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Our objective was to examine conflicts of interest between the UK’s health-focused All-Party Parliamentary Groups (APPGs) and the pharmaceutical industry between 2012 and 2018. APPGs are informal cross-party groups revolving around a particular topic run by and for Members of the UK’s Houses of Commons and Lords. They facilitate engagement between parliamentarians and external organisations, disseminate knowledge, and generate debate through meetings, publications, and events. We identified APPGs focusing on physical or mental health, wellbeing, health care, or treatment and extracted details of their payments from external donors disclosed on the Register for All-Party Parliamentary Groups. We identified all donors which were pharmaceutical companies and pharmaceutical industry-funded patient organisations. We established that sixteen of 146 (11%) health-related APPGs had conflicts of interest indicated by reporting payments from thirty-five pharmaceutical companies worth £1,211,345.81 (16.6% of the £7,283,414.90 received by all health-related APPGs). Two APPGs (Health and Cancer) received more than half of the total value provided by drug companies. Fifty APPGs also had received payments from patient organisations with conflicts of interest, indicated by reporting 304 payments worth £986,054.94 from 57 (of 84) patient organisations which had received £27,883,556.3 from pharmaceutical companies across the same period. In total, drug companies and drug industry-funded patient organisations provided a combined total of £2,197,400.75 (30.2% of all funding received by health-related APPGs) and 468 (of 1,177–39.7%) payments to 58 (of 146–39.7%) health-related APPGs, with the APPG for Cancer receiving the most funding. In conclusion, we found evidence of conflicts of interests through APPGs receiving substantial income from pharmaceutical companies. Policy influence exerted by the pharmaceutical industry needs to be examined holistically, with an emphasis on relationships between actors potentially playing part in its lobbying campaigns. We also suggest ways of improving transparency of payment reporting by APPGs and pharmaceutical companies.

Many patient organisations collaborate with drug companies, resulting in concerns about commercial agendas influencing patient advocacy. We contribute to an international body of knowledge on patient organisation-industry relations by considering payments reported in the industry's centralised 'collaboration database' in Sweden. We also investigate possible commercial motives behind the funding by assessing its association with drug commercialisation. Our primary data source were 1,337 payment reports from 2014-2018. After extraction and coding, we analysed the data descriptively, calculating the number, value and distribution of payments for various units of analysis, e.g. individual companies, diseases and payment goals. The association between drug commercialisation and patient organisation funding was assessed by, first, the concordance between leading companies marketing drugs in specific diseases and their funding of corresponding patient organisations and, second, the correlation between new drugs in broader condition areas and payments to corresponding patient organisations. 46 companies reported paying [euro]6,449.224 (median [euro]2,411; IQR [euro]1,024-4,569) to 77 patient organisations, but ten companies provided 67% of the funding. Small payments dominated, many of which covered costs of events organised by patient organisations. An association existed between drug commercialisation and industry funding. Companies supported patient organisations in diseases linked to their drug portfolios, with the top 3 condition areas in terms of funding-cancer; endocrine, nutritional and metabolic disorders; and infectious and parasitic disorders-accounting for 63% of new drugs and 56% of the funding. This study reveals close and widespread ties between patient organisations and drug companies. A relatively few number of companies dominated the funding landscape by supporting patient organisations in disease areas linked to their drug portfolios. This commercially motivated funding may contribute to inequalities in resource and influence between patient organisations. The association between drug commercialisation and industry funding is also worrying because of the therapeutic uncertainty of many new drugs. Our analysis benefited from the existence of a centralised database of payments-which should be adopted by other countries too-but databases should be downloadable in an analysable format to permit efficient and independent analysis.

Background Self-regulation of payment disclosure by pharmaceutical industry trade groups is a major global approach to increasing transparency of financial relationships between drug companies and healthcare professionals and organisations. Nevertheless, little is known about the relative strengths and weaknesses of self-regulation across countries, especially beyond Europe. To address this gap in research and stimulate international policy learning, we compare the UK and Japan, the likely strongest cases of self-regulation of payment disclosure in Europe and Asia, across three dimensions of transparency: disclosure rules, practices, and data. Results The UK and Japanese self-regulation of payment disclosure had shared as well unique strengths and weaknesses. The UK and Japanese pharmaceutical industry trade groups declared transparency as the primary goal of payment disclosure, without, however, explaining the link between the two. The rules of payment disclosure in each country provided more insight into some payments but not others. Both trade groups did not reveal the recipients of certain payments by default, and the UK trade group also made the disclosure of some payments conditional on recipient consent. Drug company disclosure practices were more transparent in the UK, allowing for greater availability and accessibility of payment data and insight into underreporting or misreporting of payments by companies. Nevertheless, the share of payments made to named recipients was three times higher in Japan than in the UK, indicating higher transparency of disclosure data. Conclusions The UK and Japan performed differently across the three dimensions of transparency, suggesting that any comprehensive analysis of self-regulation of payment disclosure must triangulate analysis of disclosure rules, practices, and data. We found limited evidence to support key claims regarding the strengths of self-regulation, while often finding it inferior to public regulation of payment disclosure. We suggest how the self-regulation of payment disclosure in each country can be enhanced and, in the long run, replaced by public regulation to strengthen the industry’s accountability to the public.

