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ICMCC |
the international council on medical & care compunetics |
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record access
Coffield, Robert L., and Gerald E. DeLoss, Health Lawyers News, 12(10)
Giant bytes have been taken out of the personal health record (PHR) market by technology companies like Google, Microsoft, Dossia, and others on a mission to connect consumers with their health information. If successful, the efforts by these and other Health 2.0 technology companies could transform the healthcare industry.
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“The next Congress will consider strengthening federal law to combat medical identity theft, a fast-growing type of fraud that drains billions of dollars from the health care system and threatens the well-being of victims whose identities have been compromised, a legal expert said this week.”
Article
John Pulley, Government Health IT, 16 October 2008
Georges Kutukdjian
Mediator at UNESCO,
Co-Chair of the Ethics Committee, World Academy of Biomedical Technologies (WABT),
Former Secretary-General of the International Bioethics Committee (IBC), UNESCO
Speech at the ICMCC Event 2008
June 10, 2008
In the 80’s several international organizations starting putting on their agenda issues pertaining to biology, genetics, medicine and related technologies and to their ethical, legal, social and cultural implications. This was not happening by chance. There were at least four reasons for it. Firstly, there was a sense of the increasing economic weight carried by the research in these areas and by their potential applications. Secondly, the huge expectations that progress in these areas represented in terms of health and well-being for humanity as a whole. Thirdly, the social and cultural changes that would be induced by developments in these fields were perceived as being significant. Fourthly, the public attention that advances in these areas have triggered lead decision-makers to give priority to these issues.
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Prof. Georges Kutukdjian, UNESCO
Prof. Georges Kutukdjian, Mediator, former Secretary-General of the International Bioethics Committee (IBC), UNESCO, France
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“Zorgverleners verzamelen gegevens omtrent de gezondheid van patiënten. Goede zorgverlening valt of staat met correcte en volledige informatie over de patiënt. De vertrouwelijke omgang met de patiëntgegevens is daarbij echter van essentieel belang. De patiënt moet kunnen rekenen op een verantwoorde omgang met zijn, grotendeels gevoelige, gegevens. De patiënt zou immers niet onverkort alles aan de zorgverlener meedelen wanneer de geheimhouding daarvan niet kan worden gegarandeerd. De gegevens kunnen dan opduiken in situaties waarin dat niet wenselijk is. Gezondheidsgegevens van patiënten zouden bijvoorbeeld door de zorgverzekeraar kunnen worden gebruikt om op basis daarvan premies te berekenen, eventueel zelfs de patiënt te weigeren voor een bepaalde verzekering. Ook is de uitwisseling naar de bedrijfsarts als onwenselijk te beschouwen. De werkgever kan het functioneren koppelen met de gezondheidsgegevens van een werknemer, waardoor bijvoorbeeld een arbeidscontract niet zou kunnen worden verlengd.”
Rapport
mr. J. Bonthuis, It’s privacy, 31-10-2007
“Legislation paving the way for the collection and sharing of electronic health records will lead to potential patient privacy breaches, say groups opposed to the Bill which will soon get second reading in the B.C. legislature.”
Article
Pamela Fayerman, The Vancouver Sun, 23 April 2008
“There’s a long-standing belief that one of the guiding principles of medicine is that our medical records are confidential, and that our health matters are not disclosed to anyone other than ourselves, another physician who is consulting or taking over our care, a person we specifically give permission to see our record and – in the case of certain infectious diseases – the local health department, if it’s mandated by law.”
Article
Thorswitch, TeamSugar, 13 April 2008
“There is good and bad about electronic records,” says Robert Gellman, a District-based privacy consultant. “There is a lot of promise about medicine going to electronic records. Those who are promoting it talk about its appeal to consumers. But the principal beneficiaries are the health care organization, research facilities and insurance companies.”
Once the information is in the hands of those large companies, its final destination is limitless. That is because institutions such as law enforcement, life insurance companies and researchers are not covered under the federal government’s Health Insurance Portability and Accountability Act (HIPAA).
Article
Karen Goldberg Goff, The Washington Times, 7 April 2008
“Florida’s Legislature wrongly denied patients’ access to medical-error and incident records made available after voters amended the state’s constitution in 2004, the state’s Supreme Court ruled. Patients may access records created prior to Nov. 2, 2004, when the amendment became effective, the court said. Legislation enacted after the November 2004 vote limited patients’ access to incident reports, violating the constitutional amendment, which gives patients access to any records, including documents created for or by peer-review committees, according to the court.”
