Much of the data being generated in the name of modern medical science is "destined to rest in peace" because laboratories and doctors cannot share information, Dr. George Poste said in the opening keynote of the Bio-IT World Conference and Expo. "We've got to have all new data mining and visualization tools," said Poste, who is director of the Arizona BioDesign Institute at Arizona State University in Tempe and chief executive officer of Health Technology Networks, a consultancy.
The call for better tools and standardization comes at a time when researchers and doctors are faced with a roaring "data tide" of health-care information, some of which resides in an "absolute rubbish of databases," many of them public, Poste said. The medical profession will have to contend with "massive, parallel, potentially paralyzing datasets if we don't get our act together."
Though he complained that "there's been an almost willful abandonment of standards" when it comes to biological and medical data, he also spoke at length of the positive changes that will occur in medical care in the next 10 to 20 years.
"Despite my criticisms, this is an exciting time to be around -- we are on the cusp of a whole new taxonomy of disease," Poste said.
Genetics and the resulting molecular-based medical care will mean that patients receive better diagnoses and treatments, with clinicians moving away from a one-size-fits-all approach. "Diseases are not uniform and patients are not uniform," Poste said.
The molecular basis for diseases will continue to be unraveled, so that subsets of particular maladies will be diagnosed and treated differently, he said. Important work to identify disease subtypes is already under way in treating various kinds of cancer and in neurological and cardiovascular research. HIV is another example, with patients now routinely screened to make certain the type of virus they have is not resistant to the treatments they are being given.
"The implications of this are profound," Poste said of the molecular-based diagnoses and treatment. "This will lead to an absolute sea change in the next 10 to 15 years."
However, it also will lead to the emergence of "genetics malpractice law, particularly in oncology," the treatment of cancers, Poste said. Legal ramifications are an important issue that must be considered, and so are moral and ethical issues raised by molecular medicine, he said.
For instance, genetic testing will lead to pinpointing which patients will respond to particular drugs developed in the emerging field of pharmacogenomics. Developing drugs based on knowing the genetic predisposition of groups of patients to respond to those treatments also means that patients who would not be helped or who would be harmed can be eliminated from clinical trials. But it could be that federal regulators will insist that drug companies test patients who are not among the subset who will respond favorably, which could lead to disastrous consequences, Poste said. Such ethical dilemmas must be thoroughly discussed and sorted out, he said.
At the same time, patients increasingly have access to the same information as clinicians and more and more arrive at doctors' offices armed with medical data. "Physicians will have to adapt to it," Poste said of patients obtaining information from the Internet, and "we will be asked increasingly to take responsibility for our own health" as more and better information is available.
Poste also looked forward to a time when people with paralysis will use functional electrical stimulation to help regain use of limbs, and artificial vision will mean blind people read without braille. Perhaps before then, there is the need for the U.S. and other nations to follow the lead of the French National Health Service, which 18 months ago required citizens to use health cards that store their medical information in a centralized place.
"I think it should be an implantable chip," Poste said of a system for keeping an individual's medical data together in one place that can be easily accessed, "but that's why I've never been allowed in the marketing department."
On a more sober note, he urged the rebuilding of the health IT infrastructure so that systems are in place for sharing data in the event of a global pandemic. "The principle viruses don't need visas and neither do bacteria," he said, adding that were a global influenza pandemic to occur it could have the same effect as the 1918 outbreak, which killed millions of people. "Everyone thinks it will be different this time, but it won't be," he said. -- IDG News Service
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