4 in 10 cancer patients sought information via the Internet, according to a new study to be published in the April 1, 2009, issue of the peer-reviewed journal, Cancer.
The downside of information-seeking cancer patients, according to the study, is that 1 in 4 of these patients received the drugs off-label — that is, for a use not approved by the FDA. In these cases, the cancer drugs have been used for patients in both late and early stages of cancer– the latter for which a drug might not be approved for use.
The study looked at the relationship between information-seeking and awareness of therapies targeted to colorectal cancer patients. The hypothesis was that information-seeking patients who ask their physicians about cancer drugs would be more likely to receive them than patients who don’t look for health information.
The outcome: information-seeking patients for colorectal cancer therapies were 2.83 times more likely to have heard about the therapies — and 3.22 times more likely to receive these therapies — than people who don’t seek information.
The study was based on 633 colorectal cancer patients registered in the Pennsylvania Cancer Registry, focusing on their information-seeking habits and the specific therapies of Avastin and Erbitux.
The paper, Colon cancer patient information seeking and the adoption of targeted therapy for on-label and off-label indications, will be published in print in the April 1, 2009 issue of Cancer.
Health Populi’s Hot Points: This research raises a lot of questions on citizens’ use of health information. On the basis of an N=633, it could give ammunition to a cadre of naysayers who continue to reject the power of patients in managing their care.
Notwithstanding, the ePatient movement has been a positive, empowering phenomenon for decades. For more on the roots on the movement, see the wise tome shepherded by the late eHealth guru, Tom Ferguson, ePatients: How They Can Help Us Health Healthcare, downloadable on the e-Patients.net website.
This movement has organically grown one patient at a time. An early pioneer is Gilles Frydman of ACOR, a collection of cancer communities that continues to prove that people empowered by health knowledge do better than those without access to this wisdom. Gilles continues to morph and enhance ACOR using the power of health citizens’ shared experiences with the evolution of Internet tools.
Manhattan Research‘s latest Cybercitizen Health survey found that nearly 150 million Americans seek health information online; 95 million of these people are searching for prescription drug information on the Internet. Furthermore, 60 million Americans use Health 2.0 tools to manage aspects of health.
Information-hungry patients will demand the newest treatments based on the information they find. Without the wisdom of the crowd (both clinical and consumer voices), ACOR and similar sources that help health citizens get to the best information for their personal health situations will be arming the most empowered, knowledgeable health consumers.