Children and young people's body mass index measures derived from routine data sources: A national data linkage study in Wales.

BACKGROUND: Routine monitoring of Body Mass Index (BMI) in general practice, and via national surveillance programmes, is essential for the identification, prevention, and management of unhealthy childhood weight. We examined and compared the presence and representativeness of children and young people's (CYPs) BMI recorded in two routinely collected administrative datasets: general practice electronic health records (GP-BMI) and the Child Measurement Programme for Wales (CMP-BMI), which measures height and weight in 4-5-year-old school children. We also assessed the feasibility of combining GP-BMI and CMP-BMI data for longitudinal analyses. METHODS: We accessed de-identified population-level GP-BMI data for calendar years 2011 to 2019 for 246,817 CYP, and CMP-BMI measures for 222,772 CYP, held within the Secure Anonymised Information Linkage Databank. We examined the proportion of CYP in Wales with at least one GP-BMI record, its distribution by child socio-demographic characteristics, and trends over time. We compared GP-BMI and CMP-BMI distributions. We quantified the proportion of children with a CMP-BMI measure and a follow-up GP-BMI recorded at an older age and explored the representativeness of these measures. RESULTS: We identified a GP-BMI record in 246,817 (41%) CYP, present in a higher proportion of females (54.2%), infants (20.7%) and adolescents. There was no difference in the deprivation profile of those with a GP-BMI measurement. 31,521 CYP with a CMP-BMI had at least one follow-up GP-BMI; those with a CMP-BMI considered underweight or very overweight were 87% and 70% more likely to have at least one follow-up GP-BMI record respectively compared to those with a healthy weight, as were males and CYP living in the most deprived areas of Wales. CONCLUSIONS: Records of childhood weight status extracted from general practice are not representative of the population and are biased with respect to weight status. Linkage of information from the national programme to GP records has the potential to enhance discussions around healthy weight at the point of care but does not provide a representative estimate of population level weight trajectories, essential to provide insights into factors determining a healthy weight gain across the early life course. A second CMP measurement is required in Wales.

Epilepsy mortality in Wales during COVID-19.

PURPOSE: The COVID-19 pandemic has increased mortality worldwide and those with chronic conditions may have been disproportionally affected. However, it is unknown whether the pandemic has changed mortality rates for people with epilepsy. We aimed to compare mortality rates in people with epilepsy in Wales during the pandemic with pre-pandemic rates. METHODS: We performed a retrospective study using individual-level linked population-scale anonymised electronic health records. We identified deaths in people with epilepsy (DPWE), i.e. those with a diagnosis of epilepsy, and deaths associated with epilepsy (DAE), where epilepsy was recorded as a cause of death on death certificates. We compared death rates in 2020 with average rates in 2015-2019 using Poisson models to calculate death rate ratios. RESULTS: There were 188 DAE and 628 DPWE in Wales in 2020 (death rates: 7.7/100,000/year and 25.7/100,000/year). The average rates for DAE and DPWE from 2015 to 2019 were 5.8/100,000/year and 23.8/100,000/year, respectively. Death rate ratios (2020 compared to 2015-2019) for DAE were 1.34 (95%CI 1.14-1.57, p<0.001) and for DPWE were 1.08 (0.99-1.17, p = 0.09). The death rate ratios for non-COVID deaths (deaths without COVID mentioned on death certificates) for DAE were 1.17 (0.99-1.39, p = 0.06) and for DPWE were 0.96 (0.87-1.05, p = 0.37). CONCLUSIONS: The significant increase in DAE in Wales during 2020 could be explained by the direct effect of COVID-19 infection. Non-COVID-19 deaths have not increased significantly but further work is needed to assess the longer-term impact.

Do home adaptation interventions help to reduce emergency fall admissions? A national longitudinal data-linkage study of 657,536 older adults living in Wales (UK) between 2010 and 2017.

