scholarly journals Using routinely collected health data for surveillance, quality improvement and research: Framework and key questions to assess ethics, privacy and data access

2016 ◽  
Vol 22 (4) ◽  
pp. 426-432 ◽  
Author(s):  
Simon De Lusignan ◽  
Harshana Liyanage ◽  
Concetta Tania Di Iorio ◽  
Tom Chan ◽  
Siaw-Teng Liaw
2021 ◽  
Vol 28 (1) ◽  
pp. e100294
Author(s):  
Suzy Gallier ◽  
Gary Price ◽  
Hina Pandya ◽  
Gillian McCarmack ◽  
Chris James ◽  
...  

IntroductionHealth Data Research UK designated seven UK-based Hubs to facilitate health data use for research. PIONEER is the Hub in Acute Care. PIONEER delivered workshops where patients/public citizens agreed key principles to guide access to unconsented, anonymised, routinely collected health data. These were used to inform the protocol.MethodsThis paper describes the PIONEER infrastructure and data access processes. PIONEER is a research database and analytical environment that links routinely collected health data across community, ambulance and hospital healthcare providers. PIONEER aims ultimately to improve patient health and care, by making health data discoverable and accessible for research by National Health Service, academic and commercial organisations. The PIONEER protocol incorporates principles identified in the public/patient workshops. This includes all data access requests being reviewed by the Data Trust Committee, a group of public citizens who advise on whether requests should be supported prior to licensed access.Ethics and disseminationEast Midlands–Derby REC (20/EM/0158): Confidentiality Advisory Group (20/CAG/0084). www.PIONEERdatahub.co.uk


2022 ◽  
Vol 11 (1) ◽  
pp. e001491
Author(s):  
Taylor McGuckin ◽  
Katelynn Crick ◽  
Tyler W Myroniuk ◽  
Brock Setchell ◽  
Roseanne O Yeung ◽  
...  

High-quality data are fundamental to healthcare research, future applications of artificial intelligence and advancing healthcare delivery and outcomes through a learning health system. Although routinely collected administrative health and electronic medical record data are rich sources of information, they have significant limitations. Through four example projects from the Physician Learning Program in Edmonton, Alberta, Canada, we illustrate barriers to using routinely collected health data to conduct research and engage in clinical quality improvement. These include challenges with data availability for variables of clinical interest, data completeness within a clinical visit, missing and duplicate visits, and variability of data capture systems. We make four recommendations that highlight the need for increased clinical engagement to improve the collection and coding of routinely collected data. Advancing the quality and usability of health systems data will support the continuous quality improvement needed to achieve the quintuple aim.


Author(s):  
Joia S. Mukherjee

Quality data are necessary to make good decisions in health delivery for both individuals and populations. Data can be used to improve care and achieve equity. However, systems for health data management were historically weak in most impoverished countries. Health data are not uncommonly compiled in stacks of poorly organized paper records. Efforts to streamline and improve health information discussed in this chapter include patient-held booklets, demographic health surveys, and the use of common indicators. This chapter also focuses on the evolution of medical records, including electronic systems. The use of data for monitoring, evaluation, and quality improvement is explained. Finally, this chapter reviews the use of frameworks—such as logic models and log frames—for program planning, evaluation, and improvement.


2016 ◽  
Vol Volume 8 ◽  
pp. 389-392 ◽  
Author(s):  
Stuart Nicholls ◽  
Sinead Langan ◽  
Henrik Toft Sørensen ◽  
Irene Petersen ◽  
Eric Benchimol

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
L.A Barnes ◽  
A Eng ◽  
M Corbin ◽  
H.J Denison ◽  
A t'Mannetje ◽  
...  

Abstract Background/Introduction Occupation is a poorly characterised risk factor for cardiovascular disease (CVD), with females and minority populations particularly under-represented in research. There is also a lack of longitudinal studies using detailed health data that does not rely on self-reports. Purpose This study aimed to address these gaps by assessing the association between a range of occupational groups and ischaemic heart disease (IHD) in New Zealand (NZ), through linkage of population-based occupational surveys to routinely collected health data. Half of the study population were females and 40% were indigenous Māori (who comprise 15% of the total 4.8 million NZ population), which enabled sex and ethnicity-specific aspects of the relationship between occupation and IHD to be assessed. Methods Two probability-based sample surveys of the NZ adult population (New Zealand Workforce Survey (NZWS); 2004–2006; n=3003) and of the Māori population (NZWS Māori; 2009–2010; n=2107), for which detailed occupational histories and lifestyle factors were collected, were linked with routinely collected health data available through Statistics NZ. Cox regression was used to calculate hazard ratios (HR) for “ever-worked” in any one of nine major occupational groups, with “never worked” in that occupational group defined as the reference group. Analyses were controlled for age, deprivation and smoking, and stratified by sex and ethnicity. Results The strongest associations were found for “plant/machine operators and assemblers” and “elementary workers”, particularly among female Māori (HR 2.19, 95% CI 1.16–4.13 and HR 2.03, 1.07–3.82 respectively). In contrast, inverse associations with IHD across all groups were observed for “technicians and associate professionals”, which was significant for NZWS males (HR 0.52, 0.32–0.84). There were some sex and ethnic differences, particularly for “clerks”, where a positive association was found for NZWS males (HR 1.81, 1.19–2.74), whilst an inverse association was observed for Māori females (HR 0.42, 0.22–0.82). Duration analyses (≤2 years, 2–10 years and 10+ years) showed significant dose-response trends for “clerks” in NZWS males, and “plant/machine operators and assemblers” and “elementary workers” in Māori females. Further adjustments for other potential confounders such diabetes mellitus, hypertension and high cholesterol did not affect the results. Conclusion Associations between occupation and IHD differed significantly across occupational groups and between sexes and ethnicities, even within the same occupational groups. This suggests that results may not be generalised across these groups and occupational interventions to reduce IHD risk may therefore need different approaches depending on the population and specific groups of interest. Funding Acknowledgement Type of funding source: Other. Main funding source(s): Health Research Council (HRC) of New Zealand


