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Filling the Donut Hole in Oncology Care With Collaboration and Navigation

Evidence-Based OncologyOctober 2016
Volume 22
Issue SP14

To discuss the progress in care collaboration and also what is currently lacking in care practices in oncology, The American Journal of Managed Care® invited Rebekkah Schear, MIA, LIVESTRONG Foundation, and Michael Kolodziej, MD, Flatiron Health.

Healthcare, of late, has seen a lot of movement toward improved care delivery and reimbursement, with several experimental models being tested in the field by CMS and private health plans. The emphasis is on collaboration and communication: data sharing and team-based care can offer providers a multidimensional view of the patient and improve outcomes.

To discuss this progress and what is currently lacking in care practices in oncology, The American Journal of Managed Care® invited Rebekkah Schear, MIA, director of mission delivery at the LIVESTRONG Foundation, and Michael Kolodziej, MD, former national medical director of oncology strategies at Aetna and currently the national medical director of Managed Care Strategy at Flatiron Health. The telepanel was moderated by Joseph Alvarnas, MD, editor-in-chief of Evidence-Based-OncologyTM. Alvarnas is associate clinical professor and director of medical quality, risk, and regulatory management, City of Hope, Duarte, California.

The panel began with Alvarnas asking each participant to define what patient-centeredness and shared decision making mean in oncology care. According to Schear, patient-centeredness is the new paradigm for care delivery, as reflected by major shifts in policy and practice. Considering how complex cancer care is, with the uncertainty and life-changing decisions, patient-centeredness is all the more important. “Reports have come out in 2013 that list 6 core elements of what delivery of cancer care should look like moving forward and how patient-centeredness, shared decision making, coordination of care, a learning healthcare system, all of these things, are sort of embedded in what that might look like,” she said. Although this is being implemented, she believes there’s room for improvement.

What about the potential for information overload? How can patients and their caregivers be effectively engaged in care planning without inundating them with details? Kolodziej explained that oncologists believe they are doing a perfectly fine job in educating patients and including them in treatment decisions. Payers, on the other hand, do not have much insight into how well this is being implemented by oncologists, but he agreed with Schear that there are shortcomings to the process. “The biggest shortcoming really boils down to the fact that when a newly-diagnosed patient comes into your office with, or without, supportive family members or friends, there is just such a knowledge gradient and it’s such a loaded conversation. It’s very hard to process it,” Kolodziej said.

Despite a few unsuccessful attempts, Kolodziej thinks we are currently at a point where there is some bit of standardization of communication systems for use between the members of the team of providers who are caring for the patient. In his opinion, the Oncology Care Model (OCM), which requires a documented care plan based on the Institute of Medicine’s 13-point Care Management Plan, exemplifies this.1 The “major component there is the first dialogue with the patient regarding the treatment plan and expectations from treatment.”

The OCM wants providers to give patients access to all the information that they might need to understand their care plan, once the patients have adjusted to the shock of being diagnosed with cancer. “Because it’s something that we think the patient will need to come back to frequently in order to totally get the entire picture of the complexity and the enormity of the care they’re going to receive,” Kolodziej said.

Cancer Care Plan: Documentation and Communication

Alvarnas asked Kolodziej to provide insight on the importance of documenting the treatment plan for cancer patients, an objective of the Planning Actively for Cancer Treatment or PACT Act.2 Kolodziej emphasized that documentation and processes of care, especially for emergency department visits and inpatient stay, are very important for both the patient and caregiver to understand how care will be managed. Another dimension to this pertains to healthcare reform and integrated care, where poor communication among physicians has been well documented. “A standard means of communication among multiple care management teams is important, especially for Medicare patients,” Kolodziej added.

Documenting the treatment plan creates functionality for patients, particularly post treatment, Schear said. Doing so can help patients and their families find a path of continuity as they adjust to the “new normal” of survivorship. Its important, she added, that all providers, particularly the primary care providers (PCPs), be aware and integrate the patient’s current treatment with reference to what they have gone through for their cancer care. “That’s not just physically, but emotionally. The psychosocial perspective is critical,” said Schear.

To listen to this panel discussion, please click here: http://bit.ly/2fmhT8l

A 2015 survey by LIVESTRONG among cancer patients and survivors found that only 29% of surveyed patients had a written summary of their treatment plan and only 17% said they had difficult care plans. More than three-fourths of survey respondents agreed that their care plans were “incredibly useful.” Schear noted that patients also use the treatment plan to understand their susceptibility to other cancers in the future and the need for additional testing.

