19 results on '"Secondary health data"'
Search Results
2. Enablers and barriers to the secondary use of health data in Europe: general data protection regulation perspective
- Author
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Jakov Vukovic, Damir Ivankovic, Claudia Habl, and Jelena Dimnjakovic
- Subjects
GDPRGeneral Data Protection Regulation ,Secondary health data ,Data sharing ,Public aspects of medicine ,RA1-1270 - Abstract
Abstract Background The General Data Protection Regulation is a regulation in EU law on data protection and privacy in the European Union. We aimed to provide an overview of the General Data Protection Regulation (GDPR) enablers and barriers to the secondary use of health data in Europe from the research we conducted in the Joint Action InfAct (Information for Action!) WP10 Assessing and piloting interoperability for public health policy, as well as to provide an example of a national-level case study on experiences with secondary use of health data and GDPR on an example of the Austrian COVID-19 data platform. Methods We have identified a number of European initiatives, projects and organizations that have dealt with cross-border health data sharing, linkage and management by desk research and we conducted 17 semi-structured in-depth interviews and analyzed the interview transcripts by framework analysis. Results GDPR was seen as an enabler to the secondary use of health data in Europe when it comes to user rights over their data, pre-existing laws regarding data privacy and data sharing, sharing anonymized statistics, developing new data analysis approaches, patients` trust towards dealing with their health data and transparency. GDPR was seen as a barrier to the secondary use of health data in Europe when it comes to identifiable and individual-level data, data sharing, time needed to complete the process, workload increase, differences with local legal legislations, different (and stricter) interpretations and access to data. Conclusion The results of our analysis show that GDPR acts as both an enabler and a barrier for the secondary use of health data in Europe. More research is needed to better understand the effects of GDPR on the secondary use of health data which can serve as a basis for future changes in the regulation.
- Published
- 2022
- Full Text
- View/download PDF
3. Enablers and barriers to the secondary use of health data in Europe: general data protection regulation perspective.
- Author
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Vukovic, Jakov, Ivankovic, Damir, Habl, Claudia, and Dimnjakovic, Jelena
- Subjects
DATA security - Abstract
Background: The General Data Protection Regulation is a regulation in EU law on data protection and privacy in the European Union. We aimed to provide an overview of the General Data Protection Regulation (GDPR) enablers and barriers to the secondary use of health data in Europe from the research we conducted in the Joint Action InfAct (Information for Action!) WP10 Assessing and piloting interoperability for public health policy, as well as to provide an example of a national-level case study on experiences with secondary use of health data and GDPR on an example of the Austrian COVID-19 data platform. Methods: We have identified a number of European initiatives, projects and organizations that have dealt with cross-border health data sharing, linkage and management by desk research and we conducted 17 semi-structured in-depth interviews and analyzed the interview transcripts by framework analysis. Results: GDPR was seen as an enabler to the secondary use of health data in Europe when it comes to user rights over their data, pre-existing laws regarding data privacy and data sharing, sharing anonymized statistics, developing new data analysis approaches, patients' trust towards dealing with their health data and transparency. GDPR was seen as a barrier to the secondary use of health data in Europe when it comes to identifiable and individual-level data, data sharing, time needed to complete the process, workload increase, differences with local legal legislations, different (and stricter) interpretations and access to data. Conclusion: The results of our analysis show that GDPR acts as both an enabler and a barrier for the secondary use of health data in Europe. More research is needed to better understand the effects of GDPR on the secondary use of health data which can serve as a basis for future changes in the regulation. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
4. Pre- and Postnatal Factors Obtained from Health Records
- Author
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Ahrens, Wolfgang, Lauria, Fabio, Formisano, Annarita, Moreno, Luis A., Pigeot, Iris, Ahrens, Wolfgang, Series Editor, Pigeot, Iris, Series Editor, Bammann, Karin, editor, and Lissner, Lauren, editor
- Published
- 2019
- Full Text
- View/download PDF
5. [Secondary use of data: The promise of artificial intelligence].
- Author
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Guillot C and Combes S
- Subjects
- Humans, Delivery of Health Care organization & administration, Artificial Intelligence
- Abstract
The use of secondary healthcare data contributes to improving the healthcare system and, for the patient in particular, aims to provide better care thanks to the lessons learned from compiling the information. This article, using the example of an artificial intelligence (AI) project called Hydro, highlights the importance and challenges of cross-fertilizing different data sources, to help find solutions that enrich the healthcare offering., (Copyright © 2024 Elsevier Masson SAS. All rights reserved.)
