Data Linkage Research Articles

Participant characteristics and reasons for non-consent to health information linkage for research: experiences from the ATHENA COVID-19 study

BackgroundThe linkage of primary care, hospital and other health registry data is a global goal, and a consent-based approach is often used. Understanding the attitudes of why participants take part is important, yet little is known about reasons for non-participation. The ATHENA COVID-19 feasibility study investigated: 1) health outcomes of people diagnosed with COVID-19 in Queensland, Australia through primary care health data linkage using consent, and 2) created a cohort of patients willing to be re-contacted in future to participate in clinical trials. This report describes the characteristics of participants declining to participate and reasons for non-consent.MethodsPatients diagnosed with COVID-19 from January 1st, 2020, to December 31st, 2020, were invited to consent to having their primary healthcare data extracted from their GP into a Queensland Health database and linked to other data sets for ethically approved research. Patients were also asked to consent to future recontact for participation in clinical trials. Outcome measures were proportions of patients consenting to data extraction, permission to recontact, and reason for consent decline.ResultsNine hundred and ninety-five participants were approached and 842(85%) reached a consent decision. 581(69%), 615(73%) and 629(75%) consented to data extraction, recontact, or both, respectively. Mean (range) age of consenters and non-consenters were 50.6(22-77) and 46.1(22-77) years, respectively. Adjusting for age, gender and remoteness, older participants were more likely to consent than younger (aOR 1.02, 95%CI 1.01 to 1.03). The least socio-economically disadvantaged were more likely to consent than the most disadvantaged (aOR 2.20, 95% 1.33 to 3.64). There was no difference in consent proportions regarding gender or living in more remote regions. The main reasons for non-consent were ‘not interested in research’ (37%), ‘concerns about privacy’ (15%), ‘not registered with a GP’ (8%) and ‘too busy/no time’ (7%). ‘No reason’ was given in 20%.ConclusionYounger participants and the more socio-economically deprived are more likely to non-consent to primary care data linkage. Lack of patient interest in research, time required to participate and privacy concerns, were the most common reasons cited for non-consent. Future health care data linkage studies addressing these issues may prove helpful.

Analysis of the Impact of Community Institutional Strengthening on the Sustainability of the "Spirit of Independence" Farmer Group and the "Industrial Circle" Livestock Group in Uso Village, Banggai Regency

The purpose of this research was to analyse the impact of strengthening community institutions on the sustainability of farmer and livestock groups. This included the process of establishing and strengthening community institutions, how the company's strategy in developing governance systems, decision-making mechanisms, system evaluation including community institutional benefits, contributions to SDGs 16 and their relation to ISO 26000. The method of this research used quantitative methods sourced from primary data and secondary data to determine the impact of strengthening community institutions on the sustainability of the Semangat Mandiri farmer group and the Lingkar Industri livestock group located in Uso village, Batui sub-district, Banggai regency, Central Sulawesi province. Data analysis was carried out using triangulation to validate data linkages from field research. Furthermore, an in-depth study of the relationship between the subject and object under study was carried out to explain the formulation of the problem and the purpose of the study and draw conclusions from the research results. The results showed that PT. PAU has a complete commitment in implementing CSR programs. This commitment could be seen from the implementation of community institutional strengthening, aspects of governance systems, decision-making mechanisms, and evaluation of governance systems in achieving ISO 26000 and SDGs 16 in farmer and livestock groups in Uso village, Banggai Regency which have a good impact on the community and the company.

A retrospective analysis of concussion and post-concussional syndrome diagnoses in Western Australian emergency departments