Article
Melanie Evans, Modern Healthcare Online, 7 March 2008
“Most institutions can be frustrating. We all hate bureaucracy. One of the most frustrating things about hospital care can be the sheer size of the organisation and it’s layers of requirements and staff that can sometimes seem to be pretty unfeeling, uncaring, even though it’s full of health care providers.’
Article
Jaz-Michael King, A Scanner Brightly, 6 March 2008
Manattan Health Solutions, California Healthcare Foundation
“As adoption of health information technology and the ability to exchange personal health information advance, so must the legal foundation that facilitates consumers’ access to, and control and use of, such data for their own and society’s benefit. Early technological advances offer a crucial window of opportunity to design legal parameters for appropriate consumer access and control, regardless of the information’s source or how it is used.
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Robert Gellman, World Privacy Forum
“This document offers a legal and policy analysis of the privacy consequences for consumer health information stored on or by Personal Health Records systems that are not subject to the HIPAA health privacy rule. This document does not analyze the potential of PHRs for affecting the cost of health care in general. Unless specifically noted in the text, the term PHR in this document refers to PHR records and systems that are not subject to HIPAA.”
Report
Robert Gellman, World Privacy Forum, 20 February 2008
“An organization representing the information management outsourcing industry is taking issue with a new Illinois law that provides wide access to information from electronic health records, saying it unnecessarily boosts hospitals’ costs without providing adequate reimbursement.”
Article
Fred Bazzoli, Healthcare IT News, 20 February 2008
“In March this year NHS Connecting for Health launched a public information programme in the first of a series of ‘early adopter’ Primary Care Trusts (PCTs). Patients in Bolton became the first in England to receive information telling them about the introduction of the new electronic Summary Care Record. The Summary Care Record forms the national element of the NHS Care Records Service which will see an electronic record being created for every person in England who does not opt-out by 2010.”
Report
Dr Gillian Braunold MB BS FRCGP, Clinical Director Summary Care Record & Programmes, 2007
(published at the ICMCC site with the author’s consent)
“California residents must now be notified when their electronic medical information or health insurance information has been exposed.
AB1298, which took effect Tuesday, expands California’s data-breach notification law to include unencrypted medical histories, information on mental or physical conditions, and medical treatments and diagnoses.”
Article
Deborah Gage, San Francisco Chronicle, 4 January 2008
“In the world of paper medical records, a physician may simply order any needed tests rather than seek to obtain copies of a previous provider’s medical records that may or may not contain the necessary test results. With electronic health records (EHRs), it will be easier for a physician to check the EHR prior to ordering the lab work, so deciding whether to rely on such previous medical records will become a routine issue. If a physician relies on incorrect health information contained in an EHR that has been shared electronically from another provider, and the incorrect information leads to injury, is the treating physician liable for the resultant damages?”
Ronald L. Scott, University of Houston, August 2006
“Dr Paul Thornton has written a paper entitled “Why might National NHS Database proposals be unlawful?” in which he makes a strong case that “carry grave & imminent risks for both civil liberties and public health”, and that “the legal justifications used to substantiate their proposals are untested in the courts and require independent judicial clarification”.”
Informaticopia, 11 January 2006
“The custodian of an electronic health record (EHR) has the same concerns as the custodian of a paper health record when the record becomes involved in the legal process. Most often this occurs in some form of lawsuit in which a party seeks to discover and introduce evidence from the record. The custodian must determine whether to release the record, what portions of the record should be released, and whether the record is admissible as evidence.”
AHIMA e-HIM Work Group on Defining the Legal Health Record, Journal of AHIMA 76, no.9 (October 2005): 96A-D
“Electronic health records (EHRs) have captured the attention of practitioners, payors and policy makers for several reasons. EHRs are a part of the larger patient safety debate and seen by some as a key component of any patient safety solution. EHRs are responsive to efforts by providers in search of new efficiencies in their operations. Many believe that EHRs are essential to better clinical integration and health information sharing. Finally, with its emphasis on e-prescribing, a functional subset of many EHRs, Medicare Part D is on the verge of launching that new technology.”
Edward F. Shay, Physician’s News Digest, May 2005
“Objectives: To assess patients’ preferred method of consent for the use of information from electronic medical records for research.
Conclusions: Patients are willing to allow information from their medical records to be used for research, but most prefer to be asked for consent either verbally or in writing.”
Donald J Willison, Karim Keshavjee, Kalpana Nair, Charlie Goldsmith, Anne M Holbrook, BMJ 2003;326:373 (15 February)
