Online Health Resources - The Medical Data Revolution

Since the 1980s, information technologies and the Internet have transformed the field of medical research. Before launching a medical research project, a scientist first must know what has been done in the area he or she plans to study. The initial step, for instance, for a researcher who wants to find a cure for Alzheimer's would be to analyze previous data on the subject. Only then could the researcher formulate new theories and design experiments that advance the field. Before the Internet and the widespread use of computer databases, researchers seeking such information were required to spend days at medical libraries, sifting through thick journal indexes that cataloged thousands upon thousands of past journal articles by subject. The advent of computer databases changed all that. Huge medical indexes were put in digital form, which allowed researchers to compile afull list of research articles in minutes instead of days. As of late 2004 a number of databases existed online. Medline/PubMed, which is maintained by the National Library of Medicine, is one of the most comprehensive and widely used of these databases. In 2004 PubMed contained citations and abstracts summarizing papers published in nearly 4,800 biomedical journals in the United States and seventy other countries. By simply going online to PubMed and typing a query, a researcher can track down every published paper on most medical topics.

The ability of computers and the Internet to store and transmit scientific data also has transformed the way medical research is conducted. The Internet allows scientists from all over the world to share data on diseases and patient attributes. Computers can then perform statistical analysis on disease data in relation to various aspects of patient histories, such as age, geographic location, and even the presence of other diseases.

The Centers for Disease Control's National Center for Health Statistics (NCHS) database contains statistics on a variety of diseases including arthritis, heart disease, HIV, and even tooth decay. All this information is freely available for scientists to use in their research. In 1999, for example, West Virginia University and scientists with the CDC combined data from the NCHS and the U.S. Census to build a U.S. atlas showing heart disease in women by location, age, race, and income. Among other things, the atlas confirmed earlier studies that revealed that women in poorer communities had higher levels of heart disease than their counterparts in affluent communities. The atlas also provided a reference resource for government officials and health-care workers, letting them know exactly where their time and money should be spent on heart disease awareness programs. The State Center for Health Statistics in North Carolina employed CDC data to determine the mortality and life expectancies of its residents. The resulting January 2002 study—entitled "Healthy Life Expectancy in North Carolina, 1996–2000," by Paul Buescher and Ziya Gizlice—determined that the life span of the average North Carolinian was 75.6 years. They also calculated that the average person would likely spend some 12.6 years toward the end of life in poor to fair health. Using such a study, the state could forecast how

TABLE 8.8

Number of candidates waiting for organ transplants, January 2005
*All candidates will be less than the sum due to candidates waiting for multiple organs
SOURCE: "Waiting List Candidates as of Today," The Organ Procurement and Transplantation Network, January 2005, http://www.optn.org/data/ (accessed January 17, 2005)
*All	87,189
Kidney	60,418
Pancreas	1,661
Kidney/pancreas	2,432
Liver	17,244
Intestine	195
Heart	3,270
Lung	3,895
Heart/lung	171

much money would be required to support the state's elderly population far into the future.

Computer databases and the Internet have also become invaluable resources for organ and tissue donor programs. Treatments for cancers such as leukemia sometimes destroy the bone marrow that produces red blood cells, white blood cells, and platelets in the blood stream. To replace the bone marrow, a transplant from another person is needed. Finding compatible bone marrow, however, is very difficult. Typically, a match will not even exist within the same family. The National Bone Marrow Donor Registry is a computer database of people who have agreed to donate their bone marrow to those in need. A doctor with a patient in need of a transplant can simply log onto the registry via the Internet and pull up all possible matches in the country. The Organ Procurement and Transplantation Network (OPTN) maintains a similar database for internal organ transplants, including kidney, pancreas, heart, lung, and intestine. OPTN's secure transplant information database keeps track of exactly which patients are in need of a transplant. Table 8.8 displays the list of candidates who were waiting on the OPTN on January 17, 2005. All necessary forms and patient histories are also included in the database. Should a donor's heart become available in a medical facility anywhere in the United States, the attending physician can access the database to find patients who are waiting for a new heart.