Alvarnas emphasized that assuming that patients and their caregivers can navigate all the information they have been provided would be a misstep. Patients with cancer receive care from multiple providers, and care coordination across the board of experts is vital. “Who should lead the coordination of care? How do we align economic incentives to reward that level of coordination?” Alvarnas asked.

Schear agreed with Alvarnas that although there have been big strides on ideas for care coordination, implementation barriers exist. A very common encounter for patients, she said, is lack of communication between 2 of their providers who might be part of 2 different healthcare systems. Patients are often caught making the rounds of PCPs, social workers, psychosocial counselors, oncologists, and surgeons, maybe even nonclinical support. What becomes obvious is the lack of harmony within this team. “I think that ultimately what needs to happen is that there has to be a marriage between an informatics-enabled cancer care system with both face-to-face provision of care and knowing that patient navigators are going to be able to support [coordination] and implementation,” Schear said.

Schear believes that reimbursement policies for the navigators, care managers, and the services is a necessary and important amendment. “Changing this policy is possibly the most significant barrier to increasing the implementation of patient-centered cancer care,” and it can help tackle the challenges of interoperability, she said.

Kolodziej’s concurred with Schear and described the 2 parameters that she presented as “high-tech” and “high-touch.” In his opinion, navigator services mandated by the OCM for Medicare beneficiaries in participating practices is the high-touch way; high-tech solutions, he said, will be necessary for efficient implementation. He believes that fragmented information technology (IT) highways are at the root of existing problems in oncology. Whereas healthcare IT platforms may not be compatible, information exchange and interoperability form the crux of accountable care organizations (ACOs), Kolodziej said. What will hurt an ACO is lack of effective communication with all the involved parties, “because there will be duplication of services, inefficiencies that will lead to higher cost of care and poor outcomes.”

Kolodziej believes that interoperability will help develop Health Insurance Portability and Accountability Act (HIPAA)-compliant health information exchanges that can also include the patient in the conversation. He anticipates a much bigger role for the care provider in the process, in extracting the information and conveying just the right amount to facilitate dialogue.

Developing an Ideal Patient Portal

So how soon can patients and the healthcare system anticipate a technological fix to the existing problem of interoperability? Schear said that several patient-friendly apps have been developed, such as Open Notes, My Blue Health, and Patients Know Best, which ensure patients have access to their health information and a line of communication with their care provider. Schear also highlighted the importance of wearable devices for a more real-time sharing of patient information with their care provider(s). She cautioned, however, that patients and their family caregivers should restrict using this platform to the most important conversations with their care providers.

However, considering the restrictions placed by HIPAA with respect to information sharing, Schear would like to see policy changes keep pace with technological advances so that patients have the ability to access and share their personal health data while simultaneously protecting it. Kolodziej agreed that the evolution of HIPAA is inevitable, and Alvarnas noted an important role for patient advocacy groups like LIVESTRONG in the process.

What does an ideal patient portal look like? Schear appreciated some of the advantages of using the EPIC health IT platform—the flexibility to constantly update information and communicate with your provider. What’s missing, she said, is the holistic perspective—considering the health of the patient in its entirety.

“We are people with emotional, social, spiritual, philosophical, and family-oriented needs and values and wants. There has to be a way for all of that to be reflected both in assessments with our providers, when we’re meeting with them on an ongoing basis, and also in these patient portals, so that any time any of your providers are logging in and taking a peek at what you have going on, they get the whole story of who you are,” Schear said.

Schear and Kolodziej concurred that the patient portal should provide a more patient-centric view to those who access it. Kolodziej added that although these portals were initially developed to fulfill meaningful use criteria, they are evolving to keep up with the changes within healthcare.

Alvarnas pointed out that the healthcare journey is not binary. “It’s not ‘cure or not cure.’ There’s a lot more to caring for someone that may involve acknowledging issues of distress, anxiety, interfamilial difficulties, and also the fact that some patients can’t be cured.” He asked the panelists to address issues of quality of life, palliation, and helping patients achieve their goals of care.