Objective(s)To determine the rate of concussion diagnoses per capita recorded in hospital emergency departments in Western Australia (WA) from 2002–2018 for ICD-10-AM concussion diagnoses S06.00-S06.05, and post-concussional syndrome (PCS) (F07.2). Design, setting and analysisRetrospective analysis of hospital Emergency Department (ED) presentations and hospital admissions from all WA hospitals for all patients with an ICD-10-AM diagnosis code for concussion and post-concussional syndrome (PCS) over the period 2002–2018. Data pertaining to concussion and PCS presentations were extracted from the WA Department of Health Emergency Department Data Collection (EDDC). Total case numbers were aggregated by year (2002–2018) and regions of WA. Main outcome measuresThe rates of diagnoses were calculated based on the population in the specific region and expressed as incidence rate per 100,000 person-years. The overall trends of diagnoses across the regions were analysed using negative binomial regression models and expressed as incidence rate ratio (IRR) with the corresponding 95 % CI, whilst adjusting for region. Tests for linearity were also performed. ResultsThe rate of concussion diagnosis had significantly increased linearly over the years (p for trend: p < 0.001) whilst the rate of PCS diagnosis had significantly declined linearly over the same period (p for trend: p < 0.001). ConclusionThere was significant increase in all-cause ICD-10-AM concussion diagnoses in WA emergency departments. To further clarify the incidence and prevalence of all-cause concussion in Australia, investigation must focus on truly reflective S06.0 codes and include data linkage to primary care data. Conversely PCS ED presentations reduced; whether this relates to a change in where presentations occur for management of such a diagnosis, improved early intervention or an alternative explanation warrants further investigation.

Multicenter evaluation of tofacitinib retention and safety in rheumatoid arthritis - why cardiovascular risk factors do not equate to overt risk.

This multicenter, real-world, retrospective cohort study aimed to assess the effectiveness and safety of tofacitinib (TOFA) in rheumatoid arthritis (RA). Two hundred nine patients with active RA treated with TOFA, unresponsive to at least 2 conventional synthetic disease-modifying drugs, were recruited. Clinical characteristics were extracted from an electronic registry and supplemented with manual chart review and data linkage with ambulatory care. Drug retention and reasons for discontinuation were evaluated. Median (interquartile range) follow-up in the whole sample was 16.9 (5.93-31.7) months. Mean (standard deviation) age was 51.44 (±11.84) years, with female predominance (n = 168, 80.4%). Only 30 patients (14.4%) had no pre-existing traditional cardiovascular (CV) risk factor at TOFA initiation. Tofacitinib retention rates were high, with median survival estimated at 89.3% at 6 months, 82.4% at 12 months, and 60.4% at 24 months. Ineffectiveness was the primary cause of discontinuation (n = 50). The rate of adverse events (AEs) was relatively low, with lipid abnormalities, blood count alterations, and infectious events among the most common. No major adverse CV event was reported. The incidence rate of AEs necessitating treatment switch was 60.34 (95% CI: 37-92) per 1,000 person-years of follow-up. Presence of multiple (> 3) CV risk factors was associated with lower odds of TOFA retention and treatment effectiveness. Tofacitinib demonstrated high retention rates and a favorable safety profile in RA patients, including those with traditional CV risk factors. Tofacitinib may be a valuable treatment option for RA patients when combined with individualized CV risk management. Further studies are warranted to explore the long-term effects of TOFA and its CV impact in larger populations.

Association between exposure to heavy metals in atmospheric particulate matter and sleep quality: A nationwide data linkage study

BackgroundRecent studies have demonstrated that long-term exposure to particulate matter (PM) is associated with poor sleep quality. However, no studies have linked PM constituents, particularly heavy metals, to sleep quality. ObjectiveThis study investigated the association between exposure to heavy metals in PM and sleep quality. MethodsWe obtained nationwide data from the Korean Community Health Survey conducted in 2018 among adults aged 19–80 years. Sleep quality was evaluated using Pittsburgh Sleep Quality Index (PSQI). Poor sleep quality was defined as PSQI ≥5. One-year and three-month average concentrations of heavy metals (lead, manganese, cadmium, and aluminum) in PM with diameter ≤10 μm were obtained from nationwide air quality monitoring data and linked to the survey data based on individual district-level residential addresses. Logistic regression analyses were performed after adjusting for age, gender, education level, marital status, smoking status, alcohol consumption, history of hypertension, and history of diabetes mellitus. ResultsOf 32,050 participants, 17,082 (53.3%) reported poor sleep quality. Increases in log-transformed one-year average lead (odds ratio, 1.14; 95% confidence interval, 1.08−1.20), manganese (1.31; 1.25−1.37), cadmium (1.03; 1.00−1.05), and aluminum concentrations (1.17; 1.10−1.25) were associated with poor sleep quality. Increases in log-transformed three-month average manganese (odds ratio, 1.13; 95% confidence interval, 1.09−1.17) and aluminum concentrations (1.28; 1.21−1.35) were associated with poor sleep quality. ConclusionWe showed for the first time that exposure to airborne lead, manganese, cadmium, and aluminum were associated with poor sleep quality. This study may be limited by self-reported sleep quality and district-level exposure data.

