Creating a health informatics data resource for hearing health research.

BACKGROUND: The National Institute of Health and Social Care Research (NIHR) Health Informatics Collaborative (HIC) for Hearing Health has been established in the UK to curate routinely collected hearing health data to address research questions. This study defines priority research areas, outlines its aims, governance structure and demonstrates how hearing health data have been integrated into a common data model using pure tone audiometry (PTA) as a case study. METHODS: After identifying key research aims in hearing health, the governance structure for the NIHR HIC for Hearing Health is described. The Observational Medical Outcomes Partnership (OMOP) was chosen as our common data model to provide a case study example. RESULTS: The NIHR HIC Hearing Health theme have developed a data architecture outlying the flow of data from all of the various siloed electronic patient record systems to allow the effective linkage of data from electronic patient record systems to research systems. Using PTAs as an example, OMOPification of hearing health data successfully collated a rich breadth of datapoints across multiple centres. CONCLUSION: This study identified priority research areas where routinely collected hearing health data could be useful. It demonstrates integration and standardisation of such data into a common data model from multiple centres. By describing the process of data sharing across the HIC, we hope to invite more centres to contribute and utilise data to address research questions in hearing health. This national initiative has the power to transform UK hearing research and hearing care using routinely collected clinical data.

Are there socio-economic inequalities in utilization of predictive biomarker tests and biological and precision therapies for cancer? A systematic review and meta-analysis.

BACKGROUND: Novel biological and precision therapies and their associated predictive biomarker tests offer opportunities for increased tumor response, reduced adverse effects, and improved survival. This systematic review determined if there are socio-economic inequalities in utilization of predictive biomarker tests and/or biological and precision cancer therapies. METHODS: MEDLINE, Embase, Scopus, CINAHL, Web of Science, PubMed, and PsycINFO were searched for peer-reviewed studies, published in English between January 1998 and December 2019. Observational studies reporting utilization data for predictive biomarker tests and/or cancer biological and precision therapies by a measure of socio-economic status (SES) were eligible. Data was extracted from eligible studies. A modified ISPOR checklist for retrospective database studies was used to assess study quality. Meta-analyses were undertaken using a random-effects model, with sub-group analyses by cancer site and drug class. Unadjusted odds ratios (ORs) and 95% confidence intervals (CIs) were computed for each study. Pooled utilization ORs for low versus high socio-economic groups were calculated for test and therapy receipt. RESULTS: Among 10,722 citations screened, 62 papers (58 studies; 8 test utilization studies, 37 therapy utilization studies, 3 studies on testing and therapy, 10 studies without denominator populations or which only reported mean socio-economic status) met the inclusion criteria. Studies reported on 7 cancers, 5 predictive biomarkers tests, and 11 biological and precision therapies. Thirty-eight studies (including 1,036,125 patients) were eligible for inclusion in meta-analyses. Low socio-economic status was associated with modestly lower predictive biomarker test utilization (OR 0.86, 95% CI 0.71-1.05; 10 studies) and significantly lower biological and precision therapy utilization (OR 0.83, 95% CI 0.75-0.91; 30 studies). Associations with therapy utilization were stronger in lung cancer (OR 0.71, 95% CI 0.51-1.00; 6 studies), than breast cancer (OR 0.93, 95% CI 0.78-1.10; 8 studies). The mean study quality score was 6.9/10. CONCLUSIONS: These novel results indicate that there are socio-economic inequalities in predictive biomarker tests and biological and precision therapy utilization. This requires further investigation to prevent differences in outcomes due to inequalities in treatment with biological and precision therapies.

Investigating the Extent to Which Patients Should Control Access to Patient Records for Research: A Deliberative Process Using Citizens' Juries.

BACKGROUND: The secondary use of health data for research raises complex questions of privacy and governance. Such questions are ill-suited to opinion polling where citizens must choose quickly between multiple-choice answers based on little information. OBJECTIVE: The aim of this project was to extend knowledge about what control informed citizens would seek over the use of health records for research after participating in a deliberative process using citizens' juries. METHODS: Two 3-day citizens' juries, of 17 citizens each, were convened to reflect UK national demographics from 355 eligible applicants. Each jury addressed the mission "To what extent should patients control access to patient records for secondary use?" Jurors heard from and questioned 5 expert witnesses (chosen either to inform the jury, or to argue for and against the secondary use of data), interspersed with structured opportunities to deliberate among themselves, including discussion and role-play. Jurors voted on a series of questions associated with the jury mission, giving their rationale. Individual views were polled using questionnaires at the beginning and at end of the process. RESULTS: At the end of the process, 33 out of 34 jurors voted in support of the secondary use of data for research, with 24 wanting individuals to be able to opt out, 6 favoring opt in, and 3 voting that all records should be available without any consent process. When considering who should get access to data, both juries had very similar rationales. Both thought that public benefit was a key justification for access. Jury 1 was more strongly supportive of sharing patient records for public benefit, whereas jury 2 was more cautious and sought to give patients more control. Many jurors changed their opinion about who should get access to health records: 17 people became more willing to support wider information sharing of health data for public benefit, whereas 2 moved toward more patient control over patient records. CONCLUSIONS: The findings highlight that, when informed of both risks and opportunities associated with data sharing, citizens believe an individual's right to privacy should not prevent research that can benefit the general public. The juries also concluded that patients should be notified of any such scheme and have the right to opt out if they so choose. Many jurors changed their minds about this complex policy question when they became more informed. Many, but not all, jurors became less skeptical about health data sharing, as they became better informed of its benefits and risks.

