Rank #1: State of Cancer Care in America
Dr. Robin Zon of Michiana Hematology and Oncology discusses the latest State of Cancer Care in America report, and the opportunities and challenges confronting the cancer care community.
Rank #2: The Paradox of Prescribing Late Chemotherapy: Oncologists Explain
Dr. Pennell talks to co-author Dr. Maria Silveira about why it can be so difficult for oncologists to refuse chemotherapy treatment to patients near death.
Rank #3: The Dinosaur Is Extinct: The Demise of Solo Medical Oncology Practice in the United States
Rank #4: Improving Timeliness of Oncology Assessment and Cancer Treatment through Implementation of a Multidisciplinary Lung Cancer Clinic
Hello, and welcome 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. On this month's podcast, we're going to be talking about a new study from the JOP Quality and Action series, titled Improving Timeliness of Oncology Assessment and Cancer Treatment Through Implementation of a Multidisciplinary Lung Cancer Clinic, published online in the JOP, January, 2019. Joining me today on this podcast is the author, Dr. Genevieve Digby, assistant professor in the division of respirology at Queen's University School of Medicine, where she's also the clinical lead for the lung diagnostic assessment program. She has an active interest in quality improvement projects, which is what led to this paper that we're going to be discussing today. Dr. Digby, thank you for joining me. Thank you so much for the invitation. Obviously, everyone likes to be seen as quickly as possible when they're trying to get into the doctor, but can you give us just a little bit of background into what led you to do this particular quality project? Why is the timeliness of care more important for cancer patients or, specifically, lung cancer patients? So great questions, Nate. Timely care is very important for patients, as you pointed out. In fact, the Institute of Medicine has timeliness as one of the six dimensions of quality. And for lung cancer patients this is particularly important, as we know that there's evidence to show that patients who have delays in their diagnosis or delays in treatment, that this is associated with progression of disease, and there's evidence to show that more advanced disease is associated with worse outcomes. And as we know from the lung cancer screening trials, earlier detection of disease is associated with better outcomes. Not only is timeliness of care important for patients from the point of view of getting their treatment underway, but it also is important in terms of the anxiety and distress that patients have. So we know that the longer delays are associated with more distress, and lung cancer patients to begin with are some of the patients who have the highest levels of anxiety and distress amongst oncology patients. So for us, the study arose because of an identification locally that there were delays in our care processes in regards to transitioning patients from the diagnostic phase of the lung cancer pathway to the treatment phase and a desire to improve those care processes. I think that that really resonates with me. I know at my institution we've been paying attention to the time to initiate treatment for a while, and it's not like going to see the dermatologist. When you're diagnosed with cancer, you really have a lot of anxiety, and you want to get in to get treatment as quickly as possible. And of course, as you've mentioned, especially for early stage lung cancer, there's pretty good data suggesting that the longer someone waits to make a diagnosis, the more likely they are to have their potentially earlier stage cancer turn into a later stage cancer with worse outcomes. So I applaud you for addressing this. And in your particular project, you focused on the establishment of a multidisciplinary clinic. And this is something where I think a lot of the literature out there on looking at processes and time to treatment has focused on that. So is there data suggesting that multidisciplinary clinics specifically are a good intervention for improving timeliness of care? So that's a good question. And the literature varies in terms of its robustness based on the type of cancer that we look at. So my group published a systematic review looking at multidisciplinary clinic models in lung cancer specifically. And we were surprised, actually, by the relative paucity of data in terms of what the optimal catalytic characteristics are, even just in terms of the number of studies that's actually evaluated a multidisciplinary clinic, per se. In other cancer types, there is evidence that multidisciplinary clinics lead to better collaboration between specialists. There is some evidence, even in lung cancer, that perhaps there's better compliance with staging guidelines and guideline-based care when care is delivered in a multidisciplinary clinic. And there's also some evidence, though limited again, especially for lung cancer, surrounding the patient experience and patient satisfaction with their care when it's delivered in a multidisciplinary clinic model. Yeah. Honestly, I don't think I've ever heard anyone argue that there's a downside to a multidisciplinary clinic. But I do appreciate studying measurable metrics that may demonstrate benefits because, of course, you have to get support for these sorts of things. So why don't you take me through your project's design, and what were the goals that you tried to achieve? So this is a quality improvement study. We started by identifying