BACKGROUND: falls are common in older people, but evidence for the effectiveness of preventative home adaptations is limited. AIM: determine whether a national home adaptation service, Care&Repair Cymru (C&RC), identified individuals at risk of falls occurring at home and reduced the likelihood of falls. STUDY DESIGN: retrospective longitudinal controlled non-randomised intervention cohort study. SETTING: our cohort consisted of 657,536 individuals aged 60+ living in Wales (UK) between 1 January 2010 and 31 December 2017. About 123,729 individuals received a home adaptation service. METHODS: we created a dataset with up to 41 quarterly observations per person. For each quarter, we observed if a fall occurred at home that resulted in either an emergency department or an emergency hospital admission. We analysed the data using multilevel logistic regression. RESULTS: compared to the control group, C&RC clients had higher odds of falling, with an odds ratio (OR [95% confidence interval]) of 1.93 [1.87, 2.00]. Falls odds was higher for females (1.44 [1.42, 1.46]), older age (1.07 [1.07, 1.07]), increased frailty (mild 1.57 [1.55, 1.60], moderate 2.31 [2.26, 2.35], severe 3.05 [2.96, 3.13]), and deprivation (most deprived compared to least: 1.16 [1.13, 1.19]). Client fall odds decreased post-intervention; OR 0.97 [0.96, 0.97] per quarter. Regional variation existed for falls (5.8%), with most variation at the individual level (31.3%). CONCLUSIONS: C&RC identified people more likely to have an emergency fall admission occurring at home, and their service reduced the odds of falling post-intervention. Service provisioning should meet the needs of an individual and need varies by personal and regional circumstance.

Exploring the Use of Genomic and Routinely Collected Data: Narrative Literature Review and Interview Study.

BACKGROUND: Advancing the use of genomic data with routinely collected health data holds great promise for health care and research. Increasing the use of these data is a high priority to understand and address the causes of disease. OBJECTIVE: This study aims to provide an outline of the use of genomic data alongside routinely collected data in health research to date. As this field prepares to move forward, it is important to take stock of the current state of play in order to highlight new avenues for development, identify challenges, and ensure that adequate data governance models are in place for safe and socially acceptable progress. METHODS: We conducted a literature review to draw information from past studies that have used genomic and routinely collected data and conducted interviews with individuals who use these data for health research. We collected data on the following: the rationale of using genomic data in conjunction with routinely collected data, types of genomic and routinely collected data used, data sources, project approvals, governance and access models, and challenges encountered. RESULTS: The main purpose of using genomic and routinely collected data was to conduct genome-wide and phenome-wide association studies. Routine data sources included electronic health records, disease and death registries, health insurance systems, and deprivation indices. The types of genomic data included polygenic risk scores, single nucleotide polymorphisms, and measures of genetic activity, and biobanks generally provided these data. Although the literature search showed that biobanks released data to researchers, the case studies revealed a growing tendency for use within a data safe haven. Challenges of working with these data revolved around data collection, data storage, technical, and data privacy issues. CONCLUSIONS: Using genomic and routinely collected data holds great promise for progressing health research. Several challenges are involved, particularly in terms of privacy. Overcoming these barriers will ensure that the use of these data to progress health research can be exploited to its full potential.

The Value of Routinely Collected Data in Evaluating Home Assessment and Modification Interventions to Prevent Falls in Older People: Systematic Literature Review.

BACKGROUND: Falls in older people commonly occur at home. Home assessment and modification (HAM) interventions can be effective in reducing falls; however, there are some concerns over the validity of evaluation findings. Routinely collected data could improve the quality of HAM evaluations and strengthen their evidence base. OBJECTIVE: The aim of this study is to conduct a systematic review of the evidence of the use of routinely collected data in the evaluations of HAM interventions. METHODS: We searched the following databases from inception until January 31, 2020: PubMed, Ovid, CINAHL, OpenGrey, CENTRAL, LILACS, and Web of Knowledge. Eligible studies were those evaluating HAMs designed to reduce falls involving participants aged 60 years or more. We included study protocols and full reports. Bias was assessed using the Risk Of Bias In Non-Randomized Studies of Interventions (ROBINS-I) tool. RESULTS: A total of 7 eligible studies were identified in 8 papers. Government organizations provided the majority of data across studies, with health care providers and third-sector organizations also providing data. Studies used a range of demographic, clinical and health, and administrative data. The purpose of using routinely collected data spanned recruiting and creating a sample, stratification, generating independent variables or covariates, and measuring key study-related outcomes. Nonhome-based modification interventions (eg, in nursing homes) using routinely collected data were not included in this study. We included two protocols, which meant that the results of those studies were not available. MeSH headings were excluded from the PubMed search because of a reduction in specificity. This means that some studies that met the inclusion criteria may not have been identified. CONCLUSIONS: Routine data can be used successfully in many aspects of HAM evaluations and can reduce biases and improve other important design considerations. However, the use of these data in these studies is currently not widespread. There are a number of governance barriers to be overcome to allow these types of linkage and to ensure that the use of routinely collected data in evaluations of HAM interventions is exploited to its full potential.