Novel linkage approach to join community-acquired and national data

BackgroundCommunity optometrists in Scotland have performed regular free-at-point-of-care eye examinations for all, for over 15 years. Eye examinations include retinal imaging but image storage is fragmented and they are not used for research. The Scottish Collaborative Optometry-Ophthalmology Network e-research project aimed to collect these images and create a repository linked to routinely collected healthcare data, supporting the development of pre-symptomatic diagnostic tools.MethodsAs the image record was usually separate from the patient record and contained minimal patient information, we developed an efficient matching algorithm using a combination of deterministic and probabilistic steps which minimised the risk of false positives, to facilitate national health record linkage. We visited two practices and assessed the data contained in their image device and Practice Management Systems. Practice activities were explored to understand the context of data collection processes. Iteratively, we tested a series of matching rules which captured a high proportion of true positive records compared to manual matches. The approach was validated by testing manual matching against automated steps in three further practices.ResultsA sequence of deterministic rules successfully matched 95% of records in the three test practices compared to manual matching. Adding two probabilistic rules to the algorithm successfully matched 99% of records.ConclusionsThe potential value of community-acquired retinal images can be harnessed only if they are linked to centrally-held healthcare care data. Despite the lack of interoperability between systems within optometry practices and inconsistent use of unique identifiers, data linkage is possible using robust, almost entirely automated processes.

Entity Management Using RDA and Wikibase: A Case Study at the National Library of Greece

The force driving the implementation of Linked Data (LD) technologies in libraries is the aspiration for widespread interoperability of library data and for advanced information services. Toward these goals, libraries change their data models, update their communication formats, and develop prototype applications that use new models and formats and enable entity-based cataloguing. The National Library of Greece (NLG) has been actively adapting its policies, workflows, and tools to make its data LD-ready. Within this context, NLG has developed -in cooperation with Open Knowledge Greece- an entity management prototype using RDA/RDF in a Wikibase instance. The vision is to build a shared entity management system used by all memory institutions in Greece to describe entities of Greek interest. Data is to be stored as a knowledge graph that can be exported in RDF serializations, and in legacy MARC format. This paper first examines related efforts from other National Libraries, and then outlines the steps involved in the publication of the NLG Authority File as linked data; namely dataset selection, modeling, data curation, mapping, and publication. The development of the NLG entity management prototype is also presented. The paper concludes with challenges, lessons learned, and next steps.

The moral, the political and social licence in digitally‐driven family policy and intervention: Parents negotiating experiential knowledge and ‘other’ families

AbstractThe article provides a conceptually informed empirical critique of the pursuit of social licence as a warrant for data linkage and predictive analytics in the field of family policy intervention. It draws on research focusing on parental views of digitally‐driven family governance in the United Kingdom. We identify the notion of consensus that undergirds the concept of social licence that acts to obscure inequalities and silence conflict, and to reframe digital surveillance and prediction as a moral rather than political issue. Using focus group and individual interview material, we show how parents assert professional or lay experiential knowledges in making judgements about the legitimacy of and trust in operational data technologies, involving struggles between positionings as parents like ‘us’ and ‘other’ parents. We demonstrate how parents have different leverages from these unequal and morally charged social locations. Inevitably, the application of social licence in the domain of digital family policy and intervention is fractured by entrenched social divisions and inequalities.

Digital Health Needs and Preferences During Pregnancy and the Postpartum Period: Mixed Methods Study.