what our overall goals and outcome measures were and how we would go about achieving those goals. For us, the focus was to improve our transitions from the point of care of receiving a diagnosis of lung cancer through to starting treatment with an oncologist. So this particular setup was due to the fact that in our center we have a separate thoracic surgery program where patients with suspected early stage disease directly go to a thoracic surgery program and those with more advanced disease or suspected non-operable disease are initially managed by a respirologist, and then are seen through with the appropriate thoracic oncology specialist subsequently. So for us, we looked at our data, and we actually identified that that time from transition, where a patient receives a diagnosis of lung cancer, to when they're first assessed by an oncologist was upwards of about two weeks. The time then to go on and start their first treatment for cancer was in the range of 40 to 45 days. And we identified that there was room to improve and set a target of reducing both of these individual time frames by about 10 days. We hypothesized that if it could improve timeliness to seeing an oncologist from about 14 days to closer to 4 days-- 3 to 4 days-- that we would similarly lead to maybe about a 10-day improvement in time to treatment on the other end. So our improvement plan was to launch this multidisciplinary clinic. And we used a quality improvement called plan, do, study, act cycles, or PDSA cycles, to help facilitate that and fine-tune our multidisciplinary clinic along the way to make it even more efficient. That sounds great. It sounds like a very worthy project. So what did you find? We found that by implementing a multidisciplinary clinic, even within a very short time of implementing it, that we were able to significantly reduce the time from a patient's lung cancer diagnosis to when they were first assessed by an oncologist. In fact, just with the implementation of the clinic, we led to about a 10-day improvement. We fine-tuned our processes to help create sustainability of the teams. Initially, there was still some variability. And we were able to maintain about a 10-day improvement overall over time. What we found though, and what was really interesting, was that as we went about our change processes, we had ongoing improvement in time to treatment, so that time from lung cancer diagnosis to time to first treatment. With our initial clinic implementation, we had about a 10-day improvement in time to treatment as well. But as we noticed, as we fine-tuned our processes, that improvement actually increased such that we overall reduced time to treatment from about 40 days at baseline to 15 to 20 days by the end of our quality improvement initiative. And that is incredible. I think, to me, was the most impressive thing is not so much that you, by moving up your evaluation by 10 days, you improved time to treat by 10 days, which makes perfect sense, but that somehow implementing this entire project, you greatly exceeded your expected improvement in time to treat. And so, did you look at what specific interventions might have led to that even better improvement than you expected? So that's a great question. And as you said, what surprised us was the extent to which timeliness, in terms of receiving first treatment improved, even beyond just time to seeing an oncologist. And when we considered the data, some of the things that came out were likely the increase in collaboration that we were seeing amongst specialists, particularly medical and radiation oncologists in terms of being able to decide on a treatment plan a bit sooner and get that plan up and running. In fact, when we looked at the data, the patients that had the greatest improvement in time to treatment were those with stage 2 and 3 lung cancer, and also including patients with stage 4 lung cancer. And those are often-- especially stage 2 and 3-- where patients are most likely to need a concurrent chemoradiation, where the treatment plans are often decided together amongst the radiation oncologist and the medical oncologist. And so having that ability to discuss the treatment plans and come up with a clear plan sooner is what we hypothesized is leading to be faster kind of treatment. To evaluate this further, we actually also have recently completed a qualitative study, where we interviewed physicians, and including patients and caregivers, about the impact of a multidisciplinary clinic. And while I don't want to give away all the results yet before it's published, one of the themes that comes up certainly for the physicians and particularly oncologists is just the overall ability to collaborate and have real-time discussions with each other and with the patients about what their treatment plans would be, leading to a faster implementation of that plan. Well there you go, listeners. You're getting a sneak peek of a future study going to be coming out of this group. But I think that makes perfect sense. So again, as a group that has, at least internally, been focusing on improving our time to getting patients to treatment, I think just having an emphasis on studying how long it takes to treat and that everyone understanding that it's a priority to try to make that as short as possible seems to just lead to improvements because everyone's aware that it's an important aspect of treatment. And things tend to show improvements without any real specific interventions taking place. And then, of course, the multidisciplinary