De-identification
Robert Rowley, EHR Bloggers
“Is my health data safe on the Internet? That is a question we hear frequently when describing web-based Electronic Health Record (EHR) systems, as well as the newly evolving field of mobile health (mHealth) applications.
Is my health data safe on the Internet?Privacy and security of health information is a central plank in the policy framework surrounding Meaningful Use and the encouragement to move health care out of a paper-based legacy and onto an e-platform. Banking did this a decade or more ago, but now is the time for health data to move into the modern era.”
Article
Robert Rowley, EHR Bloggers, 3 November 2011
3 November 2011 | No Comments »
Categories: News | Country: United States | EHR: EHR, EHR USA | Tag(s): Cloud, De-identification, Privacy, Research, Safety, Security
Michael Cross, Guardian Professional
“On all the official indicators, Barnsley PCT was doing a grand job, but it was troubled. “The bother was that the population kept dying on us,” its former chief executive, Ailsa Claire, told a King’s Fund conference in London last month.
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2 November 2011 | No Comments »
Categories: News | Country: UK | Tag(s): Data Aggregation, De-identification, Secondary Data Use
John, EMR and HIPAA
“There’s always been some really interesting discussion about EHR vendors selling the data from their EHR software. Turns out that many EHR vendors and other healthcare entities are selling de-identified healthcare data now, but I haven’t heard much public outcry from them doing it.
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2 October 2011 | No Comments »
Categories: News | Country: United States | EHR: EHR, EHR USA | Tag(s): De-identification
Medical News Today
“The demand for transparency through publicly available healthcare data is on the rise. This is the case for administrative and clinical data for research, and for clinical trials data used to support new drug approvals. Broad data access has a measurable impact on research and policy making.
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19 September 2011 | No Comments »
Categories: News | Country: Canada | Tag(s): Data Sharing, De-identification, Research, Transparency
El Emam K et al, BMC Medical Informatics and Decision Making,11(1)
BACKGROUND:
The Canadian Institute for Health Information (CIHI) collects hospital discharge abstract data from Canadian provinces and territories to create a national discharge abstract database (DAD). There are many demands for the disclosure of this data for research and analysis to inform policy making. To expedite the disclosure of this data, the construction of a DAD public use microdata file (PUMF) was considered. A PUMF may serve multiple purposes, including: confirming published results, providing broader feedback to CIHI to improve data quality, training students and fellows, providing an easily accessible data set for researchers to prepare for analyses on the full DAD data set, and serve as a large health data set for computer scientists and statisticians to evaluate analysis and data mining techniques. The objective of this study was to measure the probability of re-identification for records in a PUMF, and to de-identify a national DAD PUMF consisting of 10% of records.
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19 September 2011 | No Comments »
Categories: Science | Country: Canada | Tag(s): Data Sharing, De-identification, Research
Meaningful HIT News with Neil Versel
“Near the start of the panel, Daniel Orenstein, senior VP and general counsel of Athenahealth tried to put any lingering questions to rest right away. “I think data monetization is kind of a red herring,” Nussbaum said of people who criticize vendors for selling sensitive patient information.
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22 August 2011 | 1 Comment »
Categories: News | Country: United States | EHR: EHR, EHR USA | Tag(s): De-identification
David Harlow, KevinMD
“Walgreens is being sued by customers who are not happy that their prescription information – even though it has been de-identified – is being sold by Walgreens to data-mining companies.
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30 June 2011 | No Comments »
Categories: News | Country: United States | Tag(s): Data Mining, De-identification, Ethics, Legal, pharmacist, Privacy
Klint Finley, Read Write Web
“Data collected from customers is routinely anonymized and then sold or otherwise disseminated for research purposes. But does anonymization work? One particularly high profile case was Netflix’s release of its customer data as part of its machine learning algorithm contest.
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16 June 2011 | No Comments »
Categories: News | Country: United States | EHR: EHR, EHR USA | Tag(s): De-identification, Privacy
Thomas McMennamin, EHR Bloggers
“Everyone is talking about leveraging health data to improve care and quality and to lower costs. Health care is one of the few industries that is still waiting for the information revolution to hit.
