Global Cancer Communication and the Internet

ONCNG Oncology, April 2008, Volume 9, Issue 4

According to Internet World Stats, access to the Internet varies greatly based on geographic location, in one estimate (December 2007) ranging from as high as 71% of the population of North America to less than 5% in Africa.

The enormous and growing impact of the internet on healthcare in general, and cancer in particular, has been well described in medical literature. In additionto the truly vast quantities of information about cancer available to patients, caregivers, and other healthcare consumers (searching Google on February 19, 2008 using the term “cancer” retrieved more than 232,000,000 results), Web-based approaches have begun to revolutionize communication between providers, providers and patients, and patients themselves. Infrequently discussed in the existing literature is the specific influence of the Internet on global cancer communication, particularly in countries of the developing world and other environments where access to more traditional sources of healthcare information (eg, medical journals, newspapers, television) remains quite limited. The issue is profoundly relevant in light of the potential for cancer-related information to be easily disseminated, and for communication to be rather dramatically enhanced, in any setting where Internet access is available.

According to Internet World Stats, access to the Internet varies greatly based on geographic location, in one estimate (December 2007) ranging from as high as 71% of the population of North America to less than 5% in Africa. Of considerable interest is the recent growth in the use of the Internet, even in regions of the world where the overall availability remains far behind that of the United States. For example, in one analysis, although only 17% of the population in the Middle East was reported to currently have access to the Internet, growth in Internet users in this region increased 900% between 2000 and 2007.

Web-based communication strategies can serve roles in international communities that are similar, or identical, to those now routinely observed in the United States. For example, the Internet can be used to provide quantitative data regarding the experience of individual physicians and hospitals with particular cancers or procedures, including how successful these entities were in achieving objectively measured quality of care standards. Also, information regarding individual drugs to be administered in specific clinical settings, their side effects, and rational therapeutic options can be presented in a variety of languages. Further, Web-based, cancer-related support groups may also be helpful to patients and their families throughout the world.

Cancer in the Developing World

To fully understand the truly unique capabilities of the Internet when it comes to global cancer communication, it is relevant to discuss cancer in the developing world. Following cardiovascular and diarrheal diseases, cancer is the third leading cause of death in developing world countries. Of the approximately seven million deaths due to malignant disease worldwide in 2007, nearly five million were predicted to occur in regions of the developing world. In these countries, the leading cause of cancer-related mortality in males is (as expected) lung cancer (500,000 deaths), while cervical cancer (275,000 deaths) is the most common fatal malignancy in females.

In the developing world, approximately 10% of all cancer-related deaths are believed to be related to tobacco use, and this percentage is certain to increase as the epidemic of cigarette smoking advances in these countries. Recognizing the role played by tobacco and preventable infectious disease (eg, human papilloma virus, H. pylori, hepatitis B virus, human immunodeficiency virus, etc) in the pathogenesis of multiple cancer types, it has been estimated that more than 50% of all malignant diseases could be prevented by implementing systemic health initiatives and reforms (eg, effective tobacco control, infection prevention initiatives, active vaccination programs). Considering the morbidity, mortality, and substantial costs associated with malignant diseases in developing world countries with extremely limited funding available for all health-related initiatives, the profound importance of educational and other public health eff orts focused on cancer prevention simply cannot be overemphasized.

Internet-Based Cancer Communication in the Developing World

Developing world countries will likely have major, and often quite distressing, limitations on the availability of oncology specialists, opportunities for consultative services, medical libraries, and educational materials directed to cancer patients. It is realistically possible that Web-based strategies can assist in a highly meaningful manner in overcoming some of these serious deficiencies.

Web-based tumor boards can be organized that permit physicians in remote regions to receive advice on patient management from cancer experts in regional centers, or major cancer centers in different parts of the world, who might agree to provide this educational service. It is also reasonable to suggest that consultations conducted through this mechanism could assist local physicians in the developing world in their eff orts to provide adequate, even if clearly not “state-of-the-art,” treatment for cancer patients in a setting where facilities (eg, linear accelerators) and medications (eg, targeted anti-neoplastic therapy; bone marrow supportive factors) are not available due to cost or geographical considerations (eg, rural clinic). Cancer experts, working together in an Internet-coordinated community, may be able to design rational and innovative strategies to deal with complex management issues.

For individuals in the developing world with access to the Internet, sites focused on cancer patients can serve an important role by providing relevant information (eg, treatment options, strategies to manage complications of therapy). As with global Internet-based tumor boards that can enhance interactions between physicians, this method of communication can serve a unique role in the developing world (again, assuming access to the Internet) and enable patients to share their experiences and strategies to optimize quality of life during and following treatment.

It is relevant to note that the Internet can also serve as a valuable source of data regarding differences and similarities between cancer patients in various locations throughout the world. This information may permit cancer-related educational and support programs to be designed that fulfi ll unique needs of specific patient populations, based on factors other than socio-economic status (eg, language, education, religion, culture).

Global Communication Related to Clinical Trials

It is recognized that the revolution in our understanding of the molecular events that control the establishment and progression of cancer has led to the development of a large number of exciting novel anti-neoplastic drugs. In an eff ort to examine these agents as effi ciently as possible, many oncology-oriented pharmaceutical and biotech companies have elected to conduct an ever-increasing proportion of their clinical cancer research eff orts outside the borders of the United States. Klitzman and colleagues note, in the January 2008 issue of IRB: Ethics & Human Research, that it is reasonable to speculate that the Internet can serve as an important source of information for cancer patients in specific sites around the world where such studies are being conducted, both for the purpose of recruitment and to assist in the process of providing adequate informed consent. This informed consent process, which will require input from local investigators and governmental regulatory bodies—and organizations focused on ensuring the ethical conduct of research involving human subjects—should include discussions of possible benefi ts and risks for study participants that are specifically relevant to unique characteristics of the population (eg, language, education, culture).

Ensuring adequate quality-control for the information provided while obtaining “informed consent” is a process particularly suitable to the Internet. Each step in the process (eg, discussion with patient, “signature” of the patient and a witness not involved with the study team or study sponsor) can be documented and audited. Finally, it is critically important to recognize in any discussion of the use of Web-based strategies for global cancer communication that the fundamental openness of the Internet also means that considerable effort must be undertaken to ensure that the information being viewed is objectively valid and not potentially harmful to the welfare of individual patients or the general public.

The Internet has the potential to serve a truly unique role in global communication regarding cancer and its management. Th e successful attainment of widespread international access to the Internet may be a key step in filling a serious void in the provision of quality information that is highly relevant to both individual cancer patients and all members of the world community.

OncNG Physician Editor-in-Chief Maurie Markman, MD, is vice president of clinical research at the MD Anderson Cancer Center in Houston, TX.