Author(s):  
Larry Svenson

BackgroundThe Province of Alberta, Canada, maintains a mature data environment with linkable administrative and clinical data dating back up to 30 years. Alberta has a single payer, publicly funded and administered, universal health system, which maintains multiple administrative data sets. Main AimThe main aim of the strategy is to fully maximize the data assets in the province to drive health system health system innovation, with a focus on improving health outcomes and quality of life. Methods/ApproachThe Alberta Ministry of Health has created the Secondary Use Data Access (SUDA) initiative to leverage its administrative health data. SUDA envisions strengthening partnerships between the public and private sectors through two main data access approaches. The first is direct access to de-identified data held within the Alberta Health data warehouse by key health system stakeholders (e.g. academic institutions, professional associations, regulatory colleges). The second is indirect access to private and not-for-profit organizations, using a data access safe haven (DASH) approach. Indirect access is achieved through private sector investments to a trusted third party that hires analysts placed within the Ministry of Health offices. ResultsStaffing agreements and privacy impact assessments are in place. Indirect access includes a multiple stakeholder steering committee to vet and prioritize projects. Private and not-for-profit stakeholders do not have access to raw data, but rather receive access to aggregated data and statistical models. All data disclosures are done by Ministry staff to ensure compliance with Alberta's Health Information Act. Direct access has been established for one professional organization and one academic institution, with access restricted to de-identified data. ConclusionThe Secondary Use Data Access initiative uses a safe haven approach to leveraging data to provide a more secure approach to data access. It reduces the need to provision data outside of the data warehouse while improving timely access to data. The approach provides assurances that people's health information is held secure, while also being used to create health system improvements.


Author(s):  
Shirley Wong ◽  
Victoria Schuckel ◽  
Simon Thompson ◽  
David Ford ◽  
Ronan Lyons ◽  
...  

IntroductionThere is no power for change greater than a community discovering what it cares about.1 The Health Data Platform (HDP) will democratize British Columbia’s (population of approximately 4.6 million) health sector data by creating common enabling infrastructure that supports cross-organization analytics and research used by both decision makers and cademics. HDP will provide streamlined, proportionate processes that provide timelier access to data with increased transparency for the data consumer and provide shared data related services that elevate best practices by enabling consistency across data contributors, while maintaining continued stewardship of their data. HDP will be built in collaboration with Swansea University following an agile pragmatic approach starting with a minimum viable product. Objectives and ApproachBuild a data sharing environment that harnesses the data and the understanding and expertise about health data across academe, decision makers, and clinicians in the province by: Enabling a common harmonized approach across the sector on: Data stewardship Data access Data security and privacy Data management Data standards To: Enhance data consumer data access experience Increase process consistency and transparency Reduce burden of liberating data from a data source Build trust in the data and what it is telling us and therefore the decisions made Increase data accessibility safely and responsibly Working within the jurisdiction’s existing legislation, the Five Safes Privacy and Security Framework will be implemented, tailored to address the requirements of data contributors. ResultsThe minimum viable product will provide the necessary enabling infrastructure including governance to enable timelier access, safely to administrative data to a limited set of data consumers. The MVP will be expanded with another release planned for early 2021. Conclusion / ImplicationsCollaboration with Swansea University has enabled BC to accelerate its journey to increasing timelier access to data, safely and increasing the maturity of analytics by creating the enabling infrastructure that promotes collaboration and sharing of data and data approaches. 1 Margaret Wheatley


2019 ◽  
Vol 22 (6) ◽  
pp. 647-650
Author(s):  
Thomas Nilsen ◽  
Ingunn Brandt ◽  
Jennifer R. Harris

AbstractThe Norwegian Twin Registry (NTR) is maintained as a research resource that was compiled by merging several panels of twin data that were established for research into physical and mental health, wellbeing and development. NTR is a consent-based registry. Where possible, data that were collected in previous studies are curated for secondary research use. A particularly valuable potential benefit associated with the Norwegian twin data lies in the opportunities to expand and enhance the data through record linkage to nationwide registries that cover a wide array of health data and other information, including socioeconomic factors. This article provides a brief description of the current NTR sample and data collections, information about data access procedures and an overview of the national registries that can be linked to the NTR for research projects.


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