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16 June 2011 | No Comments »
Categories: News | Country: United States | EHR: EHR, EHR USA | Tag(s): Data Aggregation, De-identification, Secondary Data Use
Helen Phung, EHR Bloggers
“Is the sharing of anonymous, de-identified health information is much different? Identifiable patient data is exquisitely sensitive and is protected as such.
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26 May 2011 | No Comments »
Categories: News | Country: United States | EHR: EHR, EHR USA | Tag(s): Data Aggregation, Data Sharing, De-identification, Personal Health Information, Privacy, Security
Healthcare IT News
“For decades, researchers have used de-identified claims and prescription data from the Thomson Reuters MarketScan Research Databases to conduct studies that evaluate medical treatments — commonly called “outcomes research” or “comparative effectiveness research.”
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23 May 2011 | No Comments »
Categories: News | Country: United States | EHR: EHR, EHR USA | Tag(s): Claims Data, Clinical Data, De-identification, Effectiveness, emr, Research, Secondary Data Use
El Emam K. Genome Medicine, 3(4)
Electronic health records are increasingly being linked to DNA repositories and used as a source of clinical information for genomic research. Privacy legislation in many jurisdictions, and most research ethics boards, require that either personal health information is de-identified or that patient consent or authorization is sought before the data are disclosed for secondary purposes. Here, I discuss how de-identification has been applied in current genomic research projects.
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6 May 2011 | No Comments »
Categories: Science | EHR: EHR | Tag(s): De-identification, DNA, Genomics, Repository, Research
Daloni Carlisle, e-Health Insider
“Fewer than half of NHS trusts have successfully “pseudonymised” their patient records, missing a government target aimed at making patient data more secure.
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26 April 2011 | No Comments »
Categories: News, UK EHR | Country: UK | EHR: EHR, EHR UK | Tag(s): De-identification, Encryption, Identifiers
The demand on data custodians to disclose health information for secondary purposes is increasing dramatically. These demands come from researchers, public health professionals, commercial actors, and governments. In many jurisdictions, de-identification is one set of methods that can be used to allow the use and disclosure of health information without consent. This report describes the reasons why it is desirable or necessary to de-identify health data before disclosing or using it for secondary purposes.
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3 April 2011 | No Comments »
Categories: Science | Tag(s): Consent, Data Sharing, De-identification, Personal Health Information, Privacy
David Harlow, HealthBlawg
“The data privacy and security concerns surrounding the transfer of de-identified data are significant. To “de-identify” what is otherwise protected health information under HIPAA, some outfits will simply strip data of 18 types of identifiers listed in federal regulations. However, the relevant regulation (45 CFR 164.514(b)(2)(ii)) also provides that this only works if “the covered entity does not have actual knowledge that the information could be used alone or in combination with other information to identify an individual who is a subject of the information.”
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22 March 2011 | No Comments »
Categories: News | Country: United States | Tag(s): Data Mining, De-identification, Legal, Ownership, Patient
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: Science, UK EHR | Country: UK | EHR: EHR, EHR UK | Tag(s): Consent, De-identification, Opt out, Research, Secondary Data Use
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: Patients, RA News, RA Research, Record Access, Science | Country: UK | EHR: EHR, EHR UK | Tag(s): Confidentiality, Consent, De-identification, emr, Privacy, Research, Secondary Data Use
Robert Rowley, EHR Bloggers
“Medical data that results from anonymized, centralized Electronic Health Record (EHR) information can provide powerful insights into trends and patterns that might otherwise not be apparent at first-glance. Such data might also provide evidence that can drive EHR development efforts.
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12 March 2011 | No Comments »
Categories: News | Country: United States | EHR: EHR, EHR USA | Tag(s): De-identification, Hypertension, Secondary Data Use
El Emam K et al, J Med Internet Res, 8(4)
Background:
With the growing adoption of electronic medical records, there are increasing demands for the use of this electronic clinical data in observational research. A frequent ethics board requirement for such secondary use of personal health information in observational research is that the data be de-identified. De-identification heuristics are provided in the Health Insurance Portability and Accountability Act Privacy Rule, funding agency and professional association privacy guidelines, and common practice.
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13 February 2011 | No Comments »
Categories: Science | Country: Canada | Tag(s): Confidentiality, De-identification, Ethics, Personal Health Information, Privacy
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: Science | Country: Canada | Tag(s): De-identification, Privacy, Secondary Data Use
