Cancer recording and mortality in the General Practice Research Database and linked cancer registries.

PURPOSE: Large electronic datasets are increasingly being used to evaluate healthcare delivery. The aim of this study was to compare information held by cancer registries with that of the General Practice Research Database (GPRD). METHODS: A convenience sample of 101 020 patients aged 40+ years drawn from GPRD formed the primary data source. This cohort was derived from a larger sample originally established for a cohort study of diabetes. GPRD records were linked with those from cancer registries in the National Cancer Data Repository (NCDR). Concordance between the two datasets was then evaluated. For cases recorded only on one dataset, validation was sought from other datasets (Hospital Episode Statistics and death registration) and by detailed analysis of a subset of GPRD records. RESULTS: A total of 5797 cancers (excluding non-melanomatous skin cancer) were recorded on GPRD. Of these cases, 4830 were also recorded on NCDR (concordance rate of 83.3%). Of the 976 cases recorded on GPRD but not on NCDR, 528 were present also in the hospital records or death certificates. Of the 341 cases recorded on NCDR but not on GPRD, 307 were recorded in these other two datasets. Rates of concordance varied by cancer type. Cancer registries recorded larger numbers of patients with lung, colorectal, and pancreatic cancers, whereas GPRD recorded more haematological cancers and melanomas. As expected, GPRD recorded significantly more non-melanomatous skin cancer. Concordance decreased with increasing age. CONCLUSION: Although concordance levels were reasonably high, the findings from this study can be used to direct efforts for better recording in both datasets

Views of patients about sickle cell disease management in primary care: a questionnaire-based pilot study.

OBJECTIVES: To determine how patients with sickle cell disease (SCD) perceive the quality of care that they receive from their primary healthcare providers. DESIGN: A questionnaire-based pilot study was used to elicit the views of patients about the quality of care they have been receiving from their primary healthcare providers and what they thought was the role of primary care in SCD management. SETTING: Sickle Cell Society and Sickle Cell and Thalassaemia Centre, in the London Borough of Brent. PARTICIPANTS: One hundred questionnaires were distributed to potential participants with SCD between November 2010 and July 2011 of which 40 participants responded. MAIN OUTCOME MEASURES: Analysis of 40 patient questionnaires collected over a nine-month period. RESULTS: Most patients are generally not satisfied with the quality of care that they are receiving from their primary healthcare providers for SCD. Most do not make use of general practitioner (GP) services for management of their SCD. Collecting prescriptions was the reason most cited for visiting the GP. CONCLUSION: GPs could help improve the day-to-day management of patients with SCD. This could be facilitated by local quality improvement schemes in areas with high disease prevalence. The results of the survey have been used to help develop a GP education intervention and a local enhanced service to support primary healthcare clinicians with SCDs ongoing management

Patients' views on improving sickle cell disease management in primary care: focus group discussion.

OBJECTIVES: To assess sickle cell disease (SCD) patient and carer perspectives on the primary care services related to SCD that they receive from their general practitioner (GP). DESIGN: A focus group discussion was used to elicit the views of patients about the quality of care they receive from their primary health-care providers and what they thought was the role of primary care in SCD management. The focus group discussion was video recorded. The recording was then examined by the project team and recurring themes were identified. A comparison was made with notes made by two scribes also present at the discussion. SETTING: Sickle Cell Society in Brent, UK. PARTICIPANTS: Ten participants with SCD or caring for someone with SCD from Northwest London, UK. MAIN OUTCOME MEASURES: Patients perceptions about the primary care services they received, and a list of key themes and suggestions. RESULTS: Patients and carers often bypassed GPs for acute problems but felt that GPs had an important role to play around repeat prescriptions and general health care. These service users believed SCD is often ignored and deemed unimportant by GPs. CONCLUSION: Participants wanted the health service to support primary health-care providers to improve their knowledge and understanding of SCD. Key themes and suggestions from this focus group have been used to help develop an educational intervention for general practice services that will be used to improve SCD management in primary care

An identification and brief advice programme for low-risk alcohol consumption in an acute medical setting: an implementation study.

OBJECTIVES: To implement an identification and brief advice (IBA) intervention to detect low-risk/hazardous alcohol consumption. DESIGN: Implementation was guided through the use of quality improvement tools and training. SETTING: This study was conducted over an 18-month period from April 2010 to September 2011 on a 42-bed acute medical unit at a central London acute hospital. PARTICIPANTS: All medical patients over the age of 18 admitted to the acute assessment unit were eligible; any patient unable to provide a medical history either through language barriers or due to illness was excluded. MAIN OUTCOME MEASURES: Percentage of medical patients admitted each week to the acute assessment unit who were screened for low-risk/hazardous alcohol consumption. RESULTS: Weekly data were analysed in time series run charts and cross-referenced to the date of educational sessions and their effect on the uptake of screening monitored. A demonstrable change in the mean percentage number of patients screened was observed in different time periods, 67.3-80.1%, following targeted teaching on the AAU. CONCLUSIONS: Our study demonstrates the successful use of quality improvement methodology to guide the implementation of Alcohol Use Disorders Identification Test-Consumption (AUDIT-C), an IBA intervention, in the acute medical setting. The incorporation of the AUDIT-C into an admission document has been well accepted by the junior doctors, attaining an average (mean) of 80% of patients being screened using the tool. Targeted teaching of clinical staff involved in admitting patients appears to be the most effective method in improving uptake of IBA by junior doctors