Digital health is increasingly used to meet the needs of perinatal people, with estimates of pregnancy-related internet use ranging from 90% to 97% of pregnant people. As digital health takes on greater importance during the perinatal period, it is essential that providers and developers of digital health content understand why perinatal people use these resources and the features that enhance their experience. However, gaps remain in understanding the content that is most helpful and how the platforms are navigated. Learning directly from perinatal people about their needs will help ensure alignment between perinatal needs and available content. This formative study aims to identify the reasons why perinatal people use digital health resources; the features of the digital health platforms that are of greatest importance to them; and how these differ by perinatal stage (pregnancy vs post partum), mental health conditions, parity, and demographics (race and ethnicity). This mixed methods study used interviews; surveys; and secondary data on demographic, health, and pregnancy characteristics to identify the digital health needs and preferences of pregnant and postpartum people who used the Maven digital health platform in the United States during their pregnancy or postpartum period. The interviews informed the content of the surveys and provided additional insights and examples for interpreting the survey results. The surveys were used to collect data from a sample of Maven users, and the results were linked to the secondary data set. The interviews were thematically analyzed, and survey data were analyzed using descriptive statistics and stratified by parity, race, and mental health status. Overall, 13 people were interviewed (including n=4, 31% pilot interviews), and 147 pregnancy and 110 postpartum survey respondents completed the surveys and had linkable secondary data. Top reasons for using digital health resources during pregnancy were to (1) know what is normal or typical during pregnancy, (2) have access to a health care provider when needed, and (3) know how the baby is developing. Top reasons for postpartum use were to (1) help with breastfeeding, (2) know what normal baby development is, and (3) help with the baby's health issues. Top platform features during pregnancy and the postpartum period were (1) credible and trustworthy information and providers, (2) nonjudgmental information and support, and (3) no cost to the user. In general, more reasons for using digital resources were identified as extremely important during pregnancy compared with post partum. The results showed minor variations across strata. This formative research found minor differences in digital resource needs and preferences across user characteristics among perinatal people in the United States. Future work should examine whether there are variations in interests within topics by user characteristics, which may provide additional opportunities to better meet user needs.

A systematic review and meta-analysis of data linkage between motor vehicle crash and hospital-based datasets

Motor vehicle crash data linkage has emerged as a vital tool to better understand the injury outcomes and the factors contributing to crashes. This systematic review and meta-analysis aims to explore the existing knowledge on data linkage between motor vehicle crashes and hospital-based datasets, summarize and highlight the findings of previous studies, and identify gaps in research. A comprehensive and systematic search of the literature yielded 54 studies for a qualitative analysis, and 35 of which were also considered for a quantitative meta-analysis. Findings highlight a range of viable methodologies for linking datasets, including manual, deterministic, probabilistic, and integrative methods. Designing a linkage method that integrates different algorithms and techniques is more likely to result in higher match rate and fewer errors. Examining the results of the meta-analysis reveals that a wide range of linkage rates were reported. There are several factors beyond the approach that affect the linkage rate including the size and coverage of both datasets and the linkage variables. Gender, age, crash type, and roadway geometry at the crash site were likely to be associated with a record's presence in a linked dataset. Linkage rate alone is not the only important metric and when linkage rate is used as a metric in research, both police and hospital rates should be reported. This study also highlights the importance of examining and accounting for population and bias introduced by linking two datasets.

Studying military and Veteran health using a life-course approach: Lessons learned from a Canadian record linkage study

LAY SUMMARY The Canadian Forces Cancer and Mortality Study (CFCAMS) is an example of a study that uses the life-course approach to research. This article provides an overview of CFCAMS challenges and solutions. Institutional challenges arise from the different mandates of the Department of National Defence and Veterans Affairs Canada. These challenges were addressed by collaboration with Statistics Canada. Data-driven challenges were addressed by data linkage in a secure environment at Statistics Canada. Budget-based challenges could be addressed only for topics that aligned with funded priorities. Human-resource-related challenges include recruitment and retention of experienced personnel, and addressing these challenges is an ongoing issue. These interconnected challenges can leave gaps that result in unrealized stakeholder expectations. Policy-relevant research must incorporate these expectations. Understanding the roles and structures required to generate life-course research can lead to increased influence on policy and practice.

Population-Based Data Linkage Describing Patterns of Cancer Clinical Trial Enrollment Among Children and Adolescents.