Toward a Risk-Utility Data Governance Framework for Research Using Genomic and Phenotypic Data in Safe Havens: Multifaceted Review.

BACKGROUND: Research using genomic data opens up new insights into health and disease. Being able to use the data in association with health and administrative record data held in safe havens can multiply the benefits. However, there is much discussion about the use of genomic data with perceptions of particular challenges in doing so safely and effectively. OBJECTIVE: This study aimed to work toward a risk-utility data governance framework for research using genomic and phenotypic data in an anonymized form for research in safe havens. METHODS: We carried out a multifaceted review drawing upon data governance arrangements in published research, case studies of organizations working with genomic and phenotypic data, public views and expectations, and example studies using genomic and phenotypic data in combination. The findings were contextualized against a backdrop of legislative and regulatory requirements and used to create recommendations. RESULTS: We proposed recommendations toward a risk-utility model with a flexible suite of controls to safeguard privacy and retain data utility for research. These were presented as overarching principles aligned to the core elements in the data sharing framework produced by the Global Alliance for Genomics and Health and as practical control measures distilled from published literature and case studies of operational safe havens to be applied as required at a project-specific level. CONCLUSIONS: The recommendations presented can be used to contribute toward a proportionate data governance framework to promote the safe, socially acceptable use of genomic and phenotypic data in safe havens. They do not purport to eradicate risk but propose case-by-case assessment with transparency and accountability. If the risks are adequately understood and mitigated, there should be no reason that linked genomic and phenotypic data should not be used in an anonymized form for research in safe havens.

Public Views on Models for Accessing Genomic and Health Data for Research: Mixed Methods Study.

BACKGROUND: The literature abounds with increasing numbers of research studies using genomic data in combination with health data (eg, health records and phenotypic and lifestyle data), with great potential for large-scale research and precision medicine. However, concerns have been raised about social acceptability and risks posed for individuals and their kin. Although there has been public engagement on various aspects of this topic, there is a lack of information about public views on data access models. OBJECTIVE: This study aimed to address the lack of information on the social acceptability of access models for reusing genomic data collected for research in conjunction with health data. Models considered were open web-based access, released externally to researchers, and access within a data safe haven. METHODS: Views were ascertained using a series of 8 public workshops (N=116). The workshops included an explanation of benefits and risks in using genomic data with health data, a facilitated discussion, and an exit questionnaire. The resulting quantitative data were analyzed using descriptive and inferential statistics, and the qualitative data were analyzed for emerging themes. RESULTS: Respondents placed a high value on the reuse of genomic data but raised concerns including data misuse, information governance, and discrimination. They showed a preference for giving consent and use of data within a safe haven over external release or open access. Perceived risks with open access included data being used by unscrupulous parties, with external release included data security, and with safe havens included the need for robust safeguards. CONCLUSIONS: This is the first known study exploring public views of access models for reusing anonymized genomic and health data in research. It indicated that people are generally amenable but prefer data safe havens because of perceived sensitivities. We recommend that public views be incorporated into guidance on models for the reuse of genomic and health data.

Toward an Ethically Founded Framework for the Use of Mobile Phone Call Detail Records in Health Research.