Making change last: applying the NHSIII sustainability model to healthcare improvement

The implementation of evidence-based treatments to deliver high-quality care is essential to meet the healthcare demands of aging populations. However, the sustainable application of recommended practice is difficult to achieve and variable outcomes well recognised. The NHS Institute for Innovation and Improvement Sustainability Model (SM) was designed to help healthcare teams recognise determinants of sustainability and take action to embed new practice in routine care. This article describes a formative evaluation of the application of the SM by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care for Northwest London (CLAHRC NWL). Data from project teams’ responses to the SM and formal reviews was used to assess acceptability of the SM and the extent to which it prompted teams to take action. Projects were classified as ‘engaged,’ ‘partially engaged’ and ‘non-engaged.’ Quarterly survey feedback data was used to explore reasons for variation in engagement. Score patterns were compared against formal review data and a ‘diversity of opinion’ measure was derived to assess response variance over time. Of the 19 teams, six were categorized as ‘engaged,’ six ‘partially engaged,’ and seven as ‘non-engaged.’ Twelve teams found the model acceptable to some extent. Diversity of opinion reduced over time. A minority of teams used the SM consistently to take action to promote sustainability but for the majority SM use was sporadic. Feedback from some team members indicates difficulty in understanding and applying the model and negative views regarding its usefulness. The SM is an important attempt to enable teams to systematically consider determinants of sustainability, provide timely data to assess progress, and prompt action to create conditions for sustained practice. Tools such as these need to be tested in healthcare settings to assess strengths and weaknesses and findings disseminated to aid development. This study indicates the SM provides a potentially useful approach to measuring teams’ views on the likelihood of sustainability and prompting action. Securing engagement of teams with the SM was challenging and redesign of elements may need to be considered. Capacity building and facilitation appears necessary for teams to effectively deploy the SM

Consistency and accuracy of diagnostic cancer codes generated by automated registration: comparison with manual registration

BACKGROUND: Automated procedures are increasingly used in cancer registration, and it is important that the data produced are systematically checked for consistency and accuracy. We evaluated an automated procedure for cancer registration adopted by the Lombardy Cancer Registry in 1997, comparing automatically-generated diagnostic codes with those produced manually over one year (1997). METHODS: The automatically generated cancer cases were produced by Open Registry algorithms. For manual registration, trained staff consulted clinical records, pathology reports and death certificates. The social security code, present and checked in both databases in all cases, was used to match the files in the automatic and manual databases. The cancer cases generated by the two methods were compared by manual revision. RESULTS: The automated procedure generated 5027 cases: 2959 (59%) were accepted automatically and 2068 (41%) were flagged for manual checking. Among the cases accepted automatically, discrepancies in data items (surname, first name, sex and date of birth) constituted 8.5% of cases, and discrepancies in the first three digits of the ICD-9 code constituted 1.6%. Among flagged cases, cancers of female genital tract, hematopoietic system, metastatic and ill-defined sites, and oropharynx predominated. The usual reasons were use of specific vs. generic codes, presence of multiple primaries, and use of extranodal vs. nodal codes for lymphomas. The percentage of automatically accepted cases ranged from 83% for breast and thyroid cancers to 13% for metastatic and ill-defined cancer sites. CONCLUSION: Since 59% of cases were accepted automatically and contained relatively few, mostly trivial discrepancies, the automatic procedure is efficient for routine case generation effectively cutting the workload required for routine case checking by this amount. Among cases not accepted automatically, discrepancies were mainly due to variations in coding practice

"If we use the strength of diversity among researchers we can only improve the quality and impact of our research": Issues of equality, diversity, inclusion, and transparency in the process of applying for research funding

This paper sets out the recommendations that have emerged from a six-month-long exploration and discussion of the processes that take place before research is submitted for funding: the ‘pre-award’ environment. Our work concentrated on how this environment is experienced by researchers at all career stages and from a variety of backgrounds, demographics, and disciplines, as well as by research managers and research support professionals. In the later stages of our exploration, representatives from research funders were also involved in the discussions. The primary component of this project was an analysis of pre-award activities and processes at UK universities, using information collated from workshops with researchers and research management and support staff. The findings of this analysis were presented as a workflow diagram, which was then used to surface issues relating to equality, diversity, inclusion, and transparency in context. The workflow diagram and the issues highlighted by it were used to structure discussions at a symposium for a range of research stakeholders, held in Bristol, UK, in January 2023. The recommendations set out in this paper are drawn from discussions that took place at that event. This paper is not an exhaustive landscape analysis, nor a review of existing research and practice in the area of pre-award processes or of recent thinking on the topics of equality, diversity, and inclusion (EDI). Instead, it aims to summarise and encapsulate the suggestions put forward by the stakeholders during the symposium. These recommendations, from experienced professionals working in the field, are based on their encounters with the issues raised in the project. They do not solely relate to those working on pre-award processes, but may also apply to funders, policymakers, university leaders, and professional associations, since many of the challenges flagged in our research are systemic and cultural, and reach far beyond the research office