clinic. It makes perfect sense that multidisciplinary care would be better coordinated. So I think that that's a really nice validation of what you were trying to do. So how would other centers that maybe are starting to look at this, how would they take what you've done and apply it to their own programs? So that's a great question. I think there's a few things to consider. Firstly, quality improvement processes can be instituted in any organization. And part of quality improvement is identifying what the main barriers are to achieving the timeliness of care goals that an individual center has and just implementing the PDSA cycles at their own institution to help achieve those targets because the barriers can be different between different organizations. So where possible, I think eliminating the silos that exist in our care models of the traditional model of seeing one person at a time and really trying to get people to work together, that can be challenging administratively. But once those barriers are overcome, it's actually more convenient for people to really work collaboratively to improve patient care as a whole. That's great. And this really fits in nicely with both the US National Cancer Institute and ASCO, in particular, have really paid a lot of attention in recent years to teamwork and building team science to help improve outcomes. And I think that your study is a wonderful example of how that can lead to direct and measurable improvements in care. Well, thank you. We certainly think that we've led to some improvement locally and hope that other centers can learn from what we've learned to help drive change. Dr. Digby, thank you so much for talking with me today about your study. And I really want to thank you for sharing the results of your project because I think high quality quality improvement projects that are going on all over the world, really, but oftentimes don't get shared outside of the individual team or institution where they're doing them. And this is going to allow, hopefully, a lot of people to see how investments in teamwork and trying to improve on these metrics can lead to really important results for our patients. I completely agree. It's important to share the knowledge that's learned, particularly with quality improvement. We're all working towards common goals for delivering better patient care, and it's great to be able to share those learned experiences with others. And I also want to thank our listeners out there who joined us for this podcast. The full text of the paper was published online at ascopubs.org/journal/jop on January 7, 2019. This is Dr. Nate Pennell for the Journal of Oncology Practice signing off.
Rank #5: State of Cancer Care in America
Dr. Blase Polite discusses the latest State of Cancer Care in America report, and the opportunities and challenges confronting the cancer care community.
Read the related article "The State of Oncology Practice in America, 2018: Results of the ASCO Practice Census Survey" on JOP
Rank #6: Oncologists’ Attitudes and Practice of Addressing Diet, Physical Activity, and Weight Management With Patients With Cancer: Findings of an ASCO Survey of the Oncology Workforce
Dr. Nathan Pennell and Dr. Jennifer Ligibel discuss weight management and physical activity programs for patients with cancer.
Hello, and welcome 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. I'm sure everyone who listens to this podcast is aware that obesity and lack of physical activity are major health problems in the USA, and they contribute to multiple medical conditions such as heart disease, diabetes. But how much do patients and oncologists know about how obesity and lack of physical activity impact cancer incidence or treatment or outcomes? And how do physicians manage these issues in their practice? With me today to discuss this issue is Dr. Jennifer Ligibel, associate professor at Harvard Medical School and medical oncologist at the Dana-Farber Cancer Institute, where she also serves as director of the Leonard P. Zakim Center for Integrative Therapies and Healthy Living. We'll be discussing her paper, "Oncologists' Attitudes and Practice of Addressing Diet, Physical Activity and Weight Management with Cancer Patients, Findings of an American Society of Clinical Oncology Survey of the Oncology Workforce." Welcome, Dr. Ligibel, and thanks for joining me today. Thank you so much for having me. So just to set the stage for our listeners, how big of a problem is obesity and physical inactivity among cancer patients? Is this something that is generally mirroring the larger problem we see in America, or is there anything different about our cancer patients? Well, we know that obesity and inactivity are risk factors for developing a number of different malignancies. The International Agency for Research in Cancer and the World Cancer Research Fund have both analyzed observational data linking obesity, inactivity, poor dietary quality to the risk of developing malignancy, and have demonstrated really consistent evidence that there is at least 13 different malignancies where obesity, in particular, increases the risk of developing the malignancy. So if you think about the fact that obesity and inactivity are pretty prevalent in the United States, in general, and that these factors also increase the risk of developing malignancy, we find that an even higher proportion of cancer survivors are obese and inactive as compared to the general US population. We also know that treatment that patients get for