Harmonized Standards for the Genome and Family History

“As one of the first humans to have my genome sequenced, I’m passionate about the standards used to record genomic and family history data. The initial national effort just completed the public comment phase and is not yet approved by the HITSP panel, but we hope to gain panel approval in December and present this work to the AHIC Successor on January 8, 2009 for acceptance by Secretary Leavitt before he leaves office. Here’s a summary of the work thus far.”
Article
John Halamka, Life as a Healthcare CIO, 19 November 2008

Cerner Incorporates Genomics Into EMR

“Molecular diagnostics laboratories that are doing clinical genomics “try to fit a round peg into a square hole, especially when it comes to workflow,” says Mark Hoffman, director of translational medicine at Cerner, the Kansas City-based health-IT player which has been targeting this market since 2005. “They try to use systems that were designed for traditional pathology and shoehorn those into a very unique and contemporary workflow, going into contortions to do that within their information system, especially with infectious disease testing”.”
Article
Cindy Atoji, Digital HealthCare & Productivity, 11 November 2008

23andMe: Time’s Best invention of 2008

“Just two years since conception and personal genome services company 23andMe’s Personal Genome Service™ has earned TIME Magazine’s Best Invention of the Year for “its exceptional work in making personal genomics accessible and affordable”.”
Article
Genetics & Health, 31 October 2008

Four Challenges in Personalized Medicine

“Personalized medicine has just begun to alter health care in fundamental and profound ways. Genetic tests have already become mainstream practice for some cancers in identifying treatment strategies. And as an indication of what the future might hold, genetic analyses indicate that asthma, hypertension and Alzheimer�s have many genes in common. But before we can take full advantage of available genetic information, there are four factors we need to address: the electronic health record, reimbursement, privacy practices, and provider and patient education. These are in addition to the progress in medical science needed to understand the specifics of the relationships among our genome, the environment and our health.”
Article
John Glaser, HHNMostWired, 1 October 2008

First big regulatory challenge to Health 2.0

“It is something of a surprise that it popped up this way, but the establishment challenge to Health 2.0 was going to start somewhere. And it appears to have started with two big states, New York & California ordering 13 companies to stop Gene Testing.”
Article
Matthew Holt, The Health Care Blog, 14 June 2008

HHS considers adding genetic information to EHRs

“This has been the first public announcement I have heard on the topic, even though I began commenting on this about 6 months ago on the blog here, good to see it is work in progress. First order of business is to get some standardizations in place. The National Library of Congress is already working on the project to help supply the software vendors the information needed to create such interfaces. Patient consent will also be required. This will be a large project indeed and then there is work to bring information in to the PHR as well, as patients may want the option to have the information first in their own personal health records before sharing with a physician with services such as Microsoft HealthVault and Google Health.”
Article
The Medical Quack, 10 June 2008

Moore�s Law and health care

“Moore�s Law is the force behind the biggest trend in health care, personalized health care. Instead of guessing about what you should do based on test results when you get sick, doctors prescribe lifestyle changes beforehand, based on genetic knowledge.”
Article
Dana Blankenhorn, ZDNet Healthcare, 20 May 2008

Advancing Personalized Health Care Through Health Information Technology: An Update from the American Health Information Community’s Personalized Health Care Workgroup

Abstract:
The Personalized Health Care Workgroup of the American Health Information Community was formed to determine what is needed to promote standard reporting and incorporation of medical genetic/genomic tests and family health history data in electronic health records. The Workgroup has examined and clarified a range of issues related to this information, including interoperability standards and requirements for confidentiality, privacy, and security, in the course of developing recommendations to facilitate its capture, storage, transmission, and use in clinical decision support. The Workgroup is one of several appointed by the American Health Information Community to study high-priority issues related to the implementation of interoperable electronic health records in the United States. It is also a component of the U.S. Department of Health and Human Services’ Personalized Health Care Initiative, which is designed to create a foundation upon which information technology that supports personalized, predictive, and pre-emptive health care can be built.
Article
John Glaser, Douglas E. Henley, Gregory Downing, Kristin M. Brinner, and Personalized Health Care Workgroup of the American Health Information Community, Journal of American Medical Informatics Association, April 24, 2008 as JAMIA PrePrint; doi:10.1197/jamia.M2718

Genetics: Now that we finally have some protection�

“The Senate unanimously passed their version of a Genetic Information Non-Discrimination Act this week while the House had one hold-out when they voted to pass this legislation yesterday.� President Bush says he�ll sign the legislation into law once it arrives on his desk. What I can�t quite figure out though is with such near unanimous approval, why did it take the legislature 13 years to finally pass this law and secondly, now that they have passed it, why the 18 month wait for it to actually become law?� Maybe it has something to do with reconciliation with the numerous states who are way ahead of the Feds on this one, with some 32 states already having legislation in place to protect employees.”
Aricle
John Moore, Chilmark Research, 2 May 2008

Congress OKs Genetic Data Protection

“The House on a 414-1 vote May 1 passed the Genetic Information Nondiscrimination Act and the White House said President Bush would sign the bill into law. Rep. Ron Paul (R-Texas) was the lone dissenter. The Senate approved the bill 95-0 on April 24.”
Article
Health Data Management, 2 May 2008

