By Nancy Weil, IDG News Service
April 15, 2004 | BOSTON - Much of the data generated in the name of modern medical science is “destined to rest in peace” because laboratories and doctors cannot share information, George Poste said in his keynote speech at the Bio-IT World Conference + 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 CEO 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 healthcare 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 data sets if we don’t get our act together.”
Though he complained “there’s been an almost willful abandonment of standards” when it comes to biological and medical data, Poste 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. Molecular-based medicine will mean that patients receive better 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. “The implications of this are profound,” Poste said of molecular-based diagnoses and treatment. “This will lead to an absolute sea change in the next 10 to 15 years.”
Legal and Ethical Issues
However, it also will lead to the emergence of “genetics malpractice law, particularly in oncology,” Poste said. Legal ramifications must be considered, as must moral and ethical issues raised by molecular medicine, he said.
For instance, genetic testing promises to pinpoint which patients will respond to particular drugs developed using pharmacogenomics. Developing drugs knowing the genetic predisposition of which patients will respond positively to those treatments also means weeding out those who would not.
But federal regulators would insist that drug companies test patients not among the subset who will respond favorably, which could lead to disastrous consequences, Poste said. Such ethical dilemmas must be sorted out, he added.
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, and “we will be asked increasingly to take responsibility for our own health” as more and better information is available.
Poste envisioned a time when functional electrical stimulation can help paralyzed people regain use of limbs. He also discussed the need for electronic medical records. “I think it should be an implantable chip,” Poste said of a system for keeping an individual’s medical data in one place that can be easily accessed, “but that’s why I’ve never been allowed in the marketing department.”
On a more sobering 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 principal viruses don’t need visas and neither do bacteria,” Poste said.
* Bio-IT World Conference + Expo, Health-IT World Conference + Expo, March 30-April 1, Boston