Database linkage between cancer registries and clinical trial consortia has the potential to elucidate referral patterns of children and adolescents with newly diagnosed cancer, including enrollment into cancer clinical trials. This study's primary objective was to assess the feasibility of this linkage approach. Patients younger than 20 years diagnosed with incident cancer during 2012-2017 in the Kentucky Cancer Registry (KCR) were linked with patients enrolled in a Children's Oncology Group (COG) study. Matched patients between databases were described by sex, age, race and ethnicity, geographical location when diagnosed, and cancer type. Logistic regression modeling identified factors associated with COG study enrollment. Timeliness of patient identification by KCR was reported through the Centers for Disease Control and Prevention's Early Case Capture (ECC) program. Of 1,357 patients reported to KCR, 47% were determined by matching to be enrolled in a COG study. Patients had greater odds of enrollment if they were age 0-4 years (v 15-19 years), reported from a COG-affiliated institution, and had renal cancer, neuroblastoma, or leukemia. Patients had lower odds of enrollment if Hispanic (v non-Hispanic White) or had epithelial (eg, thyroid, melanoma) cancer. Most (59%) patients were reported to KCR within 10 days of pathologic diagnosis. Linkage of clinical trial data with cancer registries is a feasible approach for tracking patient referral and clinical trial enrollment patterns. Adolescents had lower enrollment compared with younger age groups, independent of cancer type. Population-based early case capture could guide interventions designed to increase cancer clinical trial enrollment.

Examining the quality and population representativeness of linked survey and administrative data: guidance and illustration using linked 1958 National Child Development Study and Hospital Episode Statistics data.

Recent years have seen an increase in linkages between survey and administrative data. It is important to evaluate the quality of such data linkages to discern the likely reliability of ensuing research. Evaluation of linkage quality and bias can be conducted using different approaches, but many of these are not possible when there is a separation of processes for linkage and analysis to help preserve privacy, as is typically the case in the UK (and elsewhere). We aimed to describe a suite of generalisable methods to evaluate linkage quality and population representativeness of linked survey and administrative data which remain tractable when users of the linked data are not party to the linkage process itself. We emphasise issues particular to longitudinal survey data throughout. Our proposed approaches cover several areas: i) Linkage rates, ii) Selection into response, linkage consent and successful linkage, iii) Linkage quality, and iv) Linked data population representativeness. We illustrate these methods using a recent linkage between the 1958 National Child Development Study (NCDS; a cohort following an initial 17,415 people born in Great Britain in a single week of 1958) and Hospital Episode Statistics (HES) databases (containing important information regarding admissions, accident and emergency attendances and outpatient appointments at NHS hospitals in England). Our illustrative analyses suggest that the linkage quality of the NCDS-HES data is high and that the linked sample maintains an excellent level of population representativeness with respect to the single dimension we assessed. Through this work we hope to encourage providers and users of linked data resources to undertake and publish thorough evaluations. We further hope that providing illustrative analyses using linked NCDS-HES data will improve the quality and transparency of research using this particular linked data resource.

Identifying employee, workplace and population characteristics associated with COVID-19 outbreaks in the workplace: a population-based study

ObjectivesTo identify risk factors that contribute to outbreaks of COVID-19 in the workplace and quantify their effect on outbreak risk.MethodsWe identified outbreaks of COVID-19 cases in the workplace and investigated...

Understanding health care pathways of patients with sepsis: protocol of a mixed-methods analysis of health care utilization, experiences, and needs of patients with and after sepsis