some malignancies can contribute to weight gain, and also can contribute to inactivity. So you put all of these factors together, and a very large proportion of cancer survivors are at risk for obesity, inactivity, poor dietary quality, or all of those factors together. I mean, the number that you and your co-authors mention is that almost 1/3 of cancer survivors are obese. That seems like a huge number. So clearly a major problem. Yes, that's true. And that number has increased significantly over the last decade. So I know that obesity contributes to cancer risk. But is there data that even treatment of cancer can be impacted by these issues? Yes. So we know that obesity has an impact on treatment-related outcomes and, likely, on the risk of recurrence and mortality in many different diseases. Breast cancer has been the best studied, where we know that women who are obese when they're diagnosed with breast cancer actually have a 35% higher risk of dying from breast cancer compared to women who are of normal weight when they were diagnosed with breast cancer. Similar data are emerging in other malignancies. Colorectal cancer, there has been a strong link with obesity and cancer outcomes. Prostate cancer, gynecologic cancers, there's emerging data as well. So we know that these factors can impact the risk of recurrence and mortality. But there's also evidence that suggests that people who have excess adiposity, have metabolic complications of obesity, are at higher risk of complications like poor wound healing after surgery. They're at higher risk of lymphedema and some malignancies. They may be at higher risk of things like peripheral neuropathy related to chemotherapy. So there are a lot of poor outcomes associated with body weight in cancer patients. Now, I know even dosing of chemotherapy, I believe, obese patients are at risk for under-dosing because people are afraid to give them proper weight-based dosing. So lots of reasons to pay attention to this issue. Is there data, though, that changing that-- intervening with helping patients lose weight or patients at risk losing weight, or increasing their physical activity-- mitigates these risks? That is a great question, and one that will hopefully be answered within the next few years through a number of large-scale, ongoing phase III trials that are looking at the impact of weight loss, increased physical activity, better dietary quality on cancer recurrence and mortality. We don't have data from randomized trials, at this point, looking at the impact of lifestyle change after diagnosis on outcomes. But we do have a lot of observational data that suggest that individuals who are physically active are at lower risk of recurrence in malignancies like breast cancer, colon, and prostate cancer. And we do also have a lot of information from randomized trials that are smaller in scale that demonstrate that losing weight, exercising more has an impact on shorter-term outcomes, like quality of life, cancer-related and treatment-related side effects like fatigue, neuropathy, joint pain. So we know there are benefits of lifestyle change after cancer diagnosis, but we're still awaiting these large-scale trials that will show us whether changing these behaviors actually reduces the risk of recurrence and mortality. So already enough evidence that it's important that we address it, but hopefully, we'll have more convincing evidence soon. Can you take us through the ASCO survey? What was the background to doing the survey, and what did it try to assess? So in 2014, ASCO launched an obesity initiative that really sought to educate the oncology workforce about the connections between obesity and related factors in both cancer risk and outcomes, and to provide tools and resources to help oncologists talk to their patients about physical activity, weight management during and after cancer treatment. There was also a part of the initiative that focused on research and advocacy. We were interested, given that 2014 was a number of years ago, to look at what were the current attitudes of oncology providers toward these topics? What was their practice? Were they talking about weight? Were they talking about physical activity and diet with their patients? And what did they perceive as barriers to really implementing behavior change after cancer diagnosis? And so we designed a survey that would be delivered to individuals that were currently seeing oncology patients. And they could be physicians, they could be nurse practitioners, they could be dietitians or anyone that was currently working with oncology patients and was an ASCO member. And then we asked them questions about their practice, about the attention that they paid to these topics, about what they felt got in the way. And then thinking more broadly about how important did oncology providers think that these topics were in the scope of their practice. Why don't we just jump right into the results? So what were the results from the survey? So first of all, we found that the people that filled out our survey were pretty typical for the general ASCO membership. So about 2/3 of the people that filled out the survey were based in the US. The other 1/3 were international. We did have a higher proportion of medical oncologists, partly because this was limited to people that were actively seeing patients. We had a nice balance of private practice and academic centers, and we had individuals that were treating all different kinds of cancer. So we were happy with the population that filