Patient-Centered Oncology Care: Many Obstacles in the Way

Pam Harrison

November 11, 2016

Many critical barriers must be overcome if the desired goal of providing patient-centered care in oncology is ever to be met, leaders in the field agree.

The barriers are outlined in a report titled "Empowering Patients, Engaging Providers. The Future of Patient-Centered Care in Oncology," just published by the Association of Community Cancer Centers (ACCC). The report was put together after the ACCC's fourth annual Institute for the Future of Oncology forum, held in June 2016.

The forum participants were leaders in the oncology field and included oncologists and cancer program executives from hospitals, oncology practices, and healthcare systems across the country, as well as representatives from patient advocacy groups, researchers, and supportive care providers. They concluded that "with a few exceptions, most patients do not receive care that is fully patient-centered."

Barriers preventing the oncology community from achieving this goal are numerous and not easily remedied, they concluded, but they must be overcome if medicine is ever to get away from the current provider-centered model of care. Among the barriers identified were the following:

  • Misaligned financial incentives: Forum participants singled out the current fee-for-service (FFS) system as the single most important barrier to providing patient-centered care. "Support services such as patient navigators, nutritional counselling, and psychosocial support services are rarely reimbursed," they point out. Providers in turn complain that payers dictate what drugs they can use by limiting them to therapies approved within their formulary. Payers also stipulate that some drugs must be delivered in a hospital or office setting, discouraging home care.

  • Bureaucracy: Providers complain that the business side of medicine, especially payment issues, simply gets in the way of providing the care patients need and that requirements for precertification for many services is not benefiting patients. Said one forum participant, "It's just mind-numbing trying to deal with the bureaucracy of medicine and get the elements of care patients need."

  • Fragmentation: Participants suggest that both institutions and payment systems have been designed to meet the needs of providers, not patients, and that patients end up in "silos" of care rather than being cared for holistically. "We have a fundamentally fragmented system that we're stuck with right now and we have to figure out how to reconfigure it," they commented.

  • Lack of education: "Physicians simply do not receive the training required to provide patient-centered care," the report's authors suggest. Nurses, on the other hand, have been providing patient-centered care for decades and are better trained to support patient needs than are medical students. The ACCC is making every attempt to foster the multidisciplinary teams needed to provide patient-centered cancer care.

  • Lack of transparency: The current lack of transparency in terms of information-sharing prevents peers from learning from each other and teaching each other about best practice approaches that would ultimately benefit patients.

  • Lack of interoperability: "Electronic health records (EHRs) can rarely communicate across care settings, even within a single health-care system," forum participants point out. This is clearly counterproductive to patient-centered care and represents a real obstacle in helping streamline the many aspects of cancer care that patients usually need to complete a therapeutic protocol.

  • Industry consolidation: The "mega-systems" that are the end product of the healthcare industry consolidating its assets are making it much more difficult for patients to receive individualized care, which is central to the patient-centered delivery model.

  • Time: Providers meet with cancer patients for very limited amounts of time, which is at loggerheads with arriving at a patient-centered view of their needs.

  • Complexity of treatment: Treatment of cancer is complex, and arriving at the right treatment protocol for individual patients is not helped by a lack of head-to-head trials that might tell oncologists which protocol is best for a given patient.

  • Complexity of the system: Patients often have to coordinate their own care, and many of them are clearly not equipped to do this successfully.

  • No patient input: "The definition of patient-centered care is often developed without considering the patient's wants and needs," participants pointed out. Patients also differ in terms of the kind of information they want from the oncology team or how much they want to participate in decision-making. "It's important to ensure that the patient defines the value of the care, not the system," they add.

Comments Show Frustration With System

The report contains several anonymous quotations from participants, including this from an executive with a large nonprofit cancer organization: "Patient-centered care starts with making sure the patients have care, and that when they get access to that care, their values, wishes, and requests are known and respected as part of the process."

"We've evolved into a provider-centered model of care rather than a patient-centered model of care and our institutions, payment systems, and infrastructure have evolved around the needs and the availability of the provider," commented an oncologist who participated in the forum.

