State of Cancer Care in America

06/20/18 • 23 min

Dr. Blase Polite discusses the latest State of Cancer Care in America report, and the opportunities and challenges confronting the cancer care community.

Support for JCO Oncology Practice podcasts is provided in part by AstraZeneca, dedicated to advancing options and providing hope for people living with cancer. More information at AstraZeneca-us.com.

Welcome back everyone to the ASCO Journal of Oncology Practice podcast. This is Dr. Nate Pennell, medical oncologist at the Cleveland Clinic and consulting editor for the JOP. It's that time of year again, when ASCO releases their annual report titled The State of Cancer Care in America, which has a goal of increasing awareness among policymakers and the larger cancer community about opportunities and challenges in the delivery of cancer care for the United States. The 2017 version is being released this month, and is always one of the most popular manuscripts and, to be honest, one of the most popular podcasts we do here at the JOP.

Joining me today is Dr. Blase Polite, associate professor of medicine and deputy section chief for clinical operations, as well as the executive medical director for cancer accountable care at the University of Chicago. Dr. Polite is a past chair of both the ASCO cost of cancer task force and the government relations committee, as well as being a fellow of ASCO. Today we'll be discussing the State of Oncology Practice in America, 2017, Results of the American Society of Clinical Oncology Practice Census Survey. Dr. Polite, thanks for joining me.

Nathan, good morning. It's great to be on with you again.

So why don't we start out just by talking a little bit about the background and the purpose of this annual State of Cancer Care in America report. How does ASCO get this data, and really what's the intended purpose?

So we're very excited this year. There's actually been a change to the way we do things. So in addition to the standard survey that we send out the practices, we've also been able through the work of our excellent team at ASCO to use something called the physician compare website and database from the Center for Medicare and Medicaid Services, CMS, that allows us for the first time to really get a sense of the true number of oncologists practicing across the United States, where they're located, how big their practices are, et cetera. So now we have two sets of data, one that gives us a nice sense of the geography of the total census of care of practices, and then our more detailed in-depth look of our survey practices.

And you know, this is really one of the most important things for those of us who work at the ASCO level, because this gives us a true pulse of what's going on out there, what are the market trends, and really, most importantly, what is it that is bothering practices on a day to day basis that we at ASCO then can try to figure out from a policy standpoint, can we work to make things better?

So one of the things that the State of Cancer Care in America always does is look at sort of the demographics and the makeup of the different practices. And have there been any significant changes this year? And is this something that is part of a trend, or anything that surprised you?

Well, the one thing that we continue to see, and we've gone back to 2013 and we've looked at the numbers of the-- using the physician compare, where we really get a sense of all of the oncology practices out there, is we're starting to see more and more consolidation. And specifically what I mean by that is we continue to see more oncologists every year, but a fewer number of total practices. So again, we're beginning to see more practices consolidate into larger groups. Not surprising, given the economic pressures and everything else that we see. But that that's probably a more consistent trend that we're seeing over the years.

Well, that certainly makes sense, I think, with the payer issues. And that kind of brings us to our next part here. One of the main purposes of this is for oncology practices to be able to list their top sources of pressure and concerns. So can you talk a little bit about what the concerns of the oncology practices were for 2017?

Yeah. So we were able to look at concerns within the census, both at an overall level, and then we're able to look at it specifically by how we break up the practices, which are academic, hospital, or health system owned, and physician owned. And what shop really to the top this year and wasn't really even a contest, was payer pressures. So this is the one thing that people are screaming from the rooftops, 70% of practices were physician owned, and really over half of other practices are saying that p...

Dr. Blase Polite discusses the latest State of Cancer Care in America report, and the opportunities and challenges confronting the cancer care community.

Support for JCO Oncology Practice podcasts is provided in part by AstraZeneca, dedicated to advancing options and providing hope for people living with cancer. More information at AstraZeneca-us.com.

Nathan, good morning. It's great to be on with you again.

Previous Episode

Open Oncology Notes: A Qualitative Study of Oncology Patients’ Experiences Reading Their Cancer Care Notes

Dr. Nathan Pennell and author Dr. Thomas W. LeBlanc discuss how open notes have become a routine part of the patient experience, and why physicians might want to elicit and address concerns that arise from notes.

Support for JCO Oncology Practice podcasts is provided in part by AstraZeneca, dedicated to advancing options and providing hope for people living with cancer. More information at AstraZeneca-us.com.

Hello, and welcome back to the ASCO Journal of Oncology Practice podcast. This is Dr. Nate Pennell, Medical Oncologist at the Cleveland Clinic and consultant editor for the JOP. Now many clinicians have probably noticed over the last few years that both in oncology and in medicine, there is a movement that patients should have better access to their electronic medical records, and that often includes clinicians' notes.

This is a concept known as open notes, and in the modern world we live in, where information is readily available 24 hours a day and seven days a week, it makes perfect sense for medicine to follow suit. However, little is known about the real risks or benefits to cancer patients of this open note movement. Is it a positive thing that builds patient empowerment and improves trust, or are their potential negatives such as risk of misunderstandings and privacy concerns?

Joining me today to discuss this topic on behalf of his co-authors is Dr. Tom LeBlanc, Associate Professor at the Duke Cancer Institute, to discuss his paper titled Open Oncology Notes: A Qualitative Study of Oncology Patients' Experiences Reading Their Cancer Care Notes, published online on the JOP in February, 2018. Tom, thanks so much for joining me today.

Thanks so much for having me.

So can you tell me a little bit about this whole open notes concept?

