Technical challenges of providing record linkage services for research

Background: Record linkage techniques are widely used to enable health researchers to gain event based longitudinal information for entire populations. The task of record linkage is increasingly being undertaken by specialised linkage units (SLUs). In addition to the complexity of undertaking probabilistic record linkage, these units face additional technical challenges in providing record linkage ‘as a service’ for research. The extent of this functionality, and approaches to solving these issues, has had little focus in the record linkage literature. Few, if any, of the record linkage packages or systems currently used by SLUs include the full range of functions required. Methods: This paper identifies and discusses some of the functions that are required or undertaken by SLUs in the provision of record linkage services. These include managing routine, on-going linkage; storing and handling changing data; handling different linkage scenarios; accommodating ever increasing datasets. Automated linkage processes are one way of ensuring consistency of results and scalability of service. Results: Alternative solutions to some of these challenges are presented. By maintaining a full history of links, and storing pairwise information, many of the challenges around handling ‘open’ records, and providing automated managed extractions are solved. A number of these solutions were implemented as part of the development of the National Linkage System (NLS) by the Centre for Data Linkage (part of the Population Health Research Network) in Australia.Conclusions: The demand for, and complexity of, linkage services are growing. This presents as a challenge to SLUs as they seek to service the varying needs of dozens of research projects annually. Linkage units need to be both flexible and scalable to meet this demand. It is hoped the solutions presented here can help mitigate these difficulties

How Registries Can Help Performance Measurement Improve Care

Suggests ways to better utilize databases of clinical information to evaluate care processes and outcomes and improve measurements of healthcare quality and costs, comparative clinical effectiveness research, and medical product safety surveillance

Commodities and Linkages: Meeting the Policy Challenge

The results of detailed empirical enquiry into the nature and determinants of the breadth and depth of linkages in and out of the commodities sector in eight SSA countries (Angola, Botswana, Gabon, Ghana, Nigeria, South Africa Tanzania, and Zambia) and six sectors (copper, diamonds, gold, oil and gas, mining services and timber) has shown extensive scope for industrial development (MMCP DP 13, 2011). A primary conclusion of this research was that policy in both the private and public realm was a prime factor holding back the development of linkages. Addressing this problem requires the closing of three sets of misalignments between policy and practice – within the corporate sector, within the public sector, and between the public sector and other stakeholders involved in linkage development. In addition, specific policies need to be developed, monitored and implemented in relation to the three contextual drivers of linkages from the commodity sector – skills and capabilities, infrastructure and policies towards ownership

Implementation pathway report: Community Resource Person An intervention by the Technical Support Unit Uttar Pradesh, India, February 2015

A report describing the methodology behind an implementation pathway for the Community Resource Person innovation being implemented by the Technical Support Unit (a large-scale collaboration between the Bill & Melinda Gates Foundation and the Uttar Pradesh government) in Uttar Pradesh, India

Cancer Informatics for Cancer Centers (CI4CC): Building a Community Focused on Sharing Ideas and Best Practices to Improve Cancer Care and Patient Outcomes.

Cancer Informatics for Cancer Centers (CI4CC) is a grassroots, nonprofit 501c3 organization intended to provide a focused national forum for engagement of senior cancer informatics leaders, primarily aimed at academic cancer centers anywhere in the world but with a special emphasis on the 70 National Cancer Institute-funded cancer centers. Although each of the participating cancer centers is structured differently, and leaders' titles vary, we know firsthand there are similarities in both the issues we face and the solutions we achieve. As a consortium, we have initiated a dedicated listserv, an open-initiatives program, and targeted biannual face-to-face meetings. These meetings are a place to review our priorities and initiatives, providing a forum for discussion of the strategic and pragmatic issues we, as informatics leaders, individually face at our respective institutions and cancer centers. Here we provide a brief history of the CI4CC organization and meeting highlights from the latest CI4CC meeting that took place in Napa, California from October 14-16, 2019. The focus of this meeting was "intersections between informatics, data science, and population science." We conclude with a discussion on "hot topics" on the horizon for cancer informatics

Ethical issues of electronic patient data and informatics in clinical trial settings

The field of cancer bio-informatics unites the disciplines of scientific and clinical research withclinical practice and the treatment of individual patients. There is a need to study patients andsometimes their families, over many decades, to follow disease progress and long-term outcomes.This may require research teams to access the routinely-collected health data from generalpractice and hospital health records, prior to and after the cancer diagnosis is made. This clinicalinformation will increasingly include data provided by patients or acquired from them throughwearable devices that can monitor or deliver treatment, and data acquired from genetic relativesof the patient.All of these data, whether explicitly collected for the purpose of a clinical study, or routinelycollected as part of a patient?s life-time healthcare journey, are personal health data. There areethical and legal requirements to manage these data with care. This chapter explores the ethicalrequirements for collecting, holding, analysing and sharing personal health data, and thelegislation covering such activities

Designing privacy for scalable electronic healthcare linkage

A unified electronic health record (EHR) has potentially immeasurable benefits to society, and the current healthcare industry drive to create a single EHR reflects this. However, adoption is slow due to two major factors: the disparate nature of data and storage facilities of current healthcare systems and the security ramifications of accessing and using that data and concerns about potential misuse of that data. To attempt to address these issues this paper presents the VANGUARD (Virtual ANonymisation Grid for Unified Access of Remote Data) system which supports adaptive security-oriented linkage of disparate clinical data-sets to support a variety of virtual EHRs avoiding the need for a single schematic standard and natural concerns of data owners and other stakeholders on data access and usage. VANGUARD has been designed explicit with security in mind and supports clear delineation of roles for data linkage and usage

The Digitalisation of African Agriculture Report 2018-2019

An inclusive, digitally-enabled agricultural transformation could help achieve meaningful livelihood improvements for Africa’s smallholder farmers and pastoralists. It could drive greater engagement in agriculture from women and youth and create employment opportunities along the value chain. At CTA we staked a claim on this power of digitalisation to more systematically transform agriculture early on. Digitalisation, focusing on not individual ICTs but the application of these technologies to entire value chains, is a theme that cuts across all of our work. In youth entrepreneurship, we are fostering a new breed of young ICT ‘agripreneurs’. In climate-smart agriculture multiple projects provide information that can help towards building resilience for smallholder farmers. And in women empowerment we are supporting digital platforms to drive greater inclusion for women entrepreneurs in agricultural value chains

Balancing Access to Data And Privacy. A review of the issues and approaches for the future

Access to sensitive micro data should be provided using remote access data enclaves. These enclaves should be built to facilitate the productive, high-quality usage of microdata. In other words, they should support a collaborative environment that facilitates the development and exchange of knowledge about data among data producers and consumers. The experience of the physical and life sciences has shown that it is possible to develop a research community and a knowledge infrastructure around both research questions and the different types of data necessary to answer policy questions. In sum, establishing a virtual organization approach would provided the research community with the ability to move away from individual, or artisan, science, towards the more generally accepted community based approach. Enclave should include a number of features: metadata documentation capacity so that knowledge about data can be shared; capacity to add data so that the data infrastructure can be augmented; communication capacity, such as wikis, blogs and discussion groups so that knowledge about the data can be deepened and incentives for information sharing so that a community of practice can be built. The opportunity to transform micro-data based research through such a organizational infrastructure could potentially be as far-reaching as the changes that have taken place in the biological and astronomical sciences. It is, however, an open research question how such an organization should be established: whether the approach should be centralized or decentralized. Similarly, it is an open research question as to the appropriate metrics of success, and the best incentives to put in place to achieve success.Methodology for Collecting, Estimating, Organizing Microeconomic Data