The dramatic change in healthcare delivery from private practitioner-based to managed care created a vacuum of responsibility for self care that the patient has needed to fill. In response to this, the lay cancer community has created a sophisticated model for offering and disseminating updated information for the Web-savvy information seeker. Its success has accelerated a fundamental change in the patient–doctor relationship which could not have been anticipated even 10 years ago.
Patients begin to assume new roles and responsibilities
The way in which patients acquired health and medical information traditionally followed a doctor-centric “You come, I listen, and I speak” model. However, after World War II, more collaborative models began to evolve. To bolster their own information base, patients used traditional sources: the library, newspapers, magazines, books, and friends. Childcare books from Dr. Benjamin Spock and others spoke to generations of parents on what to do, and what not do, about common health and developmental problems in children.
In the 1980s, people became more interested and proactive in their health as the tobacco law suits linking cancer and smoking became publicized and the early results of heart disease studies became better known. This information suggested that diet, exercise, and avoidance of smoking were the responsibility of the patient, not the healthcare system. Better educated people started to ask their physicians more questions.
The American Cancer Society (ACS) continued to be the public face of the American cancer community, but still was quite doctor-centric in its outlook. It challenged quacks but not its own physicians’ inability to communicate with the public. Its information models stayed “inside the box.” But Yankee ingenuity and resourcefulness soon filled an unmet and unrecognized need in the brain tumor world. Foundations were created by people personally affected by brain tumors: The National Brain Tumor Foundation (NBTF), The American Brain Tumor Association (ABTA), The Brain Tumor Society (TBTS), the Florida Brain Tumor Association (FBTA), and many others began to fund research in this area and provide help to the afflicted. People who had “been there” developed a database with pamphlets and networks of useful professionals to help others through the trauma of a brain tumor diagnosis. These foundations targeted brain tumor research that had been overlooked by traditional ACS and National Cancer Institute (NCI) funding. These heroes’ ideas were soon copied in other countries, and patient-centered brain tumor foundations sprung up in Australia, England, France, and elsewhere in the 1990s.The end of an era
The healthcare “system” in the USA as we knew it started to unravel in the 1990s. Healthcare became more of a free-market business that placed greater responsibility on patients, beginning their long transformation into “healthcare consumers.” Significant developments
that played a part in this included an explosion in the alternative health market, with vitamin and supplement makers making all sorts of claims about the health benefits of their products (up to and including that they can cure cancer); a lift on the ban prohibiting direct-to-consumer advertising promoting prescription drugs; the rise of Health Maintenance Organizations (HMOs), followed by limitation of treatments by HMOs and insurance companies based on cost; and the purposeful delaying of payment by insurance companies to physicians and hospitals. These and other events left patients with more questions than answers, questions that could hardly be accommodated during a 10-minute, HMO- or third-party-reimbursed visit. The result, predictably, frustrated doctors and patients.
Within the last 10–15 years, people with brain tumors had an alternative: they could use the Internet to find information about their condition, research treatment options, and seek other providers. Now, patients had online access to exactly the same data as practicing physicians. They could do their own MEDLINE or PubMed search. Brain tumor centers not only advertised in Time magazine to attract patients, but they had one-button connections on favorite websites as well. In a space of 10 years, a world library of all the available brain tumor data along with analysis, commentary, and personal anecdotes has filled cyberspace. The only thing lacking in this equation was context. Whose responsibility was it to put into the proper context the hundreds of pages of downloaded information patients started bringing with them to office visits?Online health information and the evolving patient–doctor relationship