Promoting a Patient-Centered Understanding of Safety in Acute Mental Health Wards: A User-Centered Design Approach to Develop a Real-Time Digital Monitoring Tool.

BACKGROUND: Acute mental health services report high levels of safety incidents that involve both patients and staff. The potential for patients to be involved in interventions to improve safety within a mental health setting is acknowledged, and there is a need for interventions that proactively seek the patient perspective of safety. Digital technologies may offer opportunities to address this need. OBJECTIVE: This research sought to design and develop a digital real-time monitoring tool (WardSonar) to collect and collate daily information from patients in acute mental health wards about their perceptions of safety. We present the design and development process and underpinning logic model and programme theory. METHODS: The first stage involved a synthesis of the findings from a systematic review and evidence scan, interviews with patients (n=8) and health professionals (n=17), and stakeholder engagement. Cycles of design activities and discussion followed with patients, staff, and stakeholder groups, to design and develop the prototype tool. RESULTS: We drew on patient safety theory and the concepts of contagion and milieu. The data synthesis, design, and development process resulted in three prototype components of the digital monitoring tool (WardSonar): (1) a patient recording interface that asks patients to input their perceptions into a tablet computer, to assess how the ward feels and whether the direction is changing, that is, "getting worse" or "getting better"; (2) a staff dashboard and functionality to interrogate the data at different levels; and (3) a public-facing ward interface. The technology is available as open-source code. CONCLUSIONS: Recent patient safety policy and research priorities encourage innovative approaches to measuring and monitoring safety. We developed a digital real-time monitoring tool to collect information from patients in acute mental health wards about perceived safety, to support staff to respond and intervene to changes in the clinical environment more proactively.

A Community-Based Participatory Approach to Promote Healthy Eating Among Marshallese.

This article describes changes made to the menu served during the 2015 Marshallese May Day celebration in Northwest Arkansas, an annual Marshallese community event. The menu changes were part of a community-based participatory collaborative to improve nutrition and health in the Marshallese community. The 2015 May Day menu significantly reduced the 2014 May Day menu amount of calories, fat, carbohydrates, sodium, and cholesterol of foods offered by incorporating healthier ingredients and reducing portion sizes. Compared to the 2014 May Day menu, the total caloric value of the revised menu was reduced by more than 63%, declining from 1369 calories to 499 calories. The menu change affected an estimated 1,800 Marshallese in attendance for the 2015 May Day celebration. The successful implementation of the menu changes, which resulted in reductions in calories, fat, carbohydrates, sodium, and cholesterol offered to participants demonstrates the effectiveness of community-based participatory approaches in the implementation of policy, systems, and environmental strategies to promote health.

Designing a co-productive study to overcome known methodological challenges in organ donation research with bereaved family members.

BACKGROUND: Co-production of research into public health services has yet to demonstrate tangible benefits. Few studies have reported the impact of co-production on research outcomes. The previous studies of organ donation have identified challenges in engaging with public organizations responsible, gaining ethical approval for sensitive studies with the recently bereaved and difficulty in recruiting bereaved family members who were approached about organ donation. OBJECTIVE: To address these challenges, we designed the first large co-productive observational study to evaluate implementation of a new system of organ donation in Wales. This paper outlines the co-productive strategies that were designed to overcome known methodological challenges and reports what impact they had on resolving these challenges. DESIGN: Two-year co-produced study with multiple stakeholders with the specific intention of maximizing engagement with the National Health Service arm in Wales responsible for organ donation, and recruitment of bereaved family members whose perspectives are essential but commonly absent from studies. SETTING AND PARTICIPANTS: NHS Blood and Transplant, Welsh Government and multiple patient and public representatives who served as co-productive partners with the research team. RESULTS: Co-productive strategies enabled a smooth passage through four different ethics processes within the 10-week time frame, family member recruitment targets to be surpassed, sharing of routinely collected data on 100% of potential organ donor cases and development of further research capacity and capability in a critically under researched area. DISCUSSION AND CONCLUSION: Although expensive and time consuming, co-production was effective and added value to research processes and study outcomes.

Family attitudes, actions, decisions and experiences following implementation of deemed consent and the Human Transplantation (Wales) Act 2013: mixed-method study protocol.

