secondary data use
Tao C et al, J Am Med Inform Assoc, 2012
The clinical element model (CEM) is an information model designed for representing clinical information in electronic health records (EHR) systems across organizations. The current representation of CEMs does not support formal semantic definitions and therefore it is not possible to perform reasoning and consistency checking on derived models. This paper introduces our efforts to represent the CEM specification using the Web Ontology Language (OWL).
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29 December 2012 | No Comments »
Categories: Bibliography, Journal Article | Keyword(s): Electronic Health Records, OWL, Secondary Data Use, Semantic Web, United States
Tolar M, Balka E. International Journal of Medical Informatics, 2012
It is argued that with the introduction of electronic medical record (EMR) systems into the primary care sector, data collected can be used for secondary purposes which extend beyond individual patient care (e.g., for chronic disease management, prevention and clinical performance evaluation). However, EMR systems are primarily designed to support clinical tasks, and data entry practices of clinicians focus on the treatment of individual patients. Hence data collected through EMRs is not always useful in meeting these ends.
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6 February 2012 | No Comments »
Categories: Bibliography, Journal Article | Keyword(s): Canada, Community health centres, Electronic Health Records, Primary Care, Reminder Systems, Secondary Data Use
Tolar M, Balka E. International Perspectives in Health Informatics, 2011
With the introduction of electronic medical record (EMR) systems into the primary care sector the collected data become available for purposes beyond individual patient care, i.e. chronic disease management, prevention and clinical performance evaluation. However EMR systems are primarily designed to support clinical tasks, and physicians focus on the treatment of individual patients.
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17 July 2011 | No Comments »
Categories: Bibliography, Book Article | Keyword(s): Canada, Chronic Diseases, Disease Management, Electronic Health Records, Prevention, Primary Care, Secondary Data Use
Gardner E. Health Data Management Magazine, 19(6)
With meaningful use taking up all the top slots on the national EHR to-do list, record retention and preservation don’t even make the first page: Data storage is so cheap, so the popular thinking seems to be, we’ll just keep everything and worry about it later. But Milton Corn, M.D., deputy director for research and education at the National Library of Medicine, thinks we should worry about it now.
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30 May 2011 | No Comments »
Categories: Bibliography, Journal Article | Keyword(s): Data Storage, Electronic Health Records, Genetic Data, Privacy, Research, Secondary Data Use, Standards, United States
Milgram LK et al, ElectronicHealthcare, 10(1)
Provincial health data repositories enable clinical data utilization for secondary data uses. This study profiles the first use of Ontario Laboratories Information System (OLIS) data and demonstrates the value of automating tumour marker data collection to enhance cancer stage information in the Ontario Cancer Registry.
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29 April 2011 | No Comments »
Categories: Bibliography, Journal Article | Keyword(s): Canada, Data Capture, Secondary Data Use
Holzer K, Gall W. Methods of Information in Medicine, 50(3)
Objectives:
Due to the increasing adoption of Electronic Health Records (EHRs) for primary use, the number of electronic documents stored in such systems will soar in the near future. In order to benefit from this development in secondary fields such as medical research, it is important to define requirements for the secondary use of EHR data. Furthermore, analyses of the extent to which an IHE (Integrating the Healthcare Enterprise)-based architecture would fulfill these requirements could provide further information on upcoming obstacles for the secondary use of EHRs.
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27 March 2011 | No Comments »
Categories: Bibliography, Journal Article | Keyword(s): Electronic Health Records, IHE, Requirements, Secondary Data Use
Brown I et al, BMJ, 342
Smyth discusses the recent report from the Academy of Medical Sciences on research regulation. The expert group’s reliance on anonymity to protect participants in research was based on assumptions about key NHS patient data systems that may no longer be justified in an era of ubiquitous data generation and sharing. The report also pays insufficient attention to patient autonomy.
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21 March 2011 | No Comments »
Categories: Bibliography, Journal Article, UK EHR | Keyword(s): Anonymization, Consent, Electronic Health Records, Opt out, Re-identify, Research, Secondary Data Use, UK
Brown I et al,
This article analyses the legality of the use of electronic patient records in the NHS for research without explicit patient consent under UK and EU law, with particular reference to the adequacy of the information provided to patients and the increasing difficulties of achieving de-identification. In section II, we describe the main NHS databases used for medical research purposes in England and the transparency of this use, and the general problem of re-identification.