Data derived from the plethora of networked digital devices hold great potential for public benefit. Among these, mobile phone call detail records (CDRs) present novel opportunities for research and are being used in a variety of health geography studies. Research suggests that the public is amenable to the use of anonymized CDRs for research; however, further work is needed to show that such data can be used appropriately. This study works toward an ethically founded data governance framework with social acceptability. Using a multifaceted approach, this study draws upon data governance arrangements in published health research using CDRs, with a consideration of public views and the public's information expectations from mobile network operators, and data use scenarios of CDRs in health research. The findings were considered against a backdrop of legislative and regulatory requirements. CDRs can be used at various levels of data and geographic granularity and may be integrated with additional, publicly available or restricted datasets. As such, there may be a significant risk of identity disclosure, which must be mitigated with proportionate control measures. An indicative relative risk of the disclosure model is proposed to aid this process. Subsequently, a set of recommendations is presented, including the need for greater transparency, accountability, and incorporation of public views for social acceptability. This study addresses the need for greater clarity and consistency in data governance for CDRs in health research. While recognizing the need to protect commercial interests, we propose that these recommendations be used to contribute toward an ethically founded practical framework to promote the safe, socially acceptable use of CDR data for public benefit. This pattern needs to be repeated for the appropriate use of new and emerging data types from other networking devices and the wider internet of things.

Public Views on Using Mobile Phone Call Detail Records in Health Research: Qualitative Study.

BACKGROUND: Mobile phone call detail records (CDRs) are increasingly being used in health research. The location element in CDRs is used in various health geographic studies, for example, to track population movement and infectious disease transmission. Vast volumes of CDRs are held by multinational organizations, which may make them available for research under various data governance regimes. However, there is an identified lack of public engagement on using CDRs for health research to contribute to an ethically founded framework. OBJECTIVE: This study aimed to explore public views on the use of call detail records in health research. METHODS: Views on using CDRs in health research were gained via a series of three public workshops (N=61) informed by a pilot workshop of 25 people. The workshops included an initial questionnaire to gauge participants' prior views, discussion on health research using CDRs, and a final questionnaire to record workshop outcome views. The resulting data were analyzed for frequencies and emerging themes. RESULTS: At the outset, most participants (66%, 40/61) knew that location data were collected by operators, but only 3% (2/61) knew they were being used for health research. Initially, the majority of the participants (62%, 38/61) was content for their anonymous CDRs to be used, and this increased (80%, 49/61) after the discussion explained that safeguards were in place. Participants highlighted that terms and conditions should be clearer, as should information to phone users on data collection, privacy safeguards, sharing, and uses in research. CONCLUSIONS: This is the first known study exploring public views of using mobile phone CDRs in health research. It revealed a lack of knowledge among the public on uses of CDRs and indicated that people are generally amenable to the use of anonymized data for research, but they want to be properly informed and safeguarded. We recommend that public views be incorporated into an ethically founded framework for the use of CDRs in health research to promote awareness and social acceptability in data use.

Challenges and Potential Opportunities of Mobile Phone Call Detail Records in Health Research: Review.

BACKGROUND: Call detail records (CDRs) are collected by mobile network operators in the course of providing their service. CDRs are increasingly being used in research along with other forms of big data and represent an emerging data type with potential for public good. Many jurisdictions have infrastructures for health data research that could benefit from the integration of CDRs with health data. OBJECTIVE: The objective of this study was to review how CDRs have been used in health research and to identify challenges and potential opportunities for their wider use in conjunction with health data. METHODS: A literature review was conducted using structured search terms making use of major search engines. Initially, 4066 items were identified. Following screening, 46 full text articles were included in the qualitative synthesis. Information extracted included research topic area, population of study, datasets used, information governance and ethical considerations, study findings, and data limitations. RESULTS: The majority of published studies were focused on low-income and middle-income countries. Making use of the location element in CDRs, studies often modeled the transmission of infectious diseases or estimated population movement following natural disasters with a view to implementing interventions. CDRs were used in anonymized or aggregated form, and the process of gaining regulatory approvals varied with data provider and by jurisdiction. None included public views on the use of CDRs in health research. CONCLUSIONS: Despite various challenges and limitations, anonymized mobile phone CDRs have been used successfully in health research. The use of aggregated data is a safeguard but also a further limitation. Greater opportunities could be gained if validated anonymized CDRs were integrated with routine health records at an individual level, provided that permissions and safeguards could be put in place. Further work is needed, including gaining public views, to develop an ethically founded framework for the use of CDRs in health research.