ObjectivesTo examine the under-reporting of pharmaceutical company payments to patient organisations by donors and recipients.DesignComparative descriptive analysis of payments disclosed on drug company and charity regulator websites.SettingUK.Participants87 donors (drug companies) and 425 recipients (patient organisations) reporting payments in 2012–2016.Main outcome measuresNumber and value of payments reported by donors and recipients; differences in reported payments from/to the same donors and recipients; payments reported in either dataset but not the other one; agreement between donor–recipient ties established by payments; overlap between donor and recipient lists and, respectively, industry and patient organisation data.ResultsOf 87 donors, 63 (72.4%) reported payments but 84 (96.6%) were mentioned by recipients. Although donors listed 425 recipients, only 200 (47.1%) reported payments. The number and value of payments reported by donors were 259.8% and 163.7% greater than those reported by recipients, respectively. The number of donors with matching payment numbers and values in both datasets were 3.4% and 0.0%, respectively; for recipients these figures were 7.8% and 1.9%. There were 24 and 3 donors missing from industry and patient organisation data during the entire study period, representing 38.1% and 3.6% of those in the respective datasets. The share of donor–recipient ties in which industry and patient organisation data agreed about donors and recipients was 38.9% and 68.4% in each dataset, respectively. Of 63 donors reporting payments, only 3 (4.8%) had their recipient lists fully overlapping with patient organisation data. Of 200 recipients reporting industry funding, 102 (51.0%) had their donor lists fully overlapping with industry data.ConclusionsBoth donors and recipients under-reported payments. Existing donor and recipient disclosure systems cannot manage potential conflicts of interest associated with industry payments. Increased standardisation could limit the under-reporting by each side but only an integrated donor–recipient database could eliminate it.

From 2012 to 2016 the drug industry donated over £57m (€65m; $73m) to UK patient organisations, with the annual sum more than doubling over the period. The funding benefited a small number of organisations and activities related to research and public involvement. The industry gave priority to commercially high profile conditions. Industry payment disclosures had limited transparency

To examine the characteristics of pharmaceutical payments to healthcare and patient organisations in the four UK countries. Compare companies spending the most; types of organisations receiving payments and types of payments in the four countries. Measure the extent to which companies target payments at the same recipients in each country and whether it differs depending on the type of recipient. Cross-sectional comparative and social network analysis. England, Scotland, Wales, Northern Ireland. 100 donors (pharmaceutical companies) reporting payments to 4229 recipients (healthcare organisations and patient organisations) in 2015. For each country: payment totals and distribution; average number of common recipients between companies; share of payments to organisations fulfilling different roles in the health ecosystem and payments for different activities. Companies prioritised different types of recipient and different types of activity in each country. There were significant differences in the distribution of payments across the four countries, even for similar types of recipients. Recipients in England and Wales received smaller individual payments than in Scotland and Northern Ireland. Overall, targeting shared recipients occurred most frequently in England, but was also common in certain pockets of each country's health ecosystem. We found evidence of reporting errors in Disclosure UK. Our findings suggest a strategic approach to payments tailored to countries' policy and decision-making context, indicating there may be specific vulnerabilities to financial conflicts of interest at subnational level. Payment differences between countries may be occurring in other countries, particularly those with decentralised health systems and/or high levels of independence across its decision-making authorities. We call for a single database containing all recipient types, full location details and published with associated descriptive and network statistics.