- Published
- 2024
- Full Text
- View/download PDF
6. Multicomponent Informed Consent with Marshallese Participants.
- Author
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Purvis, Rachel S., Ayers, Britni L., Bogulski, Cari A., Kaminicki, Kyle F., Haggard-Duff, Lauren K., Riklon, Lynda A., Iban, Anita, Mejbon-Samuel, Rotha, Lakmis, Rumina, Riklon, Sheldon, Thompson, Joseph W., and McElfish, Pearl A.
- Subjects
- *
COMMUNITY-based participatory research , *HEALTH equity , *PACIFIC Islanders , *INDIGENOUS peoples - Abstract
Pacific Islanders are the second fastest-growing population in the United States; however, Pacific Islanders, and Marshallese specifically, are underrepresented in health research. A community-based participatory research (CBPR) approach was used to engage Marshallese stakeholders and build an academic-community research collaborative to conduct health disparities research. Our CBPR partnership pilot tested a multicomponent consent process that provides participants the option to control the use of their data. Consent forms used concise plain language to describe study information, including participant requirements, risks, and personal health information protections, and were available in both English and Marshallese. This study demonstrates that when provided a multicomponent consent, the vast majority of consenting study participants (89.6%) agreed to all additional options, and only five (10.4%) provided consent for some but not all options. Our description of the development and implementation of a multicomponent consent using a CBPR approach adds a specific example of community engagement and may be informative for other indigenous populations. [ABSTRACT FROM AUTHOR]
- Published
- 2021
- Full Text
- View/download PDF
7. Operational Challenges in the Use of Structured Secondary Data for Health Research
- Author
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Kelsy N. Areco, Tulio Konstantyner, Paulo Bandiera-Paiva, Rita C. X. Balda, Daniela T. Costa-Nobre, Adriana Sanudo, Carlos Roberto V. Kiffer, Mandira D. Kawakami, Milton H. Miyoshi, Ana Sílvia Scavacini Marinonio, Rosa M. V. Freitas, Liliam C. C. Morais, Monica L. P. Teixeira, Bernadette Waldvogel, Maria Fernanda B. Almeida, and Ruth Guinsburg
- Subjects
public health ,datasets as topic ,population studies in public health ,Death Certificates ,Birth Certificates ,secondary health data ,Public aspects of medicine ,RA1-1270 - Abstract
Background: In Brazil, secondary data for epidemiology are largely available. However, they are insufficiently prepared for use in research, even when it comes to structured data since they were often designed for other purposes. To date, few publications focus on the process of preparing secondary data. The present findings can help in orienting future research projects that are based on secondary data.Objective: Describe the steps in the process of ensuring the adequacy of a secondary data set for a specific use and to identify the challenges of this process.Methods: The present study is qualitative and reports methodological issues about secondary data use. The study material was comprised of 6,059,454 live births and 73,735 infant death records from 2004 to 2013 of children whose mothers resided in the State of São Paulo - Brazil. The challenges and description of the procedures to ensure data adequacy were undertaken in 6 steps: (1) problem understanding, (2) resource planning, (3) data understanding, (4) data preparation, (5) data validation and (6) data distribution. For each step, procedures, and challenges encountered, and the actions to cope with them and partial results were described. To identify the most labor-intensive tasks in this process, the steps were assessed by adding the number of procedures, challenges, and coping actions. The highest values were assumed to indicate the most critical steps.Results: In total, 22 procedures and 23 actions were needed to deal with the 27 challenges encountered along the process of ensuring the adequacy of the study material for the intended use. The final product was an organized database for a historical cohort study suitable for the intended use. Data understanding and data preparation were identified as the most critical steps, accounting for about 70% of the challenges observed for data using.Conclusion: Significant challenges were encountered in the process of ensuring the adequacy of secondary health data for research use, mainly in the data understanding and data preparation steps. The use of the described steps to approach structured secondary data and the knowledge of the potential challenges along the process may contribute to planning health research.
- Published
- 2021
- Full Text
- View/download PDF
8. [Cooperation between the Health Data Hub and the Health Data Lab at the BfArM in setting up the European Health Data Space].