Schear believes that advance care planning (ACP) and palliation should be addressed right at the outset, from the time of diagnosis, and should not be a consideration only when all options have failed. This screams for a navigator and a mechanism that allows care teams to be aware of the patient’s needs and values. The process requires participation by both the patients and their family members in treatment decisions, palliation, and decisions on end of life (EOL) care.

Schear stressed that providers need to make the time for clear, patient-centered communication that involves discussions on every aspect of care—from diagnosis to survivorship. Providers should also support patients as they decipher the impact of their disease and its treatment. Schear believes that an important aspect of providing care is for the physician to understand the patient’s concerns and expectations of their care. This can lead to a shared understanding and development of solutions during treatment.

“I think building that shared understanding is the critical backbone to being able, from a patient-centered perspective, to have these very critical conversations around quality of life, treatment plans, and palliation, and then when it comes to it, hospice and some of those more difficult decisions,” Schear said.

Appreciating the Value of Care

How can we bring all of these considerations into perspective when trying to value them for reimbursement purposes? Kolodziej said that he’s not really concerned with how the healthcare system and physicians would be financially rewarded for bringing about these changes. His concern is with how the physicians can be convinced to change their behavior.

Value-based reimbursement, Kolodziej said, which incorporates execution of ACP, EOL care, and palliative care, will generate healthcare savings and improve patient outcomes and satisfaction. “But how do we get doctors to do it?” he asked. It’s how we get them to do what everybody knows is the right thing to do that’s important, he added. He explained that while at Aetna, he tried to merge behavioral health resources so practices could improve their care strategy for patients.

“I’m a little more worried about how we execute the kind of culture change that needs to happen in order for this to really be realized, to the advantage in the short term,” Kolodziej added. Physicians, he believes, will soon realize how important this is in changing the way care is delivered.

To listen to this panel discussion, please click here: http://bit.ly/2fmhT8l

The onus for behavioral and culture change is not the primary responsibility of the providers, according to Schear. Patients and families need to be educated on this, as well. Palliation, for example, is highly misunderstood and stigmatized—patients and their families need to look beyond their preconceived notions to understand how palliation can assist pain management and improve quality of life throughout the cancer care journey. “Patient education around this issue is absolutely critical. De-stigmatizing the idea of palliative care and removing the fear around the idea that you can still be in active treatment and you can work on improving your quality of life. You could [also] have those discussions with your providers,” Schear added.

So who should be the go-to person to navigate the patient and their family through this process? The navigator may not necessarily be one person. The function of a care navigator—communication, coordination of care, hand-offs, and serving as the patient touch point—should be the responsibility of the entire team that is caring for the patient, according to Kolodziej. “The captain of the team is the oncologist, but in fact, every member of the team has a critical role and equally shares in both success and failure of the care delivery model,” he specified.

The Patient-Oncologist Disconnect

A study published in JAMA Oncology found that patient—oncologist discordance was common among the cases studied, and patients were unaware that their opinions differed from their physician’s.3 While patients may be more optimistic about their prognosis, the oncologist may not. That’s a disconnect that needs to be closed.

Schear narrated the story of a friend who lost her father to cancer and then her mother was re-diagnosed. The family could not agree on the treatment plan, especially when deciding on the mother’s transition from active treatment to hospice. Schear proposed that an expert, like a social worker or an oncology nurse navigator, could help family members come together and guide them through the decision-making process under these circumstances. “I think, again, finding ways to have these open dialogues in a diffused environment is really important.”

Kolodziej said that as he looks at this now as an outsider who’s been there, he realizes how certain aspects of care are managed very poorly or not handled at the right time. “We do it when we’re facing a crisis typically. That’s not when you get the most responsive, receptive, constructive dialogue necessarily going.” The entire treatment plan should be addressed right up front, and the opinions of the family members should also be given consideration.

Reiterating the need for handling hospice and EOL care the right way, he said, “I am cautiously optimistic that there will be such an appetite among the patient community and the provider community for a good solution; that we will, in fact, find a way to do this much better than we’re doing it right now.”

When asked about the CMS proposal to pay physicians for ACP with patients and their families,4 Kolodziej said he does not believe it will help push this agenda. Deeming it as a continuous journey, he said paying for a documented 15-minute conversation on ACP will not achieve much. “But I understand that if nothing more, it does give physicians the feeling that there is a value among the payer universe behind this activity. I understand the symbolic significance of it,” but he does not believe it will change the status quo.