This practice-based, autoethnographic and participatory research investigates how aspects of hand knitting, such as stitch, colour, texture, scale and shape, can be used as a tangible, tactile tool kit to record and reflect upon an individual's emotional state. The research investigates the potential benefits, opportunities, limitations and affordances that this recording method offers and considers what impact the creation of a ‘knitted journal’ has on mental wellbeing.Framed as ‘KnitWell’, the research focuses on the creative choices one can make within knitting as a means of capturing and expressing emotions. KnitWell involves the creation of a Daily Knit Journal (DKJ) that employs a ‘free knitting’ approach. In contrast with following a pattern, free knitting enables the knitter to freely discover the craft of knitting, by selecting yarn, colour, and stitch choice in an open-ended and creative way.There are two strands to the research methodology: autoethnographic knitting practice and participatory research involving 11 knitters who took part in three iterative phases of activity. In each phase, the participants were invited to create a DKJ and complete a daily well-being scale for 28 days as well as a Warwick-Edinburgh Mental Wellbeing Scale at the beginning and end of the 28 days, followed by a material elicitation interview. The parallel autoethnographic practice allowed the researcher to investigate the technical elements of free knitting, experiment with the structure of a DKJ and embed themselves in the participant study as Participant 12.Multiple levels of analysis were conducted to examine the visual DKJs, the corresponding interview and written diary data. Analysing the participant data began with an inductive data analysis approach. Visual and technical analysis of the DKJs was undertaken using specific parameters to provide consistent interpretation. A KnitWell website was developed to visually communicate each participant’s creative knitting journey and acts as an analytical platform to share the research findings. A deductive data analysis approach was used for the autoethnographic data which began with the themes identified from the participant data. The analysis of the autoethnographic and participant data identified three core themes. The first, ‘Process and Participation’, addresses the knitters' approach to the concept of free knitting and daily knit journalling; overall, the experience of free knitting brought a new element to the knitters’ practice. The second, ‘Emotional Expression’, relates to the knitters’ articulation of emotions in their knitting, through their use of colour, stitch, and tension; analysis revealed that the tactility of knitting captured an essence of the day through its expressive nature. The third, ‘Awareness and Approach to Meaning’, unveiled the multiple layers of meaning within a DKJ; through decision making, reflection and memory-keeping, the DKJ can hold flexible meaning to the knitter.In summary, this research provides detailed insights into the value and experience of keeping a knitted journal for mental wellbeing. Evidence indicates that the KnitWell proposition provides a meaningful way of capturing emotions on a daily basis, using the flexible creativity of knitting, and has the capacity to positively impact mental wellbeing.

Electronic cigarette (e-cigarettes or vapes) use is becoming increasingly common, including among adolescents aged 12–15 years, who are often targeted through marketing and flavoured products. We aimed to investigate associations between individual, social, and environmental factors and e-cigarette never-use (hereafter referred to as never-use) among Aboriginal and Torres Strait Islander adolescents in 2018. This was a cross-sectional analysis of Wave 11 data from the Longitudinal Study of Indigenous Children (N = 440). Poisson regression was used to calculate prevalence ratios of never-use in relation to individual, social, and environmental factors. Never-use was reported by 89.3% of adolescents; 2.5% reported e-cigarette use with nicotine in the last 12 months. Never-use was associated with not using other substances (cigarettes, alcohol, or marijuana), positive social relationships as well as supportive home and education environments. We did not identify significant associations between e-cigarette use and (1) individual factors: suicidal ideation and physical activity; or e-cigarette use and (2) family factors: caregivers’ perception of the child’s friends and schooling. Never-use was common within a cohort of Aboriginal and Torres Strait Islander adolescents aged 12–15 years and was associated with supportive peer groups, school, and community environments. The factors identified as protective against e-cigarette use largely mirror those protective against cigarette use in this population.

Fuelled by the tobacco industry, commercial tobacco use is a major cause of preventable morbidity and mortality among Aboriginal and Torres Strait Islander peoples. Preventing adolescent smoking initiation is critical to reducing uptake. Understanding individual, social, and environmental factors that are protective against smoking can inform prevention strategies. We analysed data from adolescents 12–15 years and their caregivers from Wave 11 (2018) of the Longitudinal Study of Indigenous Children (LSIC). Poisson regression was used to calculate adjusted prevalence ratios (PR) of never smoking in relation to individual, social, and environmental factors adjusted for age and remoteness. Never smoking was reported by 81.3% of adolescents. Half (51.3%) of those who had ever-smoked had smoked in the last year. Never smoking was significantly associated with peer never smoking, no substance use (including e-cigarettes), positive family and school environments, no boredom, no trouble with police, and no family experiences of racism. Never smoking prevalence was twofold among adolescents who had never (versus ever) tried e-cigarettes (PR = 2.10; 95%CI: 1.41, 3.14). Fostering positive social relationships, discouraging substance use, and eliminating racism and discrimination are important in preventing adolescent smoking, offering some protection against the exploitative practices of the tobacco industry. Culturally safe structural supports and comprehensive approaches to individual, social, and environmental wellbeing are required to prevent smoking and promote wellbeing.