- Author
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Arzideh R, Jendrossek M, and Zittlau I
- Subjects
- Germany, Computer Security, Academies and Institutes
- Abstract
In recent years, the cross-border exchange between European member states regarding the use of health data has become increasingly relevant. In order to jointly counteract the current heterogeneity and health-related challenges as well as to successively implement the vision of the European Health Data Space (EHDS) in compliance with high data protection standards, different projects with the participation of the Health Data Lab at the Federal Institute for Drugs and Medical Devices (BfArM) and the Health Data Hub have been initiated. This close German-French cooperation on the one hand creates synergies and examines challenges and possible solutions on a European level. On the other hand, the cooperation between both institutions promotes the cross-border exchange of knowledge and experience in order to jointly meet challenges and achieve goals at national and European levels., (© 2024. The Author(s).)
- Published
- 2024
- Full Text
- View/download PDF
9. Folic acid deficiency declined substantially after introduction of the mandatory fortification programme in Queensland, Australia: a secondary health data analysis.
- Author
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Slagman, Anna, Harriss, Linton, Campbell, Sandra, Muller, Reinhold, and McDermott, Robyn
- Subjects
- *
FOLIC acid , *SECONDARY analysis , *ENRICHED foods , *INDIGENOUS peoples , *OLDER people - Abstract
Objective: To investigate the prevalence of folic acid deficiency in Queensland-wide data of routine laboratory measurements, especially in high-risk sub-populations.Design: Secondary health data analysis.Setting: Analysis of routine folic acid tests conducted by Pathology Queensland (AUSLAB).Participants: Female and male persons aged 0-117 years with routine folic acid testing between 1 January 2004 and 31 December 2015. If repeat tests on the same person were conducted, only the initial test was analysed (n 291 908).Results: Overall the prevalence of folic acid deficiency declined from 7·5 % before (2004-2008) to 1·1 % after mandatory folic acid fortification (2010-2015; P < 0·001) reflecting a relative reduction of 85 %. Levels of erythrocyte folate increased significantly from a median (interquartile range) of 820 (580-1180) nmol/l in 2008 before fortification to 1020 (780-1350) nmol/l in 2010 (P < 0·001) after fortification. The prevalence of folic acid deficiency in the Indigenous population (14 792 samples) declined by 93 % (17·4 v. 1·3 %; P < 0·001); and by 84 % in non-Indigenous residents (7·0 v. 1·1 %; P < 0·001). In a logistic regression model the observed decrease of folic acid deficiency between 2008 and 2010 was found independent of gender, age and ethnicity (ORcrude = 0·20; 95 % CI 0·18, 0·23; P < 0·001; ORadjusted = 0·21; 95 % CI 0·18, 0·23; P < 0·001).Conclusions: While voluntary folic acid fortification, introduced in 1995, failed especially in high-risk subgroups, the 2009 mandatory folic acid fortification programme coincided with a substantial decrease of folic acid deficiency in the entire population. [ABSTRACT FROM AUTHOR]- Published
- 2019
- Full Text
- View/download PDF
10. Low proportions of folic acid deficiency after introduction of mandatory folic acid fortification in remote areas of northern Queensland, Australia: a secondary health data analysis.
