Dr Goodman launched the discussion with a question for Dr Neuss, asking if he thinks we are creating, or at least moving toward, the creation of better value in cancer care delivery. Dr Neuss responded that the field is moving in the right direction: “We are making progress,” but more progress is needed in the area of measurement and data.
Journal of Clinical Pathways (JCP) followed-up with Dr Neuss after the conference to gain a deeper understanding of his views on how to generate more value in cancer care—where the gaps are and what needs to change.
JCP: During the roundtable discussion at NCCN, the moderator asked the panel whether the health care system is generating more value in oncology, and you said, “We’re making progress” and that the key would be better reporting to help identify best practices and good data. Could you expand on what you meant?
Dr Neuss: As you know, value has been defined as outcome divided by cost. As many new treatments have meaningfully improved the outcome for some patients—consider checkpoint inhibitors and CAR T-cells—at the right price point, they have unquestionably improved the value of cancer care too. However, as there’s no dataset that integrates billing and clinical data, we can’t evaluate the value created in this subset of patients. If there were, we could talk more openly about fair pricing for these treatments. And even if you increase the cost, if you have enough good outcomes, you’ve increased the value.
I think it’s really paradoxically difficult, or interesting, to note that we don’t even know what a year of normal life is worth monetarily except in the context of medicolegal issues, lawsuits, or malpractice suits, where people assign some value to the life of a person. The Institute for Comparative Effectiveness Research (ICER) has made an attempt to value a year of symptom-free life, but it’s just hard. For example, if CAR T-cells put a patient in a complete remission and they go off treatment for 10 years, what’s the value of that? We don’t have a commonly agreed-upon answer to that question, and I think that’s problematic.
There needs to be a consensus on what different things are worth and what the outcome is. For instance, if a drug has a 1 in a million chance of benefitting 1 patient out of 1 million, do all 1 million patients get to take it, and do we pay for it, and do we calculate the cost of that on the 999,999 patients who took it and didn’t get any benefit, or do we just calculate the value on the 1 patient who achieved some benefit? There isn’t common agreement on that. In addition, there is no common agreement on pricing models. Some people say you should only pay for CAR T-cells if they worked. Is that really a sustainable approach? I don’t know the answers, but I think these are important questions.
I would end by emphasizing what I said previously, which is these new treatments are really almost miraculous, and they have to be adding value to the patients who are benefitting from it, and I think the net effect on the system probably is that they’re worth something. We just have to figure out what they’re worth.
JCP: You also mentioned better reporting of what providers do record. Can you expand on that?
Dr Neuss: So as part of the Oncology Care Model (OCM) (which is wonderful), there are multiple layers of reporting of clinical variables for patients and quality metrics for our practice—why does that have to be an extra step? Why can’t that be integrated into our care in real time? The things that are measured are all things we’re interested in. If the electronic medical record (EMR) vendors were responsive and responsible, they would build systems that promoted greater value, not systems that required all these add-on software applications to make these measurements. And, maybe more importantly although clearly also expensively, it requires much more effort and time to extract the data to put it somewhere like Microsoft Excel where you can analyze the data and report the data. Why isn’t it integrated into what we do in our care? It seems sort of odd that the EMR systems don’t recognize this and integrate it.
JCP: You have also previously alluded to Flatiron making some good progress in this regard in not only recording the data and analyzing it but integrating it into processes. Did you want to speak a little bit more to that?
Dr Neuss: I should clarify that I have not had first-hand experience with Flatiron. I have just spoken with the people who are working at Flatiron and have taken what they said on face value. It seems that what their idea from the beginning was: (1) let’s collect data in a structured form using what used to be called OncoEMR, and migrate that to a better system where we can put the fields in that we need in real time; (2) let’s use different artificial intelligence machine reading capabilities to try to extract additional data from the EMR; and (3) let’s hire people to analyze the record and maybe develop the machine learning, the machine extracting process, at the same time, so that we can more rapidly advance our electronic data extraction. That’s a brilliant approach to it, and they are just doing it instead of arguing for days, weeks, months, and years about what needs to be measured. I think the leadership of Flatiron has taken that approach of “let’s just do it.”
That said, I think there is some worry now that Flatiron is being moved into the pharmaceutical ownership realm and that some of the data is not good to let out of the hands of doctors and give to pharma; and I think that concern has been addressed by Flatiron but needs to be remembered and updated and continuously addressed. But I have heard it’s a great system.
JCP: Switching gears here, what are the emerging care delivery or payment reform models that you believe have the best shot at creating more value in cancer care?
