R implementation, DataSHIELD is currently used by the Healthy Obese Project and the Environmental Core Project (BioSHaRE-EU) for the federated analysis of 10 data sets across eight European countries, and this illustrates the opportunities and challenges presented by the DataSHIELD approach. CONCLUSIONS: DataSHIELD facilitates important research in settings where: (i) a co-analysis of individual-level data from several studies is scientifically necessary but governance restrictions prohibit the release or sharing of some of the required data, and/or render data access unacceptably slow; (ii) a research group (e.g. in a developing nation) is particularly vulnerable to loss of intellectual property-the researchers want to fully share the information held in their data with national and international collaborators, but do not wish to hand over the physical data themselves; and (iii) a data set is to be included in an individual-level co-analysis but the physical size of the data precludes direct transfer to a new site for analysis