Meeting Coverage From the NCCN Annual Meeting – Optimal Care For Patients: Who Decides?

What is threatening cancer care the most these days? The most reflexive answer is the high cost of the drugs. The answer comes up immediately because if patients can’t afford the price tag on the new drugs, then advanced clinical outcomes won’t be achievable. Another answer may be that it is policy, federal or commercial, that is threatening cancer care. But let us not forget about the primary point of contact, the medical oncologist. Maybe the loss of autonomy by the oncologist is the single greatest factor threatening the delivery of quality cancer care today.

In a morning roundtable at the annual NCCN meeting in Hollywood, FL the topic of which cancer stakeholder has the largest role in decision-making was discussed. The title of the roundtable was “Optimal Care for Patients: Who Decides?” and featured: Karen Alban, RN, BSN, OCN, Oncology Nursing Society; Al B. Benson III, MD, Robert H. Lurie Comprehensive Cancer Center of Northwestern University; Nancy Davenport-Ennis, National Patient Advocate Foundation; Scott Gottlieb, MD, American Enterprise Institute; Shari M. Ling, MD, Centers for Medicare & Medicaid Services (CMS); Ray Lynch, CPA, MBA, Huntsman Cancer Hospital; Lee N. Newcomer, MD, MHA, UnitedHealthcare; and David G. Pfister, MD, Memorial Sloan-Kettering Cancer Center. The roundtable was moderated by Clifford Goodman, PhD, of The Lewin Group, as he does every year.

Dr. Goodman set the stage by asking – who is really in charge here? And how might that be changing? With that question as a launching point, Dr. Goodman probed the members of the roundtable to gather the different perspectives and help elucidate how the dynamics between physician and cancer patients are changing.

Karen Alban referred to the treatment team as an “inner circle” because cancer care is not a “one and done” proposition. She points out that cancer care decisions occur over the course of the illness, and the patient often invites multiple inputs over the course of the disease. As might be expected, Ms. Alban provided expertise on what nurses can offer to the patient including acting as a buffer, between the patient and the doctor or other members of the inner circle by educating the patient and the patient’s family, and filling some of the gaps between the patient and their primary care physician and their oncologist.

Dr. Benson added that the first encounter between physician and patient can often be the most important encounter because it establishes tone and future interactions. If the physician can sense that the decision making process is likely to include financial or psychological help the physician can involve those factors immediately and set the tone for what happens over time.

When asked by Dr. Goodman, Nancy Davenport-Ennis told the audience that in 2011 3.5 million consumers called the National Patient Advocate Foundation (NPAF) for information, clearly making them part of the “inner circle”. Ms. Davenport-Ennis says that the tendency to include others in the decision making process is shifting now because years ago decisions were made primarily between the doctor and the patient, but today NPAF hears from patients about the payer, and specifically the type of benefits the consumer has.

Dr. Scott Gottlieb, a fellow at the American Enterprise Institute, an attending physician, and having held roles at CMS and FDA, brings a different perspective to the “who’s in charge here?” discussion. In Dr. Gottlieb’s opinion it depends on the type of coverage – private versus federal insurance. As more practices consolidate into hospitals and we see more capitation agreements as a result, we will see more narrow network types of plans rolled out by insurers. He believes the ACA will likely drive the move toward narrow network plans too.

Similarly, a move toward centralization of decision-making will be seen in the government sector but in this case driven by budgetary constraints and political realities. As Dr. Gottlieb says, “it is a gradual evolution, but there is no doubt the locus is changing.“ CMS wants to get more authority to make more granular decisions about what should and shouldn’t be covered in different contexts, and in the new political environment it will be easier for CMS to get these authorities.

Dr. David Pfister, from MSKCC, says the whole process of cancer care has become much more transparent. Big cancer centers like MSKCC have multi-disciplinary teams impacting on care decisions, and resources like the NCCN guidelines, including the patient guidelines, are important sources of information that impact on decision-making. There is also an increasing list of patient education materials that are having an impact on patient decision-making.