BackgroundSepsis is associated with about 20% of deaths worldwide. It often presents with non-specific initial symptoms, making its emergency treatment an interdisciplinary and cross-sectoral challenge. Three in four sepsis survivors suffers from new cognitive, psychological, or physical sequelae for which specific treatment concepts are scarce. The AVENIR project aims to improve the understanding of patient pathways, and subjective care experiences and needs along the entire healthcare pathway before, with and after sepsis. Based on this, concrete recommendations for the organization of care and patient information materials will be developed with close patient participation.MethodsMixed-methods study including (1) analysis of anonymized nationwide health claims data from Germany, (2) linkage of health claims data with patient care reports (PCR) of emergency medical services from study regions in two federal states within Germany, and (3) qualitative exploration of the patient, relative, and care provider perspective on sepsis care. In (1), we analyze inpatient and outpatient health care utilization until 30 days pre-sepsis; clinical sepsis care including intra- and inter-hospital transfers; and rehabilitation, inpatient and outpatient aftercare of sepsis survivors as well as costs for health care utilization until 24 months post-sepsis. We attempt to identify survivor classes with similar health care utilization by Latent Class Analyses. In (2), PCR are linked with health claims data to establish a comprehensive database outlining care pathways for sepsis patients from pre-hospital to follow-up. We investigate e.g., whether correct initial assessment is associated with acute (e.g., same-day lethality) and long-term (e.g., new need for care, long-term mortality) outcomes of patients. We compare the performance of sepsis-specific screening tools such as qSOFA, NEWS-2 or PRESEP in the pre-clinical setting. In (3), semi-structured interviews as well as synchronous and asynchronous online focus groups are conducted and analyzed using qualitative content analyses techniques.DiscussionThe results of the AVENIR study will contribute to a deeper understanding of sepsis care pathways in Germany. They may serve as a base for improvements and innovations in sepsis care, that in the long-term can contribute to reduce the personal, medical, and societal burden of sepsis and its sepsis sequelae.Trial registrationRegistered at German Clinical Trial Register (ID: DRKS00031302, date of registration: 5th May 2023).

Police and hospital data linkage for traffic injury surveillance: A systematic review

This systematic review examines studies of traffic injury that involved linkage of police crash data and hospital data and were published from 1994 to 2023 worldwide in English. Inclusion and exclusion criteria were the basis for selecting papers from PubMed, Web of Science, and Scopus, and for identifying additional relevant papers using PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) and supplementary snowballing (n = 60). The selected papers were reviewed in terms of research objectives, data items and sample size included, temporal and spatial coverage, linkage methods and software tools, as well as linkage rates and most significant findings. Many studies found that the number of clinically significant road injury cases was much higher according to hospital data than crash data. Under-estimation of cases in crash data differs by road user type, pedestrian cases commonly being highly under-counted. A limited number of the papers were from low- and middle-income countries. The papers reviewed lack consistency in what was reported and how, which limited comparability.

Investigating methods of sharing data between police, health, education, and social services: Semi-structured interviews with police service areas in Wales

The Crime and Disorder Act (1998) requires the police, local authorities, NHS, and other organisations to share intelligence and collectively work to reduce violent crime. This paper aimed to explore opinions on linking police data with other agency data. Interviews were undertaken with individuals from police forces in Wales, UK. Barriers to sharing data with other organisations involve differences in the systems used to store police data and uncertainties around what is allowed to be shared. Overcoming barriers would allow data linkage across organisations leading to deeper insights into the causes of violence, and therefore intelligence that supports crime prevention. Background The Crime and Disorder Act of 1998 requires the police, local authorities, the NHS, and other organisations to work together on collective approaches to reduce crime and to analyse shared data to inform resource allocation decisions. Data sharing has been conducted on a per-project basis, but it is rare for whole population data to be linked across organisations. The purpose of this study was to investigate the feasibility of linking national data from the police with national data from other agencies including health data from General Practitioners, hospitals, and Emergency Departments (EDs). In addition, this study explored the views and opinions from police service areas in Wales on using a single software system to cover all police service areas for public protection purposes and to facilitate sharing data with other agencies. Methods Semi-structured interviews were conducted with 36 individuals from the 4 police services in Wales along with representatives from the Violence Prevention Unit (VPU) and the Police Liaison Unit (PLU). The interviews were analysed using codebook thematic analysis to generate key themes from qualitative responses. Results Two key themes and seven sub-themes were developed from the qualitative data. The key themes include the following: (1) Opinions on the systems used in the police for public protection including thoughts on the current system and moving to using one system. (2) Opinions on data sharing including what data should be shared, benefits of data sharing, barriers to data sharing (within the police and across organisations), and overcoming barriers to data sharing. Interviewees identified that a proprietary relational database, Niche, was the most used system for public protection, was highly regarded, and individuals felt that if all forces moved to the same system this would be a positive development. However, work needs to be undertaken to ensure there is a minimum dataset entered in each area as there is high variability in data quality. Barriers included not knowing what was possible to share and fear of sharing. An unambiguous framework endorsed at a high level of what data should and shouldn’t be shared was recommended to overcome this. Conclusions The main barriers to shared police data included a lack of clarity around data governance and what is appropriate to share. It was felt that sharing should be the default position and with support these barriers could be removed. Data sharing between agencies would require high-level support and unambiguous guidelines as to what data can be shared, with whom, and in what format.

