U.S. health info technology lags
That's because the ultimate success of such personalized medicine projects depends on having thousands of people contribute health information to be digitally stored according to a standard format that makes it easy to share.
And that practice is not yet commonplace in the United States, or in many other industrialized nations.
"Electronic medical records could help us learn from every encounter with a patient," said Agus, an oncologist and director of the Spielberg Family Center for Applied Proteomics at Cedars-Sinai Medical Center in Los Angeles.
For now, many medical records remain in paper files that are easily lost, sometimes hard to read and less-than-convenient to locate, share and compare.
Patients in the United States, where healthcare is fragmented and Census figures indicate that nearly 45 million residents lacked health insurance in 2005, already pay the price.
Many avoidable costs are the result of a lack of information, and run the gamut from bills for unnecessarily repeated tests to potentially life-threatening care delays and medical errors, according to reports from the likes of research company Rand as well as physicians and patients on the ground.
Meanwhile, patient privacy issues, complaints about costs, competition among technology providers and doctors' apparent reluctance to embrace the system have left many medical records in the informational Stone Age.
According to statistics from the Centers for Disease Control and Prevention, only 1 in 10 U.S. physicians in 2005 were using systems that included prescription and diagnostic test orders, test results and physician notes, which are vital to a complete health information network.
As a result, the United States--which had a key role in the creation of personal computers, the rise of the consumer Internet, the mapping of the human genome and using technology to cut costs--lags Denmark, the Netherlands and some other industrialized nations when it comes to moving medical records into the digital age, according to the Commonwealth Fund, a healthcare-focused private foundation in New York.
Insurance companies, which have
"The good and the bad is that it makes things more transparent," Agus said.
The United States plans to develop a national network of health information by 2014, and the European Union has called for every member state to create a system of electronic medical records, according to PricewaterhouseCoopers' recent Pharma 2020 report.
Denmark leads the pack among European and English-speaking countries when it comes to using digital information to deliver health care, according to the Commonwealth Fund.
The Danish government provides health care for its citizens and most of their health information is kept in a single system that can be accessed and updated by an individual's primary care doctor and other medical professionals.
Anyone who has personally--or through an acquaintance or family member--grappled with a complex or terminal medical condition knows just how difficult it can be to keep track of specialist visits, hospital stays and prescription drugs--and how valuable it is for doctors, patients and family members to have immediate access to complete records during a health crisis.
"I think we need to get serious about it and look at models that are working," Commonwealth President Karen Davis said, noting that the U.S. Department of Veterans Affairs has made significant headway in digital record-keeping.
Technology guru Esther Dyson and nine of her friends involved in the Personal Genome Project are taking matters into their own hands.
They plan to soon post their personal medical records and genetic information online for all to see.
In addition to benefiting individual patients, proponents say such efforts could also help identify dangerous drug reactions or detect evolving threats to public health.
"The real problem is that everything started on paper and it was local and you had one primary doctor. The system is breaking down now," said Dyson, a technology investor who is also a director at 23andMe.com, the personal genetics site co-founded by Anne Wojcicki, who recently married one of Google's founders, Sergey Brin.
Dyson admits there is a certain safety in being a pioneer, but thinks we may already know the worst enemy of digital medical records--aggressive marketers.
"If you had hundreds of thousands of people doing it, the biggest problem would be spam," she said.