- Author
-
Slagman, Anna, Harriss, Linton, Campbell, Sandra, Muller, Reinhold, and McDermott, Robyn
- Subjects
- *
RURAL health , *FOLIC acid , *SECONDARY analysis , *ENRICHED foods , *AREA measurement , *INDIGENOUS peoples , *CITIES & towns - Abstract
Background: Australia implemented mandatory folic acid fortification of bread-making flour in 2009. Objective: To assess the impact of folic acid fortification in remote vs. regional urban areas and Indigenous vs. non-Indigenous populations in northern Queensland. Methods: Routinely collected data on folic acid measurements in remote areas and two regional urban centres in northern Queensland between 2004 and 2015 were analysed (n = 13,929) dichotomously (folic deficient vs. non-deficient). Results: Overall prevalence of folic acid deficiency was 3.2% (235/7282) in urban centres compared with 7.2% (480/6647) in remote areas (p < 0.001), and 9.3% (393/4240) in the Indigenous population compared with 3.2% (273/8451) in the non-Indigenous population (p < 0.001). Prevalence of folic acid deficiency dropped from 12.2% (n = 481) in 2004–2008 to 1.5% (n = 126) in 2010–2015 (p < 0.001). This translates into a relative risk reduction (RRR) of 88%. RRR was 79% (7.2% vs. 1.5%) in urban centres, 91% (17.3% vs. 1.5%) in remote areas, 92% (20.5% vs. 1.6%) in the Indigenous population and 80% (7.4% vs. 1.5%) in the non-Indigenous population (p < 0.001 for all). Conclusions: Substantial declines of folic acid deficiency to low and comparable proportions in former high-risk populations indicate that mandatory folic acid fortification of flour has had a population-wide benefit in northern Queensland. [ABSTRACT FROM AUTHOR]
- Published
- 2019
- Full Text
- View/download PDF
11. Enablers and barriers to the secondary use of health data in Europe: general data protection regulation perspective
- Author
-
Jakov Vukovic, Damir Ivankovic, Claudia Habl, Jelena Dimnjakovic, Graduate School, Public and occupational health, APH - Methodology, and APH - Quality of Care
- Subjects
Secondary health data ,Public Health, Environmental and Occupational Health ,GDPRGeneral Data Protection Regulation ,Data sharing - Abstract
Background The General Data Protection Regulation is a regulation in EU law on data protection and privacy in the European Union. We aimed to provide an overview of the General Data Protection Regulation (GDPR) enablers and barriers to the secondary use of health data in Europe from the research we conducted in the Joint Action InfAct (Information for Action!) WP10 Assessing and piloting interoperability for public health policy, as well as to provide an example of a national-level case study on experiences with secondary use of health data and GDPR on an example of the Austrian COVID-19 data platform. Methods We have identified a number of European initiatives, projects and organizations that have dealt with cross-border health data sharing, linkage and management by desk research and we conducted 17 semi-structured in-depth interviews and analyzed the interview transcripts by framework analysis. Results GDPR was seen as an enabler to the secondary use of health data in Europe when it comes to user rights over their data, pre-existing laws regarding data privacy and data sharing, sharing anonymized statistics, developing new data analysis approaches, patients` trust towards dealing with their health data and transparency. GDPR was seen as a barrier to the secondary use of health data in Europe when it comes to identifiable and individual-level data, data sharing, time needed to complete the process, workload increase, differences with local legal legislations, different (and stricter) interpretations and access to data. Conclusion The results of our analysis show that GDPR acts as both an enabler and a barrier for the secondary use of health data in Europe. More research is needed to better understand the effects of GDPR on the secondary use of health data which can serve as a basis for future changes in the regulation.
- Published
- 2021
12. HeSANDA Stakeholder Consultation Report
- Author
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Evans, Alison, Henwood, Jen, and Nemeh, Fiona
- Subjects
Secondary health data ,clinical trials ,consultation - Abstract
HeSANDA Stakeholder Consultation Project: Summary of consultation feedback.
- Published
- 2021
- Full Text
- View/download PDF
13. Operational Challenges in the Use of Structured Secondary Data for Health Research
- Author
-
Ruth Guinsburg, Paulo Bandiera-Paiva, Adriana Sanudo, Carlos R.V. Kiffer, Kelsy Catherina Nema Areco, Rita de Cássia Xavier Balda, Rosa M. V. Freitas, Tulio Konstantyner, Daniela Testoni Costa-Nobre, Bernadette Cunha Waldvogel, Milton Harumi Miyoshi, Mônica Teixeira, Ana Sílvia Scavacini Marinonio, Mandira Daripa Kawakami, Maria Fernanda B. Almeida, and Liliam C. C. Morais
- Subjects
medicine.medical_specialty ,Coping (psychology) ,Process management ,Databases, Factual ,Process (engineering) ,Computer science ,Resource planning ,Data validation ,datasets as topic ,Death Certificates ,Health data ,Cohort Studies ,03 medical and health sciences ,population studies in public health ,0502 economics and business ,Infant Mortality ,medicine ,Humans ,Child ,Original Research ,030505 public health ,Public health ,05 social sciences ,public health ,Public Health, Environmental and Occupational Health ,Infant ,Data set ,secondary health data ,Research Design ,Birth Certificates ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,050203 business & management ,Brazil ,Datasets as Topic - Abstract