Healthcare IT plays key role in curing diseases, researchers say

“Over and over again at the Bio-IT World Conference in Boston this week, researchers, providers, pharmaceutical companies and vendors alike hailed the role of electronic data exchange as central to the advances being made in disease research.
The advances are linked to the mapping of genetic code and the relative ease and speed electronic data provides for analyzing and sharing research.”
Article
Diana Manos, Healthcare IT News, 30 April 2008

Senate bill won’t prevent genetic discrimination, privacy activist says

“A genetic nondiscrimination bill approved Thursday by a Senate panel won’t protect people from potentially losing their jobs or health insurance if the information gets out electronically, a privacy activist said.
Deborah Peel, MD, founder of Patient Privacy Rights, said the Genetic Information Nondiscrimination Act (GINA), approved April 24 by the Senate Health, Education, Labor and Pensions Committee, will not protect people because it allows insurers and employers to hold genetic information, a right that should be solely in the hands of people.”
Article
Diana Manos, Healthcare IT News, 25 April 2008

Senate passes bill banning genetic discrimination

“The vast promise of an era of personalized medicine based on genetic testing long has been haunted by a disturbing possibility: The same data that could alert people to serious medical problems might be used to deny them jobs or insurance coverage.
But Thursday, the Senate voted 95 to 0 to outlaw such discrimination, with the House expected to add its approval quickly.”
Article
Ricardo Alonso-Zaldivar, Los Angeles Times, 24 April 2008

Personalized Genetics: Are we ready?

“As me and others have already stated for several times before, we are not. It was so good to read the opinion of Joel Burrill as I felt like we�re on the right way. Some excerpts from the interview made by Wired.”
Article
Bertalan Mesk�, Science Roll, 18 April 2008

In Defense of the Electronic Medical Records Developer/Vendor

“This is something I have been wanting to write about for a while and today’s the day to finally express a couple of my own opinions about some gray areas and technology in healthcare.
Healthcare as we know today is so terribly fragmented and there is nobody feeling the squeeze worse than the software companies and developers trying to produce a quality and up to date product. With the changes emerging so rapidly in healthcare, almost daily, it is becoming increasingly difficult to create a full featured software application that is not outdated before it is released.”
Article
The Medical Quack, 31 March 2008

Perlegen strikes back on privacy

“Last week, patient privacy advocate Deborah Peel, MD, wrote a letter to Healthcare IT News attacking Perlegen Sciences’ plans to work with an EMR vendor to use patient data for genetics research. In a new letter, Perlegen strikes back at Peel.”
Article
Bryan L. Walser, Perlegen Sciences, Inc., Healthcare IT News, 27 March 2008

EMR vendor to share patient data with genetics research firm

“Perlegen Sciences, Inc., a company exploring the clinical application of genetic research, plans to collaborate with an undisclosed electronic medical records vendor to identify and develop genetic markers that predict how patients are likely to respond to specific medical treatments.”
Article
Richard Pizzi, Healthcare IT News, 20 March 2008

Would you deposit to ‘biobank’?

“Hoping to link illnesses to genetics and lifestyle, the federal government is exploring the possibility of recruiting a half-million Americans to contribute their DNA and health information to an ambitious national “biobank.”
Some scientists consider the project a long shot, largely because billions of dollars are needed to fund it at a time when Congress is busy spending money on other things. And before any such study is launched, they say, Americans need protection from genetic discrimination.”
Article
Lisa M. Krieger, Mercury News, 11 March 2008

Siemens Says Integrated Diagnostics Tools Will Change Healthcare

“Thomas Miller has a vision for a new health care frontier that combines molecular imaging, molecular diagnostics, and informatics. Miller, who is CEO of workflow and solutions for Siemens Healthcare, says recent advances in these fields have created precise diagnostic tools capable of assessing and treating a growing number of diseases. These new tools provide physicians with an understanding of diseases at the molecular or genetic level, enabling them to tailor effective treatment to the individual. Digital HealthCare & Productivity recently spoke with Miller about how the health care IT network can become more efficient by using these patient-centric medical tools that transform data into knowledge.”
Article
Cindy Atoji, Digital HealthCare & Productivity, 11 March 2008

Google Backs Harvard Scientist’s 100,000-Genome Quest

“A Harvard University scientist backed by Google Inc. and OrbiMed Advisors LLC plans to unlock the secrets of common diseases by decoding the DNA of 100,000 people in the world’s biggest gene sequencing project.”
Article
John Lauerman, Bloomberg.com, 29 February 2008

Formal Policies for Flexible EHR Security

Bernd Blobel and Peter Pharow
eHealth Competence Center, University of Regensburg Medical Center, Germany

Abstract

State of the Art methodologies for establishing requirements and solutions to securing applications are based on narrative descriptions about the use of available system, sometimes also dedicated to system components. Even nowadays new developments to ruling application security services by the use of predicate logic suffer from being administered manually. Therefore, security and privacy requirements cannot be properly met resulting in restrictions and fears for allowing the use of sensitive data and functions. Because of the sensitivity of personal health information and especially of genetic data with its wider implications beyond the original subject of care, weaknesses in guaranteeing fine-grained security and privacy rules lead to less acceptance or even the avoidance of essential information transfer and use. To overcome the problem, security and privacy have to become properties of the architectural components of the respective health information system. Embedding security into the systems architecture allows for negotiating and enforcing any security and privacy services related to principals, their roles, their relationships, further contextual information as well as other regulations summarized in formally modeled policies. The paper introduces the evolving paradigm of the model-driven architecture, first time also comprehensively deployed for security and privacy services in bio-genetic and health information systems.