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14 March 2011 | No Comments »
Categories: Bibliography, Journal Article, Patients, RA News, RA Research, Record Access | Keyword(s): Confidentiality, Consent, De-identify, Electronic Health Records, Electronic Medical Records, Privacy, Re-identify, Research, Secondary Data Use, UK
El Emam K et al, Can J Hosp Pharm, 62(4)
Background:
Pharmacies often provide prescription records to private research firms, on the assumption that these records are de-identified (i.e., identifying information has been removed). However, concerns have been expressed about the potential that patients can be re-identified from such records. Recently, a large private research firm requested prescription records from the Children’s Hospital of Eastern Ontario (CHEO), as part of a larger effort to develop a database of hospital prescription records across Canada.
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13 February 2011 | No Comments »
Categories: Bibliography, Journal Article | Keyword(s): Canada, De-identify, Privacy, Re-identify, Secondary Data Use
Linder JA et al, Pharmacoepidemiology and Drug Safety, 2010
Purpose
Physicians in the United States report fewer than 1% of adverse drug events (ADEs) to the Food and Drug Administration (FDA), but frequently document ADEs within electronic health records (EHRs). We developed and implemented a generalizable, scalable EHR-based system to automatically send electronic ADE reports to the FDA in real-time.
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17 October 2010 | No Comments »
Categories: Bibliography, Journal Article | Keyword(s): Adverse Drug Events, Ambulatory Care, Electronic Health Records, Electronic Medical Record System, Electronic Medical Records, Secondary Data Use, United States
Teasdale S et al, Informatics in Primary Care, 15(3)
This paper, presented as a panel at the American Medical Informatics Association (AMIA) Fall Symposium 2006, explores a number of secondary uses of primary care clinical data derived from point-of-care systems, and the issues arising from those uses. The authors (from the USA and the UK) describe, compare and contrast some secondary uses: pay-for-performance, public disclosure, clinical audit, health resource planning, and clinical system usage; in various environments: national health system, network of small family practice offices, and university teaching centres.
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15 May 2010 | No Comments »
Categories: Journal Article | Keyword(s): Internet, Medical Informatics, Primary Care, Secondary Data Use, UK, United States
Ritchie, Marylyn D. et al, The American Journal of Human Genetics, 2010
Large-scale DNA databanks linked to electronic medical record (EMR) systems have been proposed as an approach for rapidly generating large, diverse cohorts for discovery and replication of genotype-phenotype associations. However, the extent to which such resources are capable of delivering on this promise is unknown. We studied whether an EMR-linked DNA biorepository can be used to detect known genotype-phenotype associations for five diseases. Twenty-one SNPs previously implicated as common variants predisposing to atrial fibrillation, Crohn disease, multiple sclerosis, rheumatoid arthritis, or type 2 diabetes were successfully genotyped in 9483 samples accrued over 4 mo into BioVU, the Vanderbilt University Medical Center DNA biobank. Previously reported odds ratios (ORPR) ranged from 1.14 to 2.36. For each phenotype, natural language processing techniques and billing-code queries were used to identify cases (n = 70–698) and controls (n = 808–3818) from deidentified health records.
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6 April 2010 | No Comments »
Categories: Bibliography, Journal Article | Keyword(s): DNA, Electronic Health Records, Electronic Medical Records, Genomics, NLP, Secondary Data Use, United States
El Emam, Khaled et al, BMC Medical Informatics and Decision Making, 10(1)
Background
A common disclosure control practice for health datasets is to identify small geographic areas and either suppress records from these small areas or aggregate them into larger ones. A recent study provided a method for deciding when an area is too small based on the uniqueness criterion. The uniqueness criterion stipulates that an the area is no longer too small when the proportion of unique individuals on the relevant variables (the quasi-identifiers) approaches zero. However, using a uniqueness value of zero is quite a stringent threshold, and is only suitable when the risks from data disclosure are quite high. Other uniqueness thresholds that have been proposed for health data are 5% and 20%.
