Electronic records create challenges: DNA |
Ethical standards and oversight must be world class. Individuals must be confident their privacy is protected in a deeply personal and sensitive area such as health information. Individuals should be free from unlawful discrimination or stigmatisation based on their real or perceived genetic status. |
The community also recognises the important benefits to researchers and health system planners in using some data for epidemiological purposes. |
The move to e-health is inevitable and promises better health outcomes. To ensure this happens, government must guarantee openness, transparency and plenty of public education and debate. If not, Australia’s health-care system will lose this opportunity to harness itself to the electronic revolution. Read more at www.theaustralian.news.com.au |
New legislation gives patients more rights. | Health data breach notification rule |
A new federal data breach notification rule for patients’ medical data that goes into effect Sept. 23 is said to be broader in its reach than previous health data rules, but it also may have a loophole that could limit its effect. |
The new rule has a broader scope because it applies the breach notification rules to “business associates” of covered entities, which include health information exchanges, Jodi Daniels, director of policy and research in HHS’ Office of the National Coordinator for Health IT, said at a federal advisory meeting Sept. 18. |
The new rule is a significant change for the business associates because it is the first time they are being subjected to federal law in this area, said John Barlament, partner with the Michael Best & Friedrich law firm in Milwaukee. Read more at fcw.com |
Personal Health Records: Information Wants To Be Free |
In contrast, he says, most health plans, hospitals, and physician groups want to use PHRs, not only to improve patient outcomes, but also to keep their customers tied to them. So they don’t want to enable patients to be able to take their PHRs with them when they go to a competitor. “If you give someone enough access to their health record, you’re allowing your customer to become independent, which is not something any business wants to do.” |
So while Evans’ case doesn’t hold true across the board, there is truth in what he says. Hospitals, physician groups, and insurers do have a vested interest in restricting patients’ access to their own medical records. Patients can view them, and even add to them or correct them, but they usually can’t take their online records with them when they leave. Somewhere in this proprietary maze, information wants to be free, but most PHRs are not. Read more at industry.bnet.com |
Brian Ahier writes at his Healthcare IT blog that about 3 million genome-related patents are now on file, suggesting this could slow the development of tests and cures. So far the National Research Council disagrees. A draft report from the National Insitutes of Health indicates 20% of the human genome is already patented. |
The issue of genetic patenting is also being examined in Australia, where a Senate committee will soon hold public hearings on the question of genetic patents. This came after Genetic Technologies Ltd., which licensed the Australian rights to Myriad’s patent, send lawyer letters to everyone conducting tests for the BRCA1 and BRCA2 genes, telling them to cease and desist. |
The arguments should be familiar to everyone involved in controversies involving software patents and open source. Are patent rights on genes necessary to innovation, or are they in fact a hindrance? Read more at healthcare.zdnet.com |
A Push for the Wired Patient’s Bill of Rights |
Starting with a few dozen supporters, including health bloggers, individual physicians, startups and Microsoft, a group is seeking to firmly inject the rights of patients into the Obama administration’s multibillion-dollar drive to computerize medical records. |
The group’s effort begins with a Web site, HealthDataRights.org, which goes live on Monday night. And it is a bottom-up endeavor to harness the power of social media to influence policy and practice as personal medical information begins a years-long journey from paper records into the Internet age. |
The group’s declaration of “health data rights” states that individuals should have: the right to their own medical information; the right to know the source of each element of information; the right to take a complete copy of their health information; and the right to share their health data with others as they see fit. Read more at bits.blogs.nytimes.com |
 A coalition of health IT reformers today offers a Bill of Heath Data Rights aimed at moving the heart of the health IT debate away from doctors and insurance companies, toward patients.
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The actual proposal is postcard simple:
In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. All people:
- Have the right to their own health data.
- Have the right to know the source of each health data element.
- Have the right to take possession of a complete copy of their individual health data, without delay, at minimal or no cost. If records exist in computable form, they must be made available in that form, without delay, at minimal or no cost.
- Have the right to share their health data with others as they see fit.
These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights. Read more at healthcare.zdnet.com |
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Electronic records create challenges: DNA