Background: In Brazil, secondary data for epidemiology are largely available. However, they are insufficiently prepared for use in research, even when it comes to structured data since they were often designed for other purposes. To date, few publications focus on the process of preparing secondary data. The present findings can help in orienting future research projects that are based on secondary data.Objective: Describe the steps in the process of ensuring the adequacy of a secondary data set for a specific use and to identify the challenges of this process.Methods: The present study is qualitative and reports methodological issues about secondary data use. The study material was comprised of 6,059,454 live births and 73,735 infant death records from 2004 to 2013 of children whose mothers resided in the State of São Paulo - Brazil. The challenges and description of the procedures to ensure data adequacy were undertaken in 6 steps: (1) problem understanding, (2) resource planning, (3) data understanding, (4) data preparation, (5) data validation and (6) data distribution. For each step, procedures, and challenges encountered, and the actions to cope with them and partial results were described. To identify the most labor-intensive tasks in this process, the steps were assessed by adding the number of procedures, challenges, and coping actions. The highest values were assumed to indicate the most critical steps.Results: In total, 22 procedures and 23 actions were needed to deal with the 27 challenges encountered along the process of ensuring the adequacy of the study material for the intended use. The final product was an organized database for a historical cohort study suitable for the intended use. Data understanding and data preparation were identified as the most critical steps, accounting for about 70% of the challenges observed for data using.Conclusion: Significant challenges were encountered in the process of ensuring the adequacy of secondary health data for research use, mainly in the data understanding and data preparation steps. The use of the described steps to approach structured secondary data and the knowledge of the potential challenges along the process may contribute to planning health research.
- Published
- 2021
14. Secondary use of routinely collected health data and caring for the elderly: a case study of potentially harmful prescribing
- Author
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Gvozdanović, Katarina, Draušnik, Željka, Gvozdanović, Darko, Jurak, Ivan, Fišter, Kristina, Kujundžić Tiljak, Mirjana, Reiner, Željko, Klarica, Marijan, Anić, Branimir, and Borovečki, Ana
- Subjects
secondary health data ,CEZIH ,harmful prescribing - Abstract
Introduction and objectives. Elderly are the largest group of users of prescription medications. Over 20 % of the population in Croatia is older than 65 years and this proportion is expected to increase as the population is ageing. Due to the multi-morbidities, multiple concomitant medicines, and underlying metabolic and cognitive changes, drug prescribing in the elderly can result in adverse health outcomes and unnecessary costs for the health system. The objective of our work is to explore the potential of secondary use of routinely collected health data for generating the evidence in support of healthy ageing, using potentially inappropriate drug prescribing as a case study. Methods. The Central Health Information System of the Republic of Croatia (CEZIH) is the largest source of routinely collected health data in Croatia. Based on the published functional specification, we analysed CEZIH in terms of its structure and available data elements. As a measure of inappropriate drug prescribing, we chose the internationally accepted STOPP/START criteria (Screening Tool of Older People’s Prescriptions and Screening Tool to Alert to Right Treatment) for prescribing in older people. We compared the data contained in CEZIH with the information needed for the implementation of the STOPP/START criteria. Results. The STOPP/START criteria provide 114 evidence based rules to avoid commonly encountered points of potentially inappropriate prescribing. The precondition to apply those rules is availability of information on patient age, prescribed medications, indications, medical conditions. ePrescription contains structured information for over 99% of medicines prescribed/ dispensed in the primary care setting since 2011. The attributes available in ePrescription include brand name, active substance, dose, form, indication, date of prescription and dispensation, patient identifier which allows for application of 38 STOPP/START criteria. Additional information can be retrieved from the electronic healthcare record within CEZIH (64 criteria). Conclusion. Routinely collected electronic patient data in Croatia can be used to generate the evidence on inappropriate drug prescribing using STOPP/ START criteria. Such analyses have been done in many countries to assess suboptimal prescribing practices, however, in Croatia, this has not been the case despite the importance of the issue. Secondary use is a complex process that requires accessible data, understanding of data sources, data structure and research methodologies. Interdisciplinary and inter-institutional collaboration is important to make the most of the results and to support regulatory actions and policy development.
- Published
- 2020
15. Qualitätssicherung mithilfe von Routinedaten.
- Author
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Kostuj, T. and Smektala, R.