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3 April 2010 | No Comments »
Categories: Bibliography, Journal Article | Keyword(s): Canada, Identification, Secondary Data Use
de Lusignan, Simon, Informatics in Primary Care, 17(3)
This issue continues the discussion within our journal about how we can legitimise the use of the routinely collected data for research. We have some of the best long-term computer records in the world – which are potentially goldmines for research. However, we are currently working through how to codify this process.
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9 January 2010 | No Comments »
Categories: Journal Article, UK EHR | Keyword(s): Electronic Health Records, Emergency Care, Quality, Research, Secondary Data Use, UK
Weiner, Mark G., and Peter J. Embi, Ann Intern Med, 151(5)
Today’s health information technology (HIT) landscape provides an unprecedented convergence of comprehensive electronic health records, robust computational processing power, data sharing capabilities, and emerging financial incentives that favor the widespread adoption and meaningful use of such systems.
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29 July 2009 | No Comments »
Categories: Journal Article | Keyword(s): Health Information Technology, Research, Secondary Data Use
Platt, Richard et al, N Engl J Med, 361(7)
In 2007, Congress directed the Food and Drug Administration (FDA) to create a new postmarketing surveillance system that will, by 2012, be using electronic health data from 100 million people to prospectively monitor the safety of marketed medical products. This new system is intended to complement existing systems of “spontaneous” adverse-event reporting. In May 2008, the FDA announced the Sentinel Initiative, which would “access the capabilities of multiple, existing data systems (i.e., electronic health record systems, medical claims databases).”
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28 July 2009 | No Comments »
Categories: Journal Article | Keyword(s): Distributed Data Network, Electronic Medical Records, FDA, Medical Product Safety, Prescription Databases, Registries, Safety, Secondary Data Use, Surveillance, United States
El Emam K et al, J Am Med Inform Assoc, 16(5)
Background
The explicit patient consent requirement in privacy laws has a negative impact on health research, leading to selection bias and reduced recruitment.
Objective
There is no legislative requirement to obtain consent if the information collected or disclosed is de-identified. We develop and empirically evaluate a new globally optimal de-identification algorithm that satisfies the k-anonymity criterion and that is suitable for health datasets.
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18 July 2009 | No Comments »
Categories: Journal Article | Keyword(s): Algorithms, Canada, Consent, De-identify, Electronic Health Records, Health Data, Patient, Secondary Data Use
Kho, Michelle E. et al, BMJ 2009;338:b866
Objectives
To determine whether informed consent introduces selection bias in prospective observational studies using data from medical records, and consent rates for such studies.
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13 March 2009 | No Comments »
Categories: Journal Article | Keyword(s): Consent, Electronic Health Records, Informed Consent, Research Design, Secondary Data Use, Selection Bias
Rahm, Alanna Kulchak et al, ElectronicHealthcare, 7(3)
Background
Electronic medical record (EMR) systems are a rapidly growing form of documentation that has the potential to improve quality of care, physician and practice efficiency and accessibility of stored medical information.
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15 January 2009 | No Comments »
Categories: Journal Article | Keyword(s): Electronic Health Records, Electronic Medical Records, Secondary Data Use
De Clercq, Etienne et al (eds), HIT@HealthCare 2008, 2008
In Medical Informatics three types of processes play a central role: organizational, patient-related and decision making-related processes. The first type deals with settings, such as a hospital care setting or a primary care setting; the second is related to health and disease (i.e. to patients); the third type of process aims at assisting in decision making and therapy and evolves in the brains of healthcare professionals. Hence, in all domains data, information and knowledge play a key role. As these three processes evolve, dealing with individuals – patients, doctors and nurses – because of that human factor there are obviously limitations imposed by formalization and standardization. In the past, there have been some unrealistic expectations regarding the possible contributions of medical informatics to healthcare. However, such contributions appeared to be very modest, to say the least. The same applies to the overly optimistic expectations regarding the introduction of electronic health records. Although the technology is widely available, all these developments appear to be far more complex than expected. The need for an improved understanding of the nature of medical knowledge to better serve health remains to be emphasized.
22 December 2008 | No Comments »
Categories: Proceedings | Keyword(s): Archetypes, Clinical Models, Data Exchange, Data Protection, e-Health, Electronic Health Records, Health Networks, Open Source, Physiotherapy, Privacy Protection, Secondary Data Use
