Lifetime risk of undergoing surgery for pelvic organ prolapse.

https://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(11)61087-8.pdf

Child maltreatment : variation in trends and policies in six developed countries

Linked administrative databases offer a powerful resource for studying important public health issues. Methods developed and implemented in several jurisdictions across the globe have achieved high-quality linkages for conducting health and social research without compromising confidentiality. Key data available for linkage include health services utilization, population registries, place of residence, family ties, educational outcomes, and use of social services. Linking events for large populations of individuals across disparate sources and over time permits a range of research possibilities, including the capacity to study low-prevalence exposure-disease associations, multiple outcome domains within the same cohort of individuals, service utilization and chronic disease patterns, and life course and transgenerational transmission of health. Limited information on variables such as individual-level socioeconomic status (SES) and social supports is outweighed by strengths that include comprehensive foll...

https://www.annualreviews.org/doi/pdf/10.1146/annurev-publhealth-031210-100700

Administrative Record Linkage as a Tool for Public Health Research

https://www.pure.ed.ac.uk/ws/files/25120955/25008401._PFV._GOA..pdf

The role of administrative data in the big data revolution in social science research

The past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practices and systems of governance. Given the growing international interest in this area this systematic review and thematic synthesis represents a timely review of current evidence. It highlights the key factors influencing public responses as well as important areas for further research. This paper reports a systematic review and thematic synthesis of qualitative studies examining public attitudes towards the sharing or linkage of health data for research purposes. Twenty-five studies were included in the review. The included studies were conducted primarily in the UK and North America, with one study set in Japan, another in Sweden and one in multiple countries. The included studies were conducted between 1999 and 2013 (eight studies selected for inclusion did not report data collection dates). The qualitative methods represented in the studies included focus groups, interviews, deliberative events, dialogue workshops and asynchronous online interviews. Key themes identified across the corpus of studies related to the conditions necessary for public support/acceptability, areas of public concern and implications for future research. The results identify a growing body of evidence pointing towards widespread general—though conditional—support for data linkage and data sharing for research purposes. Whilst a variety of concerns were raised (e.g. relating to confidentiality, individuals’ control over their data, uses and abuses of data and potential harms arising) in cases where participants perceived there to be actual or potential public benefits from research and had trust in the individuals or organisations conducting and/or overseeing data linkage/sharing, they were generally supportive. The studies also find current low levels of awareness about existing practices and uses of data. Whilst the results indicate widespread (conditional) public support for data sharing and linkage for research purposes, a range of concerns exist. In order to ensure public support for future research uses of data greater awareness raising combined with opportunities for public engagement and deliberation are needed. This will be essential for ensuring the legitimacy of future health informatics research and avoiding further public controversy.

https://link.springer.com/content/pdf/10.1186%2Fs12910-016-0153-x.pdf

Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies

Objectives: The report describes the strategic design, steps to full implementation and outcomes achieved by the Western Australian Data Linkage System (WADLS), instigated in 1995 to link up to 40 years of data from over 30 collections for an historical population of 3.7 million. Staged development has seen its expansion, initially from a linkage key to local health data sets, to encompass links to national and local health and welfare data sets, genealogical links and spatial references for mapping applications. Applications: The WADLS has supported over 400 studies with over 250 journal publications and 35 graduate research degrees. Applications have occurred in health services utilisation and outcomes, aetiologic research, disease surveillance and needs analysis, and in methodologic research. Benefits: Longitudinal studies have become cheaper and more complete; deletion of duplicate records and correction of data artifacts have enhanced the quality of information assets; data linkage has conserved patient privacy; community machinery necessary for organised responses to health and social problems has been exercised; and the commercial return on research infrastructure investment has exceeded 1000%. Most importantly, there have been unbiased contributions to medical knowledge and identifiable advances in population health arising from the

/pdf/a-decade-of-data-linkage-in-western-australia-strategic-51tfzot74c.pdf

Merran Smith

Papers

A decade of data linkage in Western Australia: strategic design, applications and benefits of the WA data linkage system

Multi-jurisdictional linkage in Australia: proving a concept.

International Health Data Linkage Network