Socio-demographic disparities in HER2+ breast cancer trastuzumab receipt: An English population-based study.

BACKGROUND: Socio-demographic disparities in traditional breast cancer treatment receipt in non-publicly funded healthcare systems are well documented. This study investigated trastuzumab receipt by socio-demographic factors within a female, HER2+ breast cancer population in England's publicly funded National Health Service. METHODS: The English national population-based cancer registry and linked Systemic Anti-Cancer Therapy (SACT) database identified 36,985 women with HER2+ invasive breast cancer diagnosed 01/01/2012-31/12/2017. Multivariable logistic regression determined likelihood of trastuzumab receipt in (i) early and (ii) metastatic disease by deprivation category of area of residence and other socio-demographic characteristics. RESULTS: Early-stage trastuzumab receipt followed a socio-economic gradient. Women residing in the most deprived areas were 10% less likely to receive trastuzumab (multivariable OR 0.90, (95% CI) 0.83, 0.98) compared to women residing in the least deprived areas. In both early and metastatic disease, trastuzumab receipt was less likely in older women with more comorbidities, ER positive disease, and who were not discussed at a multidisciplinary team meeting. CONCLUSIONS: Despite provision of free at the point of delivery care in England, socio-demographic disparities in early-stage HER2+ trastuzumab receipt occur. Further research determining how inequities contribute to disparities in outcomes is warranted to ensure optimized trastuzumab use for all. IMPACT: Fair access to novel cancer treatments regardless of place of residence, socio-demographic characteristics, and/or cancer stage requires prioritization in future cancer improvement policies.

Identifying determinants of adherence to adjuvant endocrine therapy following breast cancer: A systematic review of reviews.

BACKGROUND: In oestrogen-receptor positive breast cancer, daily oral adjuvant endocrine therapy (ET) for at least 5 years significantly reduces risks of recurrence and breast cancer-specific mortality. However, many women are poorly adherent to ET. Development of effective adherence support requires comprehensive understanding of influences on adherence. We undertook an umbrella review to identify determinants of ET adherence. METHODS: We searched PubMed, Embase, CINAHL, PsycINFO, Cochrane and PROSPERO (inception to 08/2022) to identify systematic reviews on factors influencing ET adherence. Abstracted determinants were mapped to the World Health Organization's dimensions of adherence. Reviews were quality appraised and overlap assessed. RESULTS: Of 5732 citations screened, 17 reviews were eligible (9 quantitative primary studies; 4 qualitative primary studies; 4 qualitative or quantitative studies) including 215 primary papers. All five WHO dimensions influenced ET non-adherence: The most consistently identified non-adherence determinants were patient-related factors (e.g. lower perceived ET necessity, more treatment concerns, perceptions of ET 'cons' vs. 'pros'). Healthcare system/healthcare professional-related factors (e.g. perceived lower quality health professional interaction/relationship) were also important and, to a somewhat lesser extent, socio-economic factors (e.g. lower levels of social/economic/material support). Evidence was more mixed for medication-related and condition-related factors, but several may be relevant (e.g. experiencing side-effects, cost). Potentially modifiable factors are more influential than non-modifiable/fixed factors (e.g. patient characteristics). CONCLUSIONS: The evidence-base on ET adherence determinants is extensive. Future empirical studies should focus on less well-researched areas and settings. The determinants themselves are numerous and complex in indicating that adherence support should be multifaceted, addressing multiple determinants.

Socioeconomic Inequalities in Novel NSCLC Treatments During the Era of Tumor Biomarker-Guided Therapy: A Population-Based Cohort Study in a Publicly Funded Health Care System.

INTRODUCTION: Socioeconomic inequalities in the utilization of conventional NSCLC treatments are well documented. Nevertheless, it is not known whether these inequalities are also observed with novel anticancer therapies. This study evaluated associations between deprivation and utilization of novel anticancer therapies targeting tumor biology, the immune system, or both, within the English national publicly funded health care system. METHODS: A retrospective analysis of 90,785 patients diagnosed with having a histologically confirmed stage IV NSCLC from January 1, 2012, to December 31, 2017, sourced from the English national population-based cancer registry and linked Systemic Anti-Cancer Therapy database, was undertaken. Multivariable logistic regression evaluated the likelihood of novel anticancer therapy utilization by deprivation category of area of residence at diagnosis (measured by quintiles of the income domain of the index of multiple deprivation). RESULTS: Multivariable analyses revealed marked treatment inequalities by deprivation. Patients residing in the most deprived areas were more than half as likely to use any novel therapy (multivariable OR [mvOR] = 0.45, 95% confidence interval [CI]: 0.41-0.49) compared with patients residing in the most affluent areas. Deprivation associations with treatment utilization were slightly stronger with targeted treatments ([most versus least deprived] mvOR = 0.39, 95% CI: 0.35-0.43) than immune checkpoint inhibitors (mvOR = 0.58, 95% CI: 0.51-0.66). CONCLUSIONS: There are marked socioeconomic inequalities in NSCLC novel treatment utilization, even in the English National Health Service where treatment is free at the point of delivery. These findings have important implications for equitable delivery of drugs, which have transformed outcomes in metastatic lung cancer. Further work exploring the underlying causes is now needed.