The discussion then moved on to gaps in survivorship care and preparing patients for their life “after” cancer. Schear shared results of a LIVESTRONG survey from several years ago that found that a majority of patients had at least 1 posttreatment physical, emotional, or practical concern. However, 29% said they did not receive care for their physical concerns, nearly 50% voiced lack of follow-up care for their emotional concerns, and one-third did not get follow-up care for practical concerns. Less than half of the patients reported having conversations on fertility preservation and fertility risk with their provider.

Alvarnas asked Kolodziej whether adult cancer care can be modeled based on pediatric survivorship care and if it’s possible to align incentives. Kolodziej said that a lot remains unknown with chemotherapy agents. He cited examples of patients with breast cancer whom he had treated about 2 decades ago and who were concerned about cardiac effects post treatment with Adriamycin or Herceptin—drugs known to be cardiotoxic. He said he was at a loss for information because not much was known back then about survivorship care.

It’s getting better now, he said, with snippets of information being available, such as vascular problems associated with testis cancer and the association of prostate cancer with metabolic syndrome. However, wellness recommendations for survivors continue to lack structure.

Kolodziej drew attention to the fact that survivorship care involves a significant contribution from the patient’s PCP, especially considering that many are not very confident with managing cancer survivors. “Most primary care providers are not really that interested necessarily in taking their cancer survivors back because they’re petrified that they’re going to do something wrong. They’re just horrified,” Kolodziej said. He emphasized the importance of continued communication between the oncologist and the PCP—a collaborative approach throughout the care continuum, from diagnosis through survivorship. He believes oncologists should provide PCPs with recommendations and guidelines that can promote wellness and improve patient QOL.

Alvarnas agreed that while oncologists want their patients to return to primary are, they also seek confidence that the patient’s PCP is “well-positioned to ensure that issues related to cancer care are addressed equitably and in a timely fashion.” Would healthcare reform impact any of this? Will value-based models push for a more integrated and ideal care delivery for these patients?

Schear thinks that the OCM is a good start and the outcomes will become clear over time. However, she does expect to see a positive impact on navigation care planning, with the patient at the center of the process. “We are moving from “an illness-centered perspective toward a person-centered perspective,” Schear said.

Kolodziej said that he’s very satisfied that healthcare reform mandates co-payment—free cancer screening and has eliminated restrictions based on preexisting conditions. He, too, is looking forward to learning what implementation of the OCM will do, as data would be scrutinized for quality and process improvement while keeping the patient front and center. “The idea that you do things because this is the way we do things, and the patient’s kind of peripheral to all this, that’s disappearing,” he added.

“The idea of patient centeredness isn’t necessarily a means to the end. It’s not a route to the point,” said Schear. Reiterating the need to evolve our care systems to lend holistic support to patients, Schear added that it’s a long journey and she’s happy that we are well on our way.

Transformation using technology in healthcare will not be instantaneous according to Kolodziej, but it can dramatically improve every aspect of care delivery and care coordination. “I think the kind of connectedness and engagement that is coming to healthcare…we should all applaud it.”

To listen to this panel discussion, please click here: http://bit.ly/2fmhT8l


  1. Dangi-Garimella S. CMS announces practices and payers participating in the OCM. The American Journal of Managed Care® website. http://www.ajmc.com/newsroom/cms-announces-practices-and-payers-participating-in-the-ocm. Published June 29, 2016. Accessed September 26, 2016.
  2. The Planning Actively for Cancer Treatment (PACT) Act: providing cancer patients a plan for treatment and survivorship. https://www.canceradvocacy.org/cancer-policy/pact-act/. National Coalition for Cancer Survivorship website. Accessed September 26, 2016.
  3. Douglass C. Cancer patients view their prognosis much differently than physicians without ever realizing it. The American Journal of Managed Care® website. http://www.ajmc.com/newsroom/cancer-patients-view-their-prognosis-much-differently-than-physicians-without-ever-realizing-it. Published August 15, 2016. Accessed September 20, 2016.
  4. Joszt L. CMS proposes paying for end-of-life care discussions. The American Journal of Managed Care® website. http://www.ajmc.com/newsroom/cms-proposes-paying-for-end-of-life-care-discussions. Published July 8, 2016. Accessed September 26, 2016.
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