WASHINGTON – A coalition of cancer researchers, patient advocates, oncologists, and pharmaceutical companies has issued a 13-point call to action to create a path toward better value in cancer care.

The white paper was released at Turning the Tide Against Cancer on Oct. 9. The meeting was sponsored by the Personalized Medicine Coalition, the American Association for Cancer Research, and Feinstein Kean Healthcare, a consulting firm.

Those organizations convened an initial “Turning the Tide” meeting in 2012. At that first gathering, participants discussed how the rapid-fire scientific developments in oncology could be incorporated into clinical care without bankrupting physicians, payers, or patients.

In the 2 years since, a task force met and created the new call to action, which focuses on how to foster a shift toward patient-centeredness in research and care, and how to address cost and value in ways that align with patient-centeredness and that do not hamper innovation.

Among the recommendations:

The government should encourage clinical trials that enable study of multiple drugs simultaneously.
The Food and Drug Administration should modernize its regulation of personalized medicine.
Congress should help fund the development of cancer quality and outcomes measures.
Federal and state marketplace plans should offer broad coverage of oncology drugs and services.
The government should do more to standardize clinical decision-making tools and make them available to the public in an easily-understood format.

“We must not only continue to support cutting-edge cancer research, but also engage patients as partners throughout the continuum of research and care because, by doing so, we can develop a better understanding of their individual needs and preferences and ensure that they receive the most effective treatment for their particular disease,” Dr. Margaret Foti, chief executive officer of the AACR, said in a statement.

The new report “demonstrates the value of shared commitment and collaboration,” John J. Castellani, president and CEO of the Pharmaceutical Research and Manufacturers of America, said at the Turning the Tide meeting.

The rising – and in some cases extremely high – cost of oncology chemotherapies and personalized medicine diagnostics has attracted growing attention as these treatments gain more widespread use.

Mr. Castellani sidestepped the expense issue, but other speakers took it on directly.

“I personally am very weary of drugs and biologics being the lightning rod in this discussion,” said Patricia J. Goldsmith, CEO of CancerCare, a patient support organization. “There’s a whole host of other cost drivers and factors in the delivery of oncology care that are not really being discussed,” she said at the meeting.

“All of us in the medical community have an important role to play in restraining costs and creating value for our patients,” said Dr. Richard L. Schilsky, chief medical officer of the American Society of Clinical Oncology. The high cost of therapies and increasing copays and deductibles play a role in rising cancer care costs, but “so do the practices that doctors follow,” as well as patient expectations, he said.

Patients need to be well-informed about what can and can’t be achieved, doctors need to practice evidence-based medicine, and reimbursement needs to be overhauled to focus on spending time with patients instead of just getting paid for a service, Dr. Schilsky said at the meeting.

He suggested that value can’t be a static concept, especially when it comes to chemotherapies. A newly introduced drug might provide value initially, but less so over time as other, better therapies become available.

ASCO has spent a year developing a framework for physicians and patients to discuss value, he said. The idea is to have a user-friendly way for patients to compare the value of various treatment approaches in consultation with the doctor. That project is close to completion, said Dr. Schilsky.

Dr. Michael Kolodziej, national medical director for oncology solutions at Aetna, agreed that the patient needed to be made more of the focus of cancer care, from drug development into the physician’s office. In clinical trials, “we are not recording what’s important to patients,” he said at the meeting.

But he also took drug makers to task for developing too many me-too products. “We do not need another [tyrosine-kinase inhibitor] for chronic myelogenous leukemia,” said Dr. Kolodziej. Manufacturers should be rewarded for innovation, but “we have dissociated true innovation from reimbursement,” he added.

Ms. Goldsmith, who was recently diagnosed with cancer, said that even with her background, the conversations with her surgeons and oncologists were difficult to navigate. “We have to do better by patients,” she said.

Dr. Schilsky agreed. “Doctors, like everybody else, have varying communications skills,” he said. “But the one thing doctors don’t have is time.”

He said that physicians should be equipped and encouraged to spend that time talking with patients.

aault@frontlinemedcom.com

On Twitter @aliciaault

Cancer community turns focus to ‘value’