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Additional file 1: GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research.

Additional file 1. GRIPP2 Short Form Checklist.

Supplemental material, sj-docx-1-jvi-10.1177_02646196221112800 for Impact of Charles Bonnet Syndrome on visually impaired older adults’ ability to engage in physical activity: A scoping review by Katharine Fisher, Caroline Sanders and Emma Stanmore in The British Journal of Visual Impairment

IntroductionThe early years (ages 0-8) is a critical stage of childhood development, supporting families during this time requires collective efforts across sectors. Siloed streams limit our ability to meet families’ needs thereby missing opportunities to positively influence childhood outcomes. In northern British Columbia a small group of professionals completed training in Compassionate Systems Leadership (CSL). The CSL approach focuses on developing shared knowledge and cultural awareness to strengthen capacity to effectively progress systems change initiatives. Applying CSL with a wider community across northern BC allowed the team to examine how all partners could address silos in early years services. Aims Objectives Theory or MethodsA first step in applying CSL is to be culturally sensitive and actively relational with professionals working within early years services. In February 2021 we hosted a summit in northern BC, bringing together professionals across child and family serving sectors. The objectives were to find common ground, celebrate local work supporting children, and build on understanding priorities in the early years. Our five day event wove together Indigenous and western pedagogies, highlighting northern First Nation voices and cultural practices. The event used a hybrid model of pre-recorded asynchronous sessions with a concluding full day virtual workshop. Highlights or Results or Key FindingsEarly years services were described as patchy and inconsistent. Critically, the burden of weaving together supports falls to primary caregivers, and across sectors it was acknowledged this created gaps in comprehensive early years services. Many communities worked hard to lessen fragmentation and participants described how relational ways of being helped co-create partnered supports. Participants acknowledged that working compassionately facilitated local initiatives which positively impacted the early years, yet gaps remained including the absence of health’s engagement in work across the region. There was consensus that a holistic, culturally respectful, multidisciplinary team, which includes primary health care was needed to support the health and development needs of young children. Discussion focused on expanding hub models of care which exist in select northern communities. A clear message from the summit was a willingness for cross-sector collaboration, and the development of an integrated approach to support families in the early years is required.ConclusionsIn facilitating a safe space that allowed for vulnerability and relational ways of engaging across sectors we discovered commitment, interest, and a willingness for those present to consider new ideas and partnerships that would allow for greater integration of early years services in northern BC’s rural contexts. Implications for applicability/transferability sustainability and limitations Shifting from siloed work to integration across services is complex. Relational ways of being helped providers with this complexity, creating space to learn from each other, begin co-creation, and enhance partnerships. This was evident in early years services but is likely to apply in other service areas seeking integration.

Additional file 3. The DEPEND study toolkit.

Additional file 1. GRIPP2 long form.

Additional file 4. A new approach to collecting verbal feedback.

Additional file 2. Example trigger discussion slides used in the co-design process.

Additional file 1. Search Strategy

Background:The huge increase in smartphone use heralds an enormous opportunity for epidemiology research, but there is limited evidence regarding long-term engagement and attrition in mobile health (mHealth) studies.Objective:The objective of this study was to examine how representative the Cloudy with a Chance of Pain study population is of wider chronic-pain populations and to explore patterns of engagement among participants during the first 6 months of the study.Methods:Participants in the United Kingdom who had chronic pain (≥3 months) and enrolled between January 20, 2016 and January 29, 2016 were eligible if they were aged ≥17 years and used the study app to report any of 10 pain-related symptoms during the study period. Participant characteristics were compared with data from the Health Survey for England (HSE) 2011. Distinct clusters of engagement over time were determined using first-order hidden Markov models, and participant characteristics were compared between the clusters.Results:Compared with the data from the HSE, our sample comprised a higher proportion of women (80.51%, 5129/6370 vs 55.61%, 4782/8599) and fewer persons at the extremes of age (16-34 and 75+). Four clusters of engagement were identified: high (13.60%, 865/6370), moderate (21.76%, 1384/6370), low (39.35%, 2503/6370), and tourists (25.44%, 1618/6370), between which median days of data entry ranged from 1 (interquartile range; IQR: 1-1; tourist) to 149 (124-163; high). Those in the high-engagement cluster were typically older, whereas those in the tourist cluster were mostly male. Few other differences distinguished the clusters.Conclusions:Cloudy with a Chance of Pain demonstrates a rapid and successful recruitment of a large, representative, and engaged sample of people with chronic pain and provides strong evidence to suggest that smartphones could provide a viable alternative to traditional data collection methods.