Ms. Davenport-Ennis was asked whether she felt as though there is patient satisfaction that preferences are being heard. She pointed out that it depends on the insurance plan. For example, if a patient is in a high deductible plan with a health savings account and is in a position to fully satisfy the annual amount required in the high deductible plan, he has more autonomy in the decision making process. If patients are in a position to self-pay there is great autonomy and great satisfaction. too But as there is a diverse spectrum of insurance plans, there is less autonomy causing more and more frustration for patients.

Bringing in the payer perspective, Dr. Goodman probed Dr. Newcomer of UnitedHealthcare and Dr. Ling of CMS about who is most responsible for cancer patient care decisions. Dr. Newcomer doesn’t think it is surprising that patients take finances into consideration when making treatment decisions. He points out that there are about as many different insurance coverage plans as there are patients, so it depends on the individual and the plan. “In the fee for service world just about everything gets paid for in one way or the other,” he said.

Dr. Ling says that optimal care is “care that is safe, well coordinated, centered on patients and their families, includes safe transitions from clinic to hospital to outpatient infusion centers, and meets the patient’s goals. Dr. Ling says that Medicare can’t possibly know the individual’s preferences, which is why coverage becomes dependent on evidence of improved outcomes. To determine coverage based on outcomes, CMS has to have a very good data source.

Dr. Benson pointed out that decision-making is increasingly complex as care moves into an era of patient selection based on molecular profiling. He added that we’re a country based on the individual and in the healthcare arena we’re witnessing tension between what the individual wants and what might be best for society as a whole.

The discussion then led toward guidelines, pathways, compliance, and variation in care. Ms. Davenport-Ennis says that she hears more and more patients discussing the pathways and guidelines they are complying with. She says that is a dramatic shift.

Dr. Newcomer related UHC’s experience with community oncology practices and episode-based payments and compliance with guidelines. A few things have been surmised between provider and payer and perhaps most importantly, the fact that there is common interest between parties to identify gaps to improve quality of care by reducing waste. It was also found that everyone wants to incorporate more of the positive advances, like genetic tests that have clinical utility.

Dr. Newcomer shared that compliance to UHC’s physician-chosen guidelines was only about 60%, and that more attention to standardization according to guidelines would reduce variability and waste. Furthermore, guidelines are written to reflect what is known as best care today and it is hard to conceive why there would be a deviation from the best known care.

Dr. Benson followed that point by adding that at the Lurie Comprehensive Cancer Center a guidelines enforcement policy is not in place, but they are incorporating guidelines into training programs and multi-disciplinary tumor conferences. While variation in cancer care is expected at the Cancer Center, use of evidence-based guidelines is presented to assist in treatment decision making.

At this point the discussion progressed to the subject of the Independent Payment Advisory Board (IPAB). Dr. Goodman asked Dr. Gottlieb about the board and Dr. Gottlieb told the audience that IPAB has 15 members who will serve 6 year appointments and they have the mandate to cap the growth rate in Medicare spending.

Dr. Gottlieb elaborated that if Medicare spending is growing at a rate above the Consumer Price Index (CPI), IPAB has to come up with a set of proposals to bring spending back in line with the CPI.

As a result of the IPAB recommendations, Congress has 30 days to come up with alternative proposals to bring spending down or any proposals the IPAB makes will go into effect (and we all know Congress can’t act in 30 days). Dr. Gottlieb described IPAB as a clever way to side-step Congress.

Dr. Gottlieb expects IPAB to identify areas of large expenditure and look for easy ways to cut spending such as move from ASP +6% to ASP +4%, or if price controls (such as VA pricing) are working in one market they’ll move them into another market.

Ms. Davenport-Ennis agreed with Dr. Gottlieb, and added that the end result of IPAB reducing spending is less access to therapies for patients.

As the roundtable concluded, it became increasingly clear that today’s healthcare system is in the midst of an evolutionary shift in terms of delivery of cancer care. External influences are impacting decision-making, and increased information sources combined with impending reductions in spending are making the business of evidence-based medicine increasingly complex.

The outcome of this trend toward including more perspectives in the “inner circle” is that medical oncologists have to spend more of their time coordinating care and managing external dynamics, and thus individualizing care is increasingly difficult and time consuming. When the medical oncologist doesn’t have the autonomy to make therapeutic choices independently, and their job satisfaction goes down accordingly, that may be the real threat to the delivery of quality care.

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