INTRODUCTION: The Human Transplantation (Wales) Act 2013 (the Act) introduced a 'soft opt-out' system of organ donation on 1 December 2015. Citizens are encouraged to make their organ donation decision known during their lifetime. In order to work, the Act and media campaign need to create a context, whereby organ donation becomes the norm, and create a mechanism for people to behave as intended (formally register their decision; consider appointing a representative; convey their donation decision to their families and friends or do nothing-deemed consent). In addition, family members/appointed representatives need to be able to put their own views aside to support the decision of their loved one. The aim of this study is to evaluate initial implementation, outcomes and impact on families and appointed representatives who were approached about organ donation during the first 18 months. METHODS AND ANALYSIS: Prospective mixed-method coproductive study undertaken with National Health Service Blood and Transplant (NHSBT), and multiple patient/public representatives. The study is designed to collect information on all cases who meet specified criteria (≥18 years, deceased person voluntarily resident in Wales and died in Wales or England) whose family were approached between 1 December 2015 and 31 June 2017). Data for analysis include: NHSBT routinely collected anonymised audit data on all cases; Specialist Nurse in Organ Donation (SNOD) completed anonymised form for all cases documenting their perception of the families' understanding of the Act, media campaign and outcome of the donation approach; questionnaires and depth interviews with any family member or appointed representative (minimum 50 cases). Additional focus groups and interviews with SNODs. Anonymised donation outcomes and registration activity reports for Wales provide additional context. ETHICS AND DISSEMINATION: Approved by NHSBT Research, Innovation and Technology Advisory Group on 23 October 2015; Wales Research Ethics Committee 5 (IRAS190066; Rec Reference 15/WA/0414) on 25 November 2015 and NHSBT R&D Committee (NHSBT ID: AP-15-02) on 24 November 2015. REGISTRATION: The protocol is registered on the Health and Care Research Wales Clinical Research Portfolio. Study ID number 34396, www.ukctg.nihr.ac.uk.

The influence of socioeconomic deprivation on early outcomes in vascular access surgery.

INTRODUCTION: Socioeconomic deprivation is an important factor in determining poor health and is associated with a higher prevalence of many chronic diseases including diabetes and renal failure, and often poorer outcomes for patients with such conditions. The influence of deprivation on outcomes following vascular access surgery has not previously been reported. METHODS: The Welsh Index of Multiple Deprivation was used to assess the influence of socioeconomic deprivation on outcomes following 507 consecutive first upper limb arteriovenous (AV) fistulas from a single institution in the United Kingdom, performed between 2011 and 2014. The primary outcome measures were early failure and maturation into a working fistula. RESULTS: Four hundred and five (80%) patients had a patent AV fistula at the 2-week follow-up clinic. Three hundred and fifty-nine (71%) patients developed a functionally mature AV fistula as determined by clinical assessment and a Doppler scan. There were no differences in either early failure rates (p = 0.95) or maturation rates (p = 0.77) between the least and most deprived groups of patients. CONCLUSIONS: In conclusion, this study has shown that socioeconomic deprivation does not influence outcomes following vascular access surgery.

The influence of socioeconomic deprivation on outcomes in pancreas transplantation.

Socioeconomic deprivation is an important factor in determining poor health and is associated with a higher prevalence of many chronic diseases including diabetes and renal failure, with poorer outcomes of their treatments. The influence of deprivation on outcomes following pancreas transplantation has not previously been reported. The Welsh Index of Multiple Deprivation was used to assess the influence of socioeconomic deprivation on outcomes for 119 consecutive pancreas transplant recipients from a single center in the United Kingdom, transplanted between 2004 and 2013. Outcomes measured were rate of acute rejection and graft survival. Thirty-five (29.4%) patients experienced at least one episode of acute rejection following their transplant. Rejection rates in least deprived were 37% and most deprived 24% (p = 0.29). Within the individual domains, rejection rate was higher for the "physical environment" domain (least deprived 40% vs. most deprived 17% (p = 0.053). Five-year graft survival for least and most deprived groups was 75% and 88%, respectively (log-rank test p-value 0.24). This study has not demonstrated any significant differences in outcomes following pancreas transplantation in Wales in relation to socioeconomic deprivation with the exception possibly of the "physical environment" domain. Further studies with larger patient population or concentrating on physical environment deprivation would be of interest.

Multidimensional prognostic risk assessment identifies association between IL12B variation and surgery in Crohn's disease.