Dr Neuss: Delivery and payment are 2 very different things. In terms of delivery, improving the prediction of a drug’s effectiveness by using genetic and epigenetic information is really going to be very helpful. We have to develop this remembering that there are edge cases that won’t fit the analysis; we always need to develop these models with exception pathways available to people so that the patients who don’t fit into the paradigm are still well taken care of.
But, that said, if you look at the way we manage lung cancer with epidermal growth factor receptor mutations now, we don’t treat people very often with targeted therapy for those mutations in the absence of demonstrating those mutations, and we follow the patients and look for secondary mutations to further direct our treatment. I think moving that paradigm to other circumstances—now including ROS and ALK mutations, and when we have drugs targeting KRAS and other mutations, those targets—will be very helpful and will increase the odds that a treatment will deliver a desired effect; if you get the desired effect, it has more value.
In terms of alternative payment models, I think bundled payment is a great way to align incentives to cut the overall cost of care, and I think the OCM serves as a great example of that moving forward. There are other plans to pay for chemotherapy, as a month of chemotherapy for a certain disease or as an episode is defined somewhat differently for different diseases that will align incentives to cut the cost. In the OCM, you get all the gains; not 100% of the gains but gains minus what a practice received in Medicare-enhanced oncology services minus payments and minus the administrative charge that the OCM levels, which depends on whether you take 1- or 2-sided risk—the administrative charge being less for 2-sided risk than 1-sided risk. I think that other payers are moving toward OCM-like programs.
The Oncology Medical Home, which may have led to this whole sea of change in the way people think about it, is almost becoming a standard way of looking at all patients. More and more patients are given this team of a navigator, a person to reach, and 7-day-a-week care to decrease the cost of hospital utilization in those patients.
I think the one thing wrong with all these systems is they believe that end-of-life care has a huge opportunity for savings, and I’m not saying it’s wrong. I just don’t know if that’s true because I think it’s expensive to die, and I think it’s always going to be expensive to die, and if we respect patient autonomy there are always going to be patients who want to be in the intensive care unit until they die. There’s a wonderful paper1 from the 1980s called, “Response to the living will furor: directives for maximum care” written by a lawyer who basically says, “I don’t want to hear any of this stuff about DNR. I don’t care how low the odds are. If the odds are not zero, I want aggressive care.” And I think many of these programs believe that because a lot of cancer patients die and because it’s expensive to die, we can make a big impact on that, and I’m just not sure that’s true.
JCP: What are some of the recent value-based projects you have been working on recently?
Dr Neuss: Well, I think the important thing that I’ve been trying to work on with different contingencies, including the Commission on Cancer, NCCN, and the American Society of Clinical Oncology (ASCO), is promoting harmonization of quality measures across different initiatives, so that the specifications for the data elements of each measure align, and you can extract the information easily by collecting the right data element prospectively. For example, if you look at the NCCN/ASCO quality measures in breast cancer, they’re slightly different in the ASCO Quality Oncology Practice Initiative from the NCCN/ASCO measure. The exclusions are slightly different, and it’s going to be extremely important for people to make some compromise and have one data point.
We live in a time when it appears difficult for people to make compromises because you’re rewarded for taking positions and holding to them without really adjusting to what the reality of the situation and the reality of other people’s opinion is. I think an example of that is the recording of a person’s gender which could be defined to either be the person’s gender identity, the person’s biologic chromosome gender assignment, or something else. But I think we need to crisply define what things are and record them once and worry about updating them and making sure they’re right instead of recording them multiple times in multiple different ways with multiple different definitions because we want to do it right, we want to do it once, and we want to have a way if we got it wrong to make it right.
JCP: And practically speaking, how do you harmonize that? How do you get people in a room and agree? Who are the people who are going to decide?
Dr Neuss: Well, I think there are nationally 3 organizations wanting to be the arbiters of those measures and data elements: the Commission on Cancer, who have the biggest registry of cancer cases in the country, the Institute of Medicine that always wants to work and lead these areas, and the National Quality Forum that has done a wonderful job of defining things tightly and crisply and building consensus and recognition of those measures. I think those organizations and perhaps some others need to get together and just say, “We’re going to come up with standard measure sets.”
It requires 2 things for that to go well. It requires people showing up and taking a real interest in it and it requires a willingness to compromise, because we’re never going to get these things so perfect that edge cases don’t occur that will illustrate that perfection is impossible. That doesn’t mean we don’t have to really work on creating a more efficient system to record these quality measures.
Reference
1. Kapp MB. Response to the living will furor: directives for maximum care. Am J Med. 1982;72(6):855-859.
