The Patient Ascendant

Toward the end of a lunch discussion at the Burrill Personalized Medicine conference in San Francisco late last year, someone suggested that two commercially available cancer drugs be administered as a combination therapy immediately, given the opinion of prominent researchers that they would work better together. The silence that followed was broken by a physician at the table.

"That's not how science works," she said.

End of discussion? Well, a drug company researcher at the table nodded his head in agreement with the doctor. But a patient activist, unimpressed, reminded the group that certain individuals can hire their own scientists to do things differently in support of patients who are unwilling to wait for science-according-to-protocol.

Um ... could you pass the sugar, please?

Yes, things were a little tense at times, but they were also exciting at the fifth annual two-day conference, hosted by Burrill & Co., the venture capital and merchant banking firm. For one thing, everyone was talking about science. For another, the traditional relationship between doctor, patient, and scientist was changing even as we lunched. We were witnessing the ascendance of the patient.

One might expect this dynamic at a conference on personalized medicine, the field of genetics-driven therapies and preventive measures tailored to individuals. But it is not the health care enterprise's focus on personalized treatment and counseling alone that empowers the patient. It is also patients' increased access to information about their personal genomes and the seemingly infinite bank of information on health care, drugs, and science on the Internet.

This convergence seems positive for the most part. Better informed patients ask better questions and can handle more detailed information from doctors. And doctors tend to be more personally involved with patients with whom they can discuss details. Personalized medicine, in turn, will get physicians more involved with the science of developing wellness strategies and therapies for their patients.

One might even anticipate a phoenixlike reemergence of the medical profession from the regulatory and insurance-driven numbers game that for decades has placed a heavier emphasis on the quantity than on the quality of patient interactions. An ironic return to simpler times. But nothing is simple when it comes to changes in the status quo or the science protocol. Free-flowing information makes people nervous.

One parent I spoke with recently told me of an exchange with his son's physician upon learning that the boy has a rare and incurable disease. "The first thing the doctor told me," he said, "was not to go on the Internet. It was almost as if he were afraid we would find something out. Of course, the first thing I did was look on the Internet."

If the information available to patients is increasing, so is the patient's skill at vetting that information. Jonathan Jacoby, the head of the RARE Project (Rare Disease Advocacy Research Education Project), notes that the way people work today has honed their ability to deal with complex information.

"Many patients come from disciplines in which they develop skills and expertise that can be valuable to the clinical process," Jacoby says, pointing to engineers, information technology professionals, and community organizers. Jacoby himself came to the RARE Project with a background in conflict resolution, a useful discipline in patient advocacy.

Describing the risks involved in empowering patients, Jacoby uses a metaphor. "I'd compare patient advocacy to fuel," he says. "If you take fuel and refine it, it can add enormous power. If you don't refine it, it can destroy the engine. If you waste it, you destroy the environment."

Clearly, something must be done with this energy. And it is in the arena of personalized medicine—Jacoby would argue primarily for cancer—that much of the refining is happening via collaborative engagement and education.

The quiet guest at the lunch table—the industry researcher—will bear much of the brunt of health care change as new routes to cures circumvent the now rather dry and creaky big pharma pipeline. Collaborations with academia and biotech firms are paving the way to collaborations between big drug companies themselves, much of it directed at genetic or other biotechnology-based therapies in the field of personalized medicine. And fuel for these collaborations will come in no small part from patient advocacy groups such as Stand Up to Cancer, an entertainment industry initiative launched by cancer survivors to raise cancer awareness and money for research (C&EN, Nov. 3, 2008, page 16).

Such groups, which also include the Michael J. Fox Foundation for Parkinson's Research and the Multiple Myeloma Research Foundation, have clout. They are the voice of the patient. What matters most, however, is the individual patient, the consumer whom Jacoby describes as the traditional source of money to the health care enterprise. That description seems cold, but money is not a bad thing when combined with information and the ability to use it.