BACKGROUND: The ability to identify patients with Crohn's disease (CD) at highest risk of surgery would be invaluable in guiding therapy. Genome-wide association studies have identified multiple IBD loci with unknown phenotypic consequences. The aims of this study were to: (1) identify associations between known and novel CD loci with early resective CD surgery and (2) develop the best predictive model for time to surgery using a combination of phenotypic, serologic, and genetic variables. METHODS: Genotyping was performed on 1,115 subjects using Illumina-based genome-wide technology. Univariate and multivariate analyses tested genetic associations with need for surgery within 5 years. Analyses were performed by testing known CD loci (n = 71) and by performing a genome-wide association study. Time to surgery was analyzed using Cox regression modeling. Clinical and serologic variables were included along with genotype to build predictive models for time to surgery. RESULTS: Surgery occurred within 5 years in 239 subjects at a median time of 12 months. Three CD susceptibility loci were independently associated with surgery within 5 years (IL12B, IL23R, and C11orf30). Genome-wide association identified novel putative loci associated with early surgery: 7q21 (CACNA2D1) and 9q34 (RXRA, COL5A1). The most predictive models of time to surgery included genetic and clinical risk factors. More than a 20% difference in frequency of progression to surgery was seen between the lowest and highest risk groups. CONCLUSIONS: Progression to surgery is faster in patients with CD with both genetic and clinical risk factors. IL12B is independently associated with need and time to early surgery in CD patients and justifies the investigation of novel and existing therapies that affect this pathway.

Influence of socio-economic deprivation on outcomes for patients diagnosed with oesophageal cancer.

OBJECTIVE: To determine the influence of deprivation on outcomes for patients with oesophageal cancer. MATERIAL AND METHODS: A total of 1196 consecutive patients with oesophageal carcinoma presenting to a regional multidisciplinary team between 1 January 1998 and 31 August 2005 were studied prospectively and deprivation scores calculated using the Indices of Multiple Deprivation (IMD) of the National Assembly for Wales. The patients were subdivided into quintiles for analysis. RESULTS: Inhabitants of the most deprived areas (quintile 5) were younger at presentation (median age 67 years versus 70 years, p = 0.01) and were more likely to have squamous cell carcinomas (SCCs) (p = 0.002) in comparison with patients from the least deprived areas (quintile 1). Stage of disease and morbidity did not correlate with deprivation quintile, but operative mortality was greater in quintile 1 versus 5 (1.9% versus 5.8%, p = 0.281). Overall 5-year survival for those patients undergoing oesophagectomy was unrelated to deprivation quintile (1 versus 5, 24% versus 33%, p = 0.8246), but was lower following definitive chemoradiotherapy (dCRT) for the least deprived quintiles (1, 2 & 3 versus 4 & 5, 35% versus 16%, p = 0.0272). CONCLUSIONS: Although deprivation was associated with younger age, SCC and a trend towards higher operative mortality, survival after diagnosis and oesophagectomy were unrelated to deprivation.

Influence of socio-economic deprivation on outcomes for patients diagnosed with gastric cancer.

OBJECTIVE: Socio-economic deprivation has an influence on the outcome for patients diagnosed with breast, colorectal and bronchial cancer, but there are few data on its association with gastric cancer. The aim of this study was to determine the influence of socio-economic deprivation on outcomes for patients with gastric cancer. MATERIAL AND METHODS: Three hundred and thirty consecutive patients with gastric adenocarcinoma presenting to a single hospital between 1 October 1995 and 30 June 2004 were studied prospectively and deprivation scores calculated using the National Assembly for Wales Indices of Multiple Deprivation. The patients were subdivided into quintiles for analysis. RESULTS: Inhabitants of the most deprived areas (quintile 5) were younger at presentation (median 70 years versus 74 years, p=0.007), and experienced longer delays in diagnosis (18 weeks versus 9 weeks, p=0.02) when compared with patients from the least deprived areas (quintile 1). Operative mortality was 3-fold higher for patients from the most deprived areas when compared with patients from less deprived areas (15% versus 5%, p=0.03). There was no correlation between stage of disease and socio-economic deprivation. For patients undergoing potentially curative surgery, the 5-year survival for patients from the most deprived areas was 32%, compared with 66% for patients from the least deprived areas (p=0.03). CONCLUSIONS: Socio-economic deprivation was associated with younger age at diagnosis, longer diagnostic delay, greater operative mortality and a shorter duration of survival following R0 gastrectomy. These poorer outcomes were not explained by the stage of disease at diagnosis.