Population-Based Biobanking.

Population-based biobanking is an essential element of medical research that has grown substantially over the last two decades, and many countries are currently pursuing large national biobanking initiatives. The rise of individual biobanks is paralleled by various networking activities in the field at both the national and international level, such as BBMRI-ERIC in the EU. A significant contribution to population-based biobanking comes from large cohort studies and national repositories, including the United Kingdom Biobank (UKBB), the CONSTANCES project in France, the German National Cohort (NAKO), LifeLines in the Netherlands, FinnGen in Finland, and the All of Us project in the U.S. At the same time, hospital-based biobanking has also gained importance in medical research. We describe some of the scientific questions that can be addressed particularly well by the use of population-based biobanks, including the discovery and calibration of biomarkers and the identification of molecular correlates of health parameters and disease states. Despite the tremendous progress made so far, some major challenges to population-based biobanking still remain, including the need to develop strategies for the long-term sustainability of biobanks, the handling of incidental findings, and the linkage of sample-related and sample-derived data to other relevant resources.

Impact of physical activity on disability-free and disabled life expectancies in middle-aged and older adults: Data from the healthy aging longitudinal study in Taiwan.

Leisure-time physical activity (LTPA) promotes healthy aging; however, data on work-related physical activity (WPA) are inconsistent. This study was conducted to examine the disability-free life expectancy (DFLE) and disabled life expectancy (DLE) across physical activity levels, with a focus on WPA, in middle-aged and older adults. Data from 5663 community-dwelling participants aged ≥55 years and enrolled in the Healthy Aging Longitudinal Study in Taiwan were evaluated. Energy expenditures from LTPA and WPA were calculated from baseline questionnaires and categorized into sex-specific cutoffs. Disability was based on repeat measures of participants' activities of daily living and instrumental activities of daily living. Mortality was confirmed via data linkage with the Death Certificate database. DFLE and DLE were estimated from discrete-time multistate life-table models. At age 65, women with low WPA had a DLE of 2.88 years (95% confidence interval [CI], 1.67-4.08), which was shorter than that of women without WPA (DLE, 5.24 years; 95% CI, 4.65-5.83) and with high WPA (DLE, 4.01 years; 95% CI, 2.69-5.34). DFLE and DLE were similar across WPA levels in men. DFLE tended to increase as the LTPA increased in men and women. Women with low WPA had shorter DLE than did those with no or high WPA. To reduce the risks of disability associated with physical activity, public policy should advocate for older people to watch the type, amount, and intensity of their activities as these may go ignored during WPA. Geriatr Gerontol Int 2024; 24: 229-239.

Social Participation of People with Chronic Mental Health Needs: Building Horizontal and Vertical Forms of Social Capital

Social participation is positively related to mental health recovery and wellbeing, yet people with mental health problems are often socially isolated. This article investigates how social participation was incorporated into an Australian-integrated program that aimed to improve the wellbeing of people with chronic mental health needs. The data are from a longitudinal evaluation of the integrated program, including data linkage (5533 participants) and interviews (111). The paper uses concepts from the network perspective of social capital (bonding, bridging, linking, horizontal, and vertical) as lenses to re-examine the evaluation’s findings about the consumers’ social participation in life areas (social, leisure, and productive) facilitated by the program. This social capital perspective offers a lens to examine the breadth and intensity of participation experienced by the consumers taking part in the support program. The article adds to the literature about how service providers can improve social participation and therefore consumers’ opportunities for recovery and wellbeing. The analyses found that the support increased people’s social interaction and their capacity in the community. Their social interaction was mostly with other people in the service. Often their interactions in the community were only transactional. Few consumers participated in activities in productive life areas, and few of the activities promoted vertical social capital in social networks outside the service. The implications are that service providers need greater attention on facilitating a variety of social participation activities that can extend mental health consumers’ horizontal and vertical social capital and so further contribute to their current and future recovery and wellbeing.