Another participant said, "We gave up the right to steer the system, advise the system, gain the trust of the system many years ago when to take fee-for-service, run [with] it as fast as we could.... [Today] there's an absolute lack of trust between all the different elements of this system and that has led to fragmentation. So we're here today trying to reinvent something that has been literally decades in the making."

Key Elements

Forum participants boiled down all of these barriers into key elements that will be central to the provision of real patient-centered care.

These elements include knowing the person, not just the patient.

Improved navigation and coordination of care are also required to help patients through the complexities of cancer care, as are interdisciplinary teams to provide that care.

Reimbursement for services that patients really need also must be appropriate. Better education, presumably for providers but also for patients, is another key element in getting away from a provider-focused model of care.

More effective transfer of EHR information through improved technology connectivity is another key requirement, along with the need for that information to be more transparent.

And providers need better tools to support their decision-making, forum participants noted.

"We still have a lot of work to do in order for patients to receive the quality of care they desire and deserve," ACCC President Jennie Crews, MD, told Medscape Medical News in an email.

"There are many dimensions to the future of patient-centered care and our community cancer centers are prepared to overcome existing challenges and put theory into oncology practice."

Other Oncology Care Models

The need for improvements in oncology care has not gone unnoticed, and new models of care are emerging.

One major initiative is the Oncology Care Model (OCM) being developed the Centers for Medicare & Medicaid Services (CMS) Innovation Center, which was launched earlier this year.

The OCM is Medicare's first large-scale specialty alternative payment model in oncology, and according to CMS, the goal is to improve care coordination, curtail unnecessary services (including emergency department visits, and inpatient admissions), and reduce expenditures.

At this time, approximately 200 physician group practices (about 3200 oncologists), 155,000 Medicare beneficiaries, and 17 health insurance companies are participating in the program.

Using this model, oncologists will be paid for their care of patients with cancer. The initiative includes 24-hour access to healthcare providers for patients who are undergoing treatment and emphasizes coordinated, person-centered care that is aimed at rewarding the value of care rather than the volume of patients.

Participating practices still received reimbursement under the traditional FFS system, but they receive an additional $160 per-beneficiary-per-month payment every 6 months, for as long as a patient remains on active treatment, and there is also potential for performance-based payments.

"With the Oncology Care Model, the CMS has the opportunity to achieve three goals in the care of this medically complex population facing a cancer diagnosis: better care, smarter spending, and healthier people," explained Patrick Conway, MD, chief medical officer and deputy administrator for innovation and quality at the CMS, in a statement made when the initiative was first announced last year.

However, because of its limited scope, the model was less than enthusiastically greeted by the American Society of Clinical Oncology (ASCO) and the Pharmaceutical Research and Manufacturers of America (PhRMA).

"We are disappointed they have chosen to pursue only one model, and one that continues to rely on a broken fee-for-service system," said ASCO Chief Medical Officer Richard Schilsky, MD, in a statement last year.

During the comment period for the proposed model, ASCO offered specific recommendations and highlighted areas where clarification or refinement was needed, but these were not heeded.

The industry organization PhRMA also noted that "as currently designed, the model falls short of the mark and could have the unintended effect of creating patient access barriers to beneficial tests and treatment options, including cancer medicines covered under the successful Medicare Part D drug benefit."

ASCO has developed their own payment model, which was released in 2014 and updated last year. In their proposed Patient-Centered Oncology Payment: Payment Reform to Support Higher Quality, More Affordable Cancer Care (PCOP), the society moves away from the traditional FFS and instead offers a plan designed to enable all oncology practices to deliver higher-quality care at lower cost.

Under PCOP, oncology practices would receive a significant increase in payments for patient services, as compared with what they are receiving now, but overall spending on cancer care would be reduced because the plan would help avoid unnecessary care, according to ASCO.

Payment for oncology practices would be improved in two key ways: It would allow for higher and more flexible payment to support patient care, and oncology practices would be accountable for delivering high-quality, appropriate care.

Dr Crews has disclosed no relevant financial relationships.

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