- Abstract
Copyright of Der Unfallchirurg is the property of Springer Nature and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
- Published
- 2010
- Full Text
- View/download PDF
16. Patterns of analgesic and anti-inflammatory medicine use by Australian veterans.
- Author
-
Pearson, S.-A., Ringland, C., Kelman, C., Mant, A., Lowinger, J., Stark, H., Nichol, G., Day, R., and Henry, D.
- Subjects
- *
DRUG prescribing , *ANALGESICS , *CENTRAL nervous system depressants , *NONSTEROIDAL anti-inflammatory agents , *CYCLOOXYGENASE 2 inhibitors , *OLDER people - Abstract
Background: We examined analgesic and anti-inflammatory medicine use by Australian veterans before and after the introduction of selective Cox-2 inhibitors. Methods: We studied cohorts of Gold Card-holding veterans using prescription data held by the Department of Veterans’ Affairs for the period 1 July 1998 to 30 June 2004. Outcomes were volume dispensed, average daily quantity and cumulative incidence of use of paracetamol-containing and aspirin-containing medicines, non-selective and Cox-2-selective non-steroidal anti-inflammatory drugs (NSAIDs), tramadol and dextropropoxyphene. Results: Overall, we found high levels of use of analgesic and anti-inflammatory medicines, which increased by 43% over the study period. Use of paracetamol-containing medicines was overtaken by NSAIDs in 1999/2000, corresponding to the introduction of the Cox-2-selective agents. Between 12 and 17% of Cox-2-selective medicine recipients were supplied amounts indicative of continuous use in relatively high doses and 51% of veterans received at least one relatively Cox-2-selective medicine (celecoxib, rofecoxib, meloxicam, diclofenac) by the end of the study period. Dextropropoxyphene use declined during the study and tramadol use increased 10-fold. Conclusion: This study shows very high levels of Cox-2 inhibitor use during the 6-year period. Cox-2-selective agents were more likely to be taken continuously and at higher doses than non-selective NSAIDs. This is relevant in view of the cardiovascular toxicity of this group of medicines. The study shows the value of using unit record dispensing data to assess drug use patterns. Linking dispensing records to hospital separation and mortality data will further enhance our ability to monitor drug safety. [ABSTRACT FROM AUTHOR]
- Published
- 2007
- Full Text
- View/download PDF
17. Low proportions of folic acid deficiency after introduction of mandatory folic acid fortification in remote areas of northern Queensland, Australia: a secondary health data analysis
- Author
-
Anna Slagman, Linton Harriss, Sandra Campbell, Reinhold Muller, Robyn McDermott, Slagman, Anna, Harriss, Linton, Campbell, Sandra, Muller, Reinhold, and McDermott, Robyn
- Subjects
Data Analysis ,red cell folate ,Health Status ,Health, Toxicology and Mutagenesis ,Flour ,Clinical Biochemistry ,Nutritional Status ,Mandatory Programs ,Rural Health ,Folic Acid Deficiency ,030204 cardiovascular system & hematology ,Biochemistry ,Health data ,03 medical and health sciences ,folic acid ,Folic Acid ,0302 clinical medicine ,Environmental health ,Prevalence ,Humans ,Medicine ,indigenous ,business.industry ,Australia ,Urban Health ,food and beverages ,remote ,Folic acid fortification ,secondary health data ,nutrition ,Folic acid ,030220 oncology & carcinogenesis ,Red Cell Folate ,Queensland ,business - Abstract
Background: Australia implemented mandatory folic acid fortification of bread-making flour in 2009. Objective: To assess the impact of folic acid fortification in remote vs. regional urban areas and Indigenous vs. non-Indigenous populations in northern Queensland. Methods: Routinely collected data on folic acid measurements in remote areas and two regional urban centres in northern Queensland between 2004 and 2015 were analysed (n = 13,929) dichotomously (folic deficient vs. non-deficient). Results: Overall prevalence of folic acid deficiency was 3.2% (235/7282) in urban centres compared with 7.2% (480/6647) in remote areas (p < 0.001), and 9.3% (393/4240) in the Indigenous population compared with 3.2% (273/8451) in the non-Indigenous population (p < 0.001). Prevalence of folic acid deficiency dropped from 12.2% (n = 481) in 2004–2008 to 1.5% (n = 126) in 2010–2015 (p < 0.001). This translates into a relative risk reduction (RRR) of 88%. RRR was 79% (7.2% vs. 1.5%) in urban centres, 91% (17.3% vs. 1.5%) in remote areas, 92% (20.5% vs. 1.6%) in the Indigenous population and 80% (7.4% vs. 1.5%) in the non-Indigenous population (p < 0.001 for all). Conclusions: Substantial declines of folic acid deficiency to low and comparable proportions in former high-risk populations indicate that mandatory folic acid fortification of flour has had a population-wide benefit in northern Queensland. Refereed/Peer-reviewed
