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Panel of Experts Discuss Strategies for Improving Access to Cancer Care

The Presidential Symposium, “Cancer Care in America: Hearing the Voices, Making It Better,” grew out of the interest of ASCO President Margaret Tempero, MD, in issues related to barriers to high-quality care faced by patients. Those barriers are many, and speakers outlined the challenges to be faced in changing systems, policies, institutions, and individual attitudes.

“The issues of cancer care in America are everyone’s issues,” said Harold P. Freeman, MD, Director of the Center to Reduce Cancer Health Disparities of the National Cancer Institute. Dr. Freeman noted that although profound advances in biomedical sciences have been made, not everyone is sharing equally in the clinical promise of these advances. Poverty, cultural attitudes, and social injustice prevent some patients from reaping the benefits of new treatments. Dr. Freeman was the chief architect of the American Cancer Society’s project on cancer in the poor.

“The war against cancer has not been fought equitably on all fronts,” he said. “To win this war, we must apply what we know at any given time to all people. The discovery to delivery ‘disconnect’ is a key determinant of the unequal burden of cancer.”

Dr. Tempero believes that access to high-quality care is a critical goal. Among the access issues she outlined are the right to prompt care, high-quality care, and care through participation in clinical trials—the types of care denied to many patients because of the financial issues faced by both patients and care providers.

Dr. Tempero described changes made in the Medicare Modernization Act (MMA) of 2003 that could adversely affect access to cancer care by reducing reimbursement costs to physicians. “I’m concerned that the effect on practice may be to limit care to non-Medicare patients, that elderly patients faced with transportation issues won’t get the care they need, that there will be fewer patients enrolled in clinical trials, and I’m hearing that some oncologists are thinking of retiring,” she said. “ASCO will explore every feasible avenue for legislative or regulatory action to maintain current resources.”

Much of the focus is on “quality,” and Jane Weeks, MD, MSc, of Dana-Farber Cancer Institute, defined that concept for the audience. “Quality is doing the right thing and doing it well,” she said. It can be measured in terms of structure, process, and outcome, in one of “two flavors: one-time studies or ongoing monitoring systems.” Measuring quality can lead to better care by identifying problems, providing motivation for change, and evaluating interventions. “It can also shift patient volume to higher quality providers, by way of a ‘consumer report’ for patients or third-party decisions,” she said.

The challenges to be faced in developing high-quality measures are many. “Case identification is hard because registries are slow, and data may lack clinical detail and lack outpatient care [information],” she said. “And we all know that chart abstraction is very expensive. [institutional review boards] typically require informed consent for record review, and the Health Insurance Portability and Accountability Act presents privacy challenges.” But, she added, “we’re oncologists, and we routinely do things that are routinely hard; we can do it.”

Deborah Schrag, MD, of Memorial Sloan-Kettering Cancer Center, discussed the challenges faced by patients. “The health care system is frighteningly complex, and vulnerable patients need help navigating it,” she said. The concept of a patient “navigator” has been successfully used for many underserved populations to boost health care compliance and follow-up. “While these navigators fill a void that combines many roles, the concept leaves us unsatisfied; it bothers me that we even need navigator models of care,” Dr. Schrag said. Her six-point strategy to improve quality and delivery of care includes investment in clinician and patient education and the creation of the technologic infrastructure to support a nationwide electronic medical record system. “Using navigation as a guiding principal, we have seen that quality can be improved,” she said.

One way in which quality of care can be improved is to solve the problems associated with the declining number of patients enrolled in clinical trials, according to Lynn Schuchter, MD, of Abramson Cancer Center. “Clinical research improves cancer care, sets standards for optimal treatment, and is necessary for treatment advances,” she said. Barriers to clinical trial access, however, are numerous. Patients mistrust the clinical trial process and investigators, and may lack insurance coverage. Physicians see the process as cumbersome, overly restrictive, and expensive. Although Medicare provides coverage for patients over age 65 who participate in trials, others must depend on their insurance or grants to cover costs. In response, some states have developed legislation or consensus agreements with insurance companies to cover some clinical research participation costs.

A January 2004 survey of ASCO members determined that less than one-half of responding physicians even knew whether their state had such laws or agreements, and their existence did not affect the number of patients enrolled in studies. “We learned that 96% of physicians wanted to enroll more patients but that paperwork, eligibility limits, and reimbursement were barriers,” said Dr. Schucter.

Dr. Schuchter also noted that a centralized review process would eliminate some of the bureaucratic and redundant reviews of multicenter studies but that institutional and regulatory barriers currently block this option. “But this issue of enrolling more patients is on the front burner for many groups,” she said. “Government, care providers, and patient advocacy groups all see the value and are willing to work together.”

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