Who Presents Where? A Population-Based Analysis of Socio-Demographic Inequalities in Head and Neck Cancer Patients' Referral Routes.

Head and neck cancers (HNC) are often late stage at diagnosis; stage is a major determinant of prognosis. The urgent cancer referral pathway (two week wait; 2WW) within England's National Health Service aims to reduce time to diagnosis. We investigated factors associated with HNC route to diagnosis. Data were obtained from the English population-based cancer registry on 66,411 primary invasive HNCs (ICD C01-14 and C31-32) diagnosed 2006-2014. Multivariable logistic regression determined the likelihood of different diagnosis routes by patients' demographic and clinical characteristics. Significant socio-demographic inequalities were observed. Emergency presentations declined over time and 2WW increased. Significant socio-demographic inequalities were observed. Non-white patients, aged over 65, residing in urban areas with advanced disease, were more likely to have emergency presentations. White males aged 55 and older with an oropharynx cancer were more likely to be diagnosed via 2WW. Higher levels of deprivation were associated with both emergency and 2WW routes. Dental referral was more likely in women, with oral cancers and lower stage disease. Despite the decline over time in emergency presentation and the increased use of 2WW, socio-demographic variation is evident in routes to diagnosis. Further work exploring the reasons for these inequalities, and the consequences for patients' care and outcomes, is urgently required.

Establishing a colorectal cancer research database from routinely collected health data: the process and potential from a pilot study.

OBJECTIVE: Colorectal cancer is a common cause of death and morbidity. A significant amount of data are routinely collected during patient treatment, but they are not generally available for research. The National Institute for Health Research Health Informatics Collaborative in the UK is developing infrastructure to enable routinely collected data to be used for collaborative, cross-centre research. This paper presents an overview of the process for collating colorectal cancer data and explores the potential of using this data source. METHODS: Clinical data were collected from three pilot Trusts, standardised and collated. Not all data were collected in a readily extractable format for research. Natural language processing (NLP) was used to extract relevant information from pseudonymised imaging and histopathology reports. Combining data from many sources allowed reconstruction of longitudinal histories for each patient that could be presented graphically. RESULTS: Three pilot Trusts submitted data, covering 12 903 patients with a diagnosis of colorectal cancer since 2012, with NLP implemented for 4150 patients. Timelines showing individual patient longitudinal history can be grouped into common treatment patterns, visually presenting clusters and outliers for analysis. Difficulties and gaps in data sources have been identified and addressed. DISCUSSION: Algorithms for analysing routinely collected data from a wide range of sites and sources have been developed and refined to provide a rich data set that will be used to better understand the natural history, treatment variation and optimal management of colorectal cancer. CONCLUSION: The data set has great potential to facilitate research into colorectal cancer.

Exploring the use of WhatsApp in out-of-hours pharmacy services: A multi-site qualitative study.

BACKGROUND: WhatsApp is an instant messaging application that has grown in popularity over the last decade. The literature has focused on the use of WhatsApp in medical, surgical and nursing disciplines, with little work exploring pharmacists' experiences of using WhatsApp to provide services. OBJECTIVE(S): The aim of this research was to explore pharmacists' experiences of using WhatsApp to support delivery of out-of-hours pharmacy services. METHODS: A qualitative design was underpinned by a phenomenological philosophy. Focus groups and an extract of the WhatsApp transcript were thematically analysed using NVivo. RESULTS: Over three hundred communication events (1580 messages) were analysed in the WhatsApp transcript. Message type was classified as follows; handover (26%, n = 410), procedural queries (26%, n = 410), laptop location (18%, n = 284), whole staff communication (24%, n = 379), clinical queries (5%, n = 79), and administrative communications (1%, n = 16). A total of five focus groups were conducted between October and November 2017 with 27 participants that included pharmacists with different levels of experience. The findings suggest that WhatsApp improved communication between junior and senior pharmacists, particularly during the global cyber crisis, and provided an opportunity to share best practice. Concerns were raised regarding the encroachment of work activities into personal time. Additionally, the tacit approval by senior pharmacists to group information sharing and solution development, despite the potential for non-active participation, highlighted the issue of collective complicity. CONCLUSIONS: WhatsApp can be a useful platform to support the delivery of out-of-hours services through professional development, improving communication and supporting relationships. This paper demonstrates that service managers must consider multiple ethico-legal and social frameworks when developing or allowing the organic development of such communication methods within healthcare provider organisations.