Data coding tree (DOCX 22 kb)

COnsolidated criteria for REporting Qualitative research (COREQ) Checklist (DOCX 27 kb)

MAXimising Involvement in MUltiMorbidity (MAXIMUM) in Primary Care - Patient participant medical information form (DOCX 50 kb)

The acquisition of iron is crucial for bacterial pathogenesis. In this thesis I describe the development and validation of a biosensor for heme in bacteria, an important host source of iron for human pathogens. I demonstrate that the co-expression of a phytochrome-based fluorophore (PBF), which utilises the heme-derived metabolite biliverdin IXα as a chromophore, with a heme oxygenase (HO) in Gram-negative bacteria results in heme-dependent near infra-red fluorescence. Using this PBF+HO reporter, I probe heme metabolism in the opportunistic human pathogen Pseudomonas aeruginosa and for the first time provide direct evidence linking the previously putative heme receptor HxuC to heme metabolism. Further, coupling of the heme biosensor to transposon mutagenesis and Fluorescence-Activated Cell Sorting was used to screen a P. aeruginosa transposon library leading to the identification of several putative novel components of heme metabolism. Finally, I demonstrate the potential of our fluorescent biosensor to be used to study heme metabolism and host-pathogen interactions in vivo using a live adult zebrafish model of infection. The PBF+HO heme biosensor allows the highthroughput, non-invasive study of bacterial heme metabolism in real-time and proves a useful tool for gaining further insight into iron-heme metabolism in bacterial pathogens. Open Access

Links between presented themes and NPT components. (DOCX 16 kb)

Interview Schedule. (DOCX 17 kb)

With one million people treated every 36 hours, routinely collected UK National Health Service (NHS) health data has huge potential for medical research. Advances in data acquisition from electronic patient records (EPRs) means such data are increasingly digital and can be anonymised for research purposes. NHS England’s care.data initiative recently sought to increase the amount and availability of such data. However, controversy and uncertainty following the care.data public awareness campaign led to a delay in rollout, indicating that the success of EPR data for medical research may be threatened by a loss of patient and public trust. The sharing of sensitive health care data can only be done through maintaining such trust in a constantly evolving ethicolegal and political landscape. We propose that a dynamic consent model, whereby patients can electronically control consent through time and receive information about the uses of their data, provides a transparent, flexible, and user-friendly means to maintain public trust. This could leverage the huge potential of the EPR for medical research and, ultimately, patient and societal benefit.

Background: Whilst the experience of chronic physical conditions is well documented and has been recognised as relevant for health policy and practice little is known about notions of recovery and prognosis from the point of view of those with long-term physical health conditions. The extent to which people consider the future outcomes of their conditions is relevant to health policy which seeks to engage people in shared decision making, care plans, and self-management. This gap in knowledge about lay perceptions of recovery and prognosis becomes more pronounced when compared with literature from the mental health field in which recovery is one of the dominant foci, is comparatively well researched and in recent years has fed into policy and management approaches.Aims: The aim of the thesis is to explore perceptions of recovery and prognosis with people with long-term physical health conditions and to compare these with perspectives on recovery and prognosis apparent in the mental health field.Methodology: Using qualitative methods, a two phased approach to data collection and analysis was undertaken. Phase 1 used secondary data analysis with two existing datasets to examine whether notions of recovery and prognosis were implicit in narratives about the experience of illness. Phase 2 built on the findings from phase 1 and utilised longitudinal, primary data collection in the form of narrative interviews undertaken at two time points (baseline and 12 month follow-up). The analysis in both phases involved a cross case thematic analysis to look for commonalities and differences across individuals. Data from phase 2 were also subject to a narrative emplotment of individual stories which were used to capture the longitudinal changes in patient perspectives over time.Results: There were similarities with findings from the mental health field (recovery as a complex, nonlinear journey, the input from friends and family, notions of burden and the impact of condition on sense of self). However, there were nuanced differences in relation to physical health conditions which related to expectations about mortality, the experience of time, the extent to which narratives were future oriented and the experience of stigma. The dual focus on mental and physical health recovery proved useful for understanding those experiences of multiple morbidities. The results were used to develop a model of recovery narratives based on two dimensions (expectations and responsibility) which gave rise to four typologies of narratives. The aim of this model was to further highlight and summarise the themes arising from the data analysis.Discussion: The results of this study highlight the importance of understanding notions of recovery and prognosis in order to better understand the experience of illness and self-management. The thesis challenges the blanket use of health promotion strategies for those with and without chronic health conditions and supports a shift in policy focus from improved choice and autonomy to what Mol (2009) refers to as ‘enhanced care’.