Cancer can be a major financial burden on patients and their families. It is the second most expensive disease in the US, with annual costs estimated in excess of $200 billion.
Cancer can be a major financial burden on patients and their families. It is the second most expensive disease in the US, with annual costs estimated in excess of $200 billion. And the number of cancer patients continues to increase, with approximately 1.4 million new diagnoses made each year. The cancer burden is large and increasing; however, information technology tools have the potential to help manage this problem. As new treatment advances continue cancer’s transition from an acute to a chronic condition, disease management programs offer a supportive infrastructure to assist oncology professionals and other healthcare providers in the screening and ongoing management of cancer patients.
In the late 20th century, the field of clinical informatics exploded to include decision analysis, program design, infrastructure support, and data reporting, all of which facilitate the accumulation and distribution of knowledge in cancer management. Internet sites provide a rich source of information for cancer patients eager to find the optimal treatment and best oncology care providers. Performing a Google search using “cancer” reveals millions of sources offering both high-level research and individual needs information. The content posted to these websites not only assists individuals with cancer who are searching for advanced treatments, but also contributes to preventive service delivery and ongoing
supportive care. Caution and oversight by healthcare providers is an ongoing challenge, however, as the reliability and credibility of information on the Internet is only as good as its source.
Health risk assessment (HRA) tools are available online in various forms, including questionnaires that can be used to evaluate a patient’s risk of disease development and also identify potential prevention methods. These tools can identify health risk factors, lifestyle factors, and behaviors contributing to cancer risk. The evaluation of readiness to change dynamics and employment of behavior modification strategies and health coaching are approaches for the prevention and management of cancer. Health plans and disease management companies use health risk assessments to identify individuals for participation in disease management programs. Individuals deemed to be “at risk” for cancer can be identified for prevention and screening. Patients with a history of cancer can be identified for chronic care management and follow-up surveillance.
Episodic management during cancer therapy is less common due to the timing of HRA completion, which generally does not correspond with initial diagnosis and treatment. Unfortunately, this group of cancer patients has the greatest need for cancer disease management, and other tools and strategies are needed to identify disease management program participants. State-of-the-art disease management programs utilize advanced information technology to provide coordinated systems that assist the delivery of care. The use of information systems and IT tools to create tumor registries, decision support programs, comparative databases for benchmarking, and research opportunities holds great promise for cancer care. Pure and applied research has been accelerated thanks to rapid online communication and Internet access to online collections of peer-reviewed
journals. The creation of clinical data repositories has greatly improved the delivery of information to patients and oncology professionals. There is hope too, that the application of quality process measures and outcomes assessments will be aided by these same technologies and will improve the quality of life for cancer patients, at a reduced cost.
For newly diagnosed cancer patients, online resources such as NexProfilerTM Treatment Options Tools provide interactive decision support. This tool enables patients and their healthcare providers to make better-informed treatment decisions using information from evidence-based, peer-reviewed medical literature. This tool is available on websites such as CancerPage.com and Cancer.org. Clinical IT systems are able to keep track of guidelines, store patient information, and track the progress of individuals and large populations over time. Medical management tools, including the analytical and operational use of large claims databases, allow for the rapid deployment of information on complex clinical processes to oncology nurses and patients at the point of care. Decision support created through a centralized collection of healthcare claims data and cancer registries has provided deep insight into cancer management at the population and individual level.
Increasingly, information technology is being used to improve laboratory testing and analyze newly developed tumor markers and other genomic information that is used to diagnose patients, defi ne optimal therapies, and conduct research. Such information can potentially be used to further refine and direct the management of cancer patients and coordinate hospital-based and clinic-centered care delivery. Biometric devices are even fi nding their way into home testing kits and devices used to monitor medications—such as prothrombin testing devices for individuals on anticoagulant therapy—and monitor the ongoing status of cancer patients within disease management programs. Individuals are becoming tethered to intelligent systems and call centers by devices that permit these programs to identify patients who are in the early stages of disease relapse or are dealing with treatment complications, allowing for an easier transition to a more appropriate treatment for the patients in a timely manner.
IT tools are expanding into the realm of cancer survivorship as well. Follow-up cancer care and surveillance are important, and there are a variety of online tools available to help with this. The Institute of Medicine recommends the use of a Survivorship Care Plan, which has resulted in the development of a number of such tools; the Lance Armstrong Foundation has a tool that can be found at www.livestrong.org. Even more extensive tools are being developed by the American Society of Clinical Oncology to promote adherence to guidelines for treatment and follow-up recommendations for different cancer types. Currently, survivor care plans exist for both breast and colorectal cancer and can be accessed at www.asco.org. Tools such as these play an important role in the management of cancer survivors. Many will continue to see dozens of healthcare providers over the remainder of their lives; having documentation of their diagnosis and treatment history, as well as recommended intervals for follow up evaluations, provides an invaluable tool for both survivors and future healthcare providers.
No discussion of healthcare information technology would be complete without mentioning that medical ethicists are concerned that greater use of IT will increase the risk that individuals’ personal information will be misused or misdirected. The inappropriate use of personal and privileged information can lead to serious consequences. HIPAA created legislation that has addressed consumers’ concerns regarding the security of their personal information.
The release of private information to certain recipients, such as employers or insurance companies, is on the minds of individuals concerned that existing diagnostic information or sophisticated genomic assessments of future risks might adversely affect their insurability and/or employability.
Information technology currently plays an important role in the management of cancer patients, a role that may dramatically expand in the near future. It is of critical importance that these capabilities are appreciated and appropriately handled as we move into the 21st century.
Ms. Parkerson is vice president for Oncology Services with Matria Healthcare. She is a certified oncology nurse and certifi ed case manager and has served in advanced nursing practice and clinical leadership positions in oncology disease management. She is a member of the Oncology Nursing Society and Case Management Society of America and has special interests in clinical information systems design.Dr. Fetterolf is the executive vice president for Health Intelligence at Matria Healthcare. He is a fellow of the American College of Physicians, the American College of Physician Executives, the American College of Medical Quality, and the Academy of Healthcare Management. He is president-elect of the American College of Medical Quality, and has served on the board of Directors of the Disease Management Association of American.