Access to Cancer Information, Part II: The Internet Challenge
By Susan Molloy Hubbard
For those who do not use the web, internet access to many of these resources is also available on CancerNet e-mail, the NIH’s gopher server, and other gopher servers around the world. An e-mail user need only submit a message to the ICIC’s mail server (firstname.lastname@example.org), with the word "help" in the body of the message to get a table of contents and instructions for getting information. CancerFax, a fully automated fax-back on demand service, provides 24 hours, seven-days-a-week access to much of the information on CancerNet as well. Individuals pay only the cost of the toll-free telephone call (1-800-402-5874 or, in Maryland, call 1-301-402-5874) and enter a numeric code at the voice mail prompt to obtain a directory of information by return fax. Like PDQ and CancerNet, CancerFax is updated with new information at the beginning of each month. It currently fulfills 7500-8000 information requests each month.
CancerNet is organized into three major paths that present appropriate resources to audiences with different information needs. One path is designed for patients and the public, one is for health professionals, and one for researchers. The paths are organized to provide the users with choices about the information that is available and to facilitate navigation. CancerNet also offers a search mechanism to assist users to find information on the server by topic. A forms-capable search mechanism enables users to search for active clinical trials in PDQ that are accruing patients, a feature that internet e-mail and gopher services cannot support. The clinical trials database can be searched by diagnosis, stage, type of treatment, sponsor, specific drug, phase of clinical investigation, protocol ID, and/or city, state, and country.
CancerNet contains an extensive collection of information for patients and the public. ICIC is using web software to convert PDQ’s patient-oriented summaries into multi-media files that feature graphics, sound clips, and links to a glossary. A breast cancer prototype is currently available, and a prostate cancer prototype will appear soon. To assist patients and the public to make informed decisions about their options for care, we are creating consumer-oriented summaries that provide information on active clinical trials in PDQ in layman’s terms. The summaries feature links to a sound-enhanced glossary. Each summary provides the name and phone number of a physician participating in the study and a link to the complete summary for those who want more detailed information. Users can search for consumer-oriented trial summaries by cancer diagnosis, type of treatment, sponsor, drug, phase of clinical investigation, ID number, city, state, and country. Summaries for all of the active breast, prostate, and brain cancer trials in PDQ are currently undergoing review by patient advocates who are evaluating their level of detail, format, and readability. Summaries for the other clinical trials will be created based on this evaluation.
CancerNet also provides access to the table of contents and the abstracts of articles published in each issue of the Journal of the National Cancer Institute. In the near future, an electronic version of the Journal of the National Cancer Institute is under development, and it will support interactive hypertext links to novel representations of methodology, analytic programs, high resolution digital images, other research reports, and software tools.
Like most web sites, CancerNet features links to other sites of interest worldwide. Users in each of the three pathways can currently link to NCI-funded cancer centers and cooperative groups, advocacy organizations, support groups with web sites, and a variety of scientific, governmental, and private web sites that provide appropriate content geared to that group’s particular information needs.
A content review board ensures that information on sites to which CancerNet links is accurate, current, and of high quality. Each site is carefully reviewed by two content experts who determine if it meets the following criteria. Is the information on the site related to NCI’s mission? Does it provide useful information that CancerNet does not already provide, which would be useful to our users? Is the information accurate and up-to-date? Is there an acceptable process in use for review to maintain the quality and currency of information on the site and its hyperlinks to other web sites? Does the site contain any incorrect or misleading information on which users would base important health care decisions? Are there deficiencies that compromise meaning, lead to misinterpretation, or make it difficult to locate specific data? Each site that CancerNet links to is re-reviewed every six months to ensure that its quality is maintained. These criteria and an electronic application form requesting inclusion as a linked resource on CancerNet can be found under global resources.
CancerNet also provides links to NCI’s Cooperative Breast Cancer Tissue Resource Database; NCI-NAPBC’s Breast Cancer Specimen and Data Information System; NCI’S AIDS Malignancy Bank Database; NCI’s Cooperative Human Tissue Network; and NCI’s Cooperative Family Registry for Breast Cancer Studies. All offer access to tissue collections and associated clinical and outcome data from patients for researchers working in the field. There are also links to the web-based resources of the NLM and the genomic and genetic resources of the National Human Genome Research Institute.
For those without Internet access, access to these resources is provided through two toll-free telephone services that provide customized cancer information. The Cancer Information Service (CIS) is a nationwide network of regional offices supported by the NCI that can be reached by dialing 1-800-4-CANCER (1-800-422-6237). Trained CIS counselors can perform customized PDQ searches and referrals to cancer-related community resources. The toll-free telephone service for health professionals can be reached by calling 1-800-345-3300, by faxing a request to 1-800-380-1575, or by sending e-mail to: email@example.com.
Rapidly evolving web-based technology will continue to change the way the biomedical community gives and obtains information, and this technology promises to revolutionize the way that medicine is practiced. Health professionals already have access to huge medical collections, and real-time voice transmissions are making remote participation in web-based classes and conferences possible. Soon, physicians may be able to document management decisions and share medical records, laboratory results, digitized images, and full motion video clips regardless of time or distance. With encryption and digitized signature authentication, clinical trials data submission could take place on the Internet, thus opening doors for innovative methods of remote patient consultation, evaluation, treatment, and monitoring once legal considerations such as licensure, accreditation, reimbursement, and liability for teleconsultation are addressed.