Power to the patient
By Philip Ebels
Doctors, it is said, are not exactly what might be called early adopters of new technologies. It took them almost a generation to get used to the stethoscope after it was invented in the early 19th century.
Today, they are not much faster. The average time for a medical innovation to come into daily practice, says Eric Topol, an American cardiologist and author of a new book on what he calls “the consumer-driven healthcare revolution that is waiting to happen”, is 17 years.
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"They are absolutely sclerotic," he told EUobserver, "ossified."
The revolution, then, will have to come from patients, Topol argues. Or rather, from consumers, because patients of the 21st century make their own decisions.
One of those patients is Dave deBronkart, an American blogger and activist better known as e-Patient Dave, who in 2007 was diagnosed with incurable kidney cancer. Tumours had spread throughout his body. Doctors told him he had another 24 weeks to live.
But deBronkart went online and joined a cancer patient community, where he learned of a clinical trial for a powerful drug that just might do the trick. It did. Little less than a year later, deBronkart was cured.
"It is not a failure on the doctor’s part," he told EUobserver. "There is so much going on these days. It is impossible for any one person to keep track of every new development."
But an army of patients, he says, connected through and fostered by the internet, may do a better job collectively. "Smart patients can find things that doctors haven’t seen."
Today, deBronkart leads the Society for Participatory Medicine, or the e-patient movement, a movement of people who are "equipped, enabled, empowered and engaged in their health and health care decisions," according to the movement's manifesto.
The general idea is that the internet enables today's patients to educate themselves about their health and possible treatments, and then in partnership with their doctor - or rather, consultant - decide on the way forward.
"It is no longer true that the only way to find valid, useful, clinically accurate information [on healthcare] is through medical school," says deBronkart.
One thing that e-patients care about is data. It is with data that they are able to track their health and make educated decisions.
This is why it is a bad thing, they say, that it is often difficult for patients to gain access to their own personal medical records.
In Europe, the right to access personal health data is guaranteed under EU law, but patients often need to put in a formal request and procedures can be long and complicated.
According to a study conducted for the European Commission, only four percent of European hospitals grant patients online access to their medical records.
But new technologies allow people to create their very own health records.
There is a rapidly growing market of gadgets and apps that track your heartbeat, blood pressure, sleep cycle, or even glucose level. Nike and Apple famously collaborated on a running shoe with a micro-chip that connects to your iPod, turning it into a personal trainer.
It has led to a movement of people, under the name Quantified Self, who are not necessarily sick but just like to track and share all kinds of health data, from daily exercises to the cognitive benefits of chewing gum.
Others go a step further and have their DNA sequenced. "That way, you would be able to compare it with the DNA of, say, a tumour, and look at the root of the cancer," says Eric Topol, the healthcare futurist, who in his book talks of "digitising the human body."
Brussels bay area
It all sounds very California, where most new trends and technologies come from. In fact, Quantified Self began in the San Francisco Bay Area. Eric Topol's office is in San Diego.
But, says deBronkart, "there is a great awakening going on, also in Europe."
The e-patient manifesto was recently translated into Spanish by volunteers after deBronkart visited the country. Late February, people began work on a Dutch translation. Local Quantified Self chapters are opening up across the old continent.
For her part, Birgit Beger, secretary general of the Standing Committee of European Doctors, says that e-patienthood "is not yet the European average."
But, she says, "it is a good development. It is great if a patient takes good care of himself. It makes it easier for the doctor."