Sure. So as you probably have seen, most of the modern electronic records that many large health systems are using, and even smaller community practices, come with things like patient portals. And increasingly we're seeing that practices are starting to turn these on and to turn them on in more significant ways.

So the traditional way was that patients could have a kind of one-way exchange of information where they could just read things like their laboratory results, or maybe X-ray reports and things like that. Now we have two-way communication. They can send messages back and forth to their clinicians. And some places, like Duke, for example, and many other centers like it, have even allowed patients to read parts of their electronic records, in this case, their progress notes.

And as you mentioned, this is part of more of a movement towards patient-centered care where the idea is that by increasing transparency, we would hope that people might be more engaged in their care.

It sounds like this was a real need to do a study like that. So why don't you take me through your study? How did you do this?

So basically, we went into the Oncology Treatment Center and tried to find patients who had already used this system. And so we decided that we would focus first on patients who had advanced cancer because we felt like that was the area where maybe we were most concerned that a patient might read or see something that they didn't know that might really make them upset or create anxiety or worry. So we started with that particular population.

And as part of the screening, when we were looking for advanced cancer and folks getting active treatment in the Oncology Treatment Center, we also looked for people who had an active MyChart patient portal account. And then we went and screened amongst those folks for those who had actually already read a note.

So if you imagine, these are kind of the super users of the patient portal. There are a lot of people who have signed up for the patient portal who have never logged in, for example. We didn't talk with those folks. There are many people who use it regularly to review labs, but didn't even know that you could read notes. We didn't talk to those folks. We really only talked with people who had actually used and accessed the notes.

And then we conducted a semi-structured qualitative interview. So we basically had a guide with a series of questions to help us better understand certain things that we were really interested in. Like for example, we wanted to know overall what people's experience was like reading these notes, but we also wanted to know about what things they might change. So we kind of ended it with a request for some kind of feedback and suggestions about their experiences. And we did that for 20 patients in the cancer center.

So what did you find in these interviews?

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Next Episode

Palliative Care in the Global Setting Summary

Dr. Jim Cleary talks with Dr. Pennell about this new resource-stratified guideline, which provides guidance to clinicians and policymakers on implementing palliative care in resource-constrained settings.

Welcome back, everyone, to the ASCO Journal of Oncology Practice podcast. This is Dr. Nate Pennell, medical oncologist at the Cleveland Clinic and consultant editor for the JOP. Now over the last decade or so, there has been a major change in our approach to the care of advanced cancer patients with the recognition of the importance of palliative care. There have been a number of trials now showing that integrating palliative care into cancer patients' care can make a major impact on their quality of life and possibly even their survival. And as a result, the involvement of palliative medicine has become part of treatment guidelines. However, much like cutting edge biomarker testing or expensive drugs, specialist-driven palliative care also takes a fair amount of resources that are not available everywhere. So joining me today to talk about this is Dr. Jim Cleary, who just moved from the University of Wisconsin Carbone Cancer Center, where he started the palliative care program in 1996 and for the last seven years, has led the Pain and Policy Studies Group, a WHO collaborating center for pain policy and palliative care. He's now been recruited to the Indiana University School of Medicine in Indianapolis, where he'll be the professor of medicine and Walther's senior chair in support of oncology and director of the supportive oncology program at the IU Simon Cancer Center. He's going to focus on building a program focusing on global supportive care and palliative care, which makes him the perfect person today for us to talk to about the recommendations of an expert panel that's going to be published this month in the JOP titled, Palliative Care in the Global Setting ASCO Resource-Stratified Practice Guideline Summary. Jim, thanks so much for joining us. Why, thank you very much for having me-- a real honor. So can you start out a little bit by telling us about the progression of the role of palliative care in oncology, and what has led to the impetus for forming the panel that you were a part of? So if we look back historically to the introduction of palliative care throughout medicine, it's actually been primarily in cancer care. If we go back to the original WHO guidelines in the 80s, it was all focused on cancer patients. And it's interesting if one looks at the very definition of palliative care from the word go, they said all the principles of palliative care can be applied upstream, earlier in the course of patients' illnesses from the-- even from the 80s. But as we look at it historically, and particularly in the US, with the introduction of the Hospice Benefit, palliative care really became brink of death care. So that you didn't get hospice or pallative care involved until someone was actively dying. So we were missing out on that very principle of-- let's address all the issues, the skills that palliative care provides early on. Let's address these earlier on in the course of people's illness, particularly when it comes to people with advanced disease. And it doesn't just have to be advanced disease to be including the skill set. So people who are getting chemotherapy, some may support it or call it supportive oncology, but really, it's the same principle-- supportive oncology, palliative care. It's total person care of patients with cancer and dealing with cancer. So as we look at those, the studies have been coming out saying it improves quality of life. You mentioned the survival benefit that's been suggested or hypothesized. And while that may be there, for me, that's not the primary reason for doing this. It's the right thing to be doing-- to be addressing quality of life. And even trying to get us to move beyond what seems to be that magic mark of survival-- length of survival or time of survival may not be the only important thing. Quality of life is becoming increasingly important as we address many of these issues. ASCO has recognized this, and in 2016, they actually published a paper-- again, a guideline-- the integration of palliative care into standard oncology care. And that was released in 2016, and it was based on what we would call research that was done in maximal resource institutions, largely in the high income countries. The United States, Canada, Western Europe, Australia-- those sorts of countries. What the situation is in the world is that probably 80% of the cancers are now being diagnosed in low and middle income countries. And in those countries, most people are actually being diagnosed with advanced disease. And this comes from the paucity of person power in terms of diagnosis, the lack of surgeons, the remoteness that these people-- where they live. They're really presenting in different ways....