- Published
- 2019
18. Pre- and postnatal factors obtained from health records
- Author
-
Wolfgang Ahrens, Fabio Lauria, Annarita Formisano, Luis A. Moreno, and Iris Pigeot
- Subjects
prenatal health records ,secondary health data ,epidemiology ,postnatal health records - Abstract
Collection of secondary data on an individual level, e.g. from official sources, may complement primary data from questionnaires and examinations in epidemiological field studies. Retrieval of individual-level secondary data thus represents an important step to constitute a comprehensive epidemiological database: secondary health data poten-tially represent an added value for the inference of causal relationships because they provide information without recall bias. In the IDEFICS/I.Family studies, health records of routine child visits reaching back to birth as well as medical records for the prenatal period were collected. Several stud-ies suggest that both intra-uterine and early infancy growth may influence the devel-opment of overweight during childhood, adolescence and even adulthood (Poston 2012). The IDEFICS/I.Family studies were conducted in different cultural settings using a standardised protocol that sometimes needed adaptation to local peculiarities. The lat-ter was the case for the documentation of routine child visits and maternity cards that varied across countries with regard to data sources and the type of information rec-orded. This chapter summarises the methodology of retrieval and harmonisation of secondary health data in the IDEFICS/I.Family studies and describes the differences and similar-ities of these records across countries.
- Published
- 2019
19. Operational Challenges in the Use of Structured Secondary Data for Health Research.
- Author
-
Areco KN, Konstantyner T, Bandiera-Paiva P, Balda RCX, Costa-Nobre DT, Sanudo A, Kiffer CRV, Kawakami MD, Miyoshi MH, Marinonio ASS, Freitas RMV, Morais LCC, Teixeira MLP, Waldvogel B, Almeida MFB, and Guinsburg R
- Subjects
- Brazil, Child, Cohort Studies, Databases, Factual, Humans, Infant, Infant Mortality, Research Design
- Abstract
Background: In Brazil, secondary data for epidemiology are largely available. However, they are insufficiently prepared for use in research, even when it comes to structured data since they were often designed for other purposes. To date, few publications focus on the process of preparing secondary data. The present findings can help in orienting future research projects that are based on secondary data. Objective: Describe the steps in the process of ensuring the adequacy of a secondary data set for a specific use and to identify the challenges of this process. Methods: The present study is qualitative and reports methodological issues about secondary data use. The study material was comprised of 6,059,454 live births and 73,735 infant death records from 2004 to 2013 of children whose mothers resided in the State of São Paulo - Brazil. The challenges and description of the procedures to ensure data adequacy were undertaken in 6 steps: (1) problem understanding, (2) resource planning, (3) data understanding, (4) data preparation, (5) data validation and (6) data distribution. For each step, procedures, and challenges encountered, and the actions to cope with them and partial results were described. To identify the most labor-intensive tasks in this process, the steps were assessed by adding the number of procedures, challenges, and coping actions. The highest values were assumed to indicate the most critical steps. Results: In total, 22 procedures and 23 actions were needed to deal with the 27 challenges encountered along the process of ensuring the adequacy of the study material for the intended use. The final product was an organized database for a historical cohort study suitable for the intended use. Data understanding and data preparation were identified as the most critical steps, accounting for about 70% of the challenges observed for data using. Conclusion: Significant challenges were encountered in the process of ensuring the adequacy of secondary health data for research use, mainly in the data understanding and data preparation steps. The use of the described steps to approach structured secondary data and the knowledge of the potential challenges along the process may contribute to planning health research., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2021 Areco, Konstantyner, Bandiera-Paiva, Balda, Costa-Nobre, Sanudo, Kiffer, Kawakami, Miyoshi, Marinonio, Freitas, Morais, Teixeira, Waldvogel, Almeida and Guinsburg.)
- Published
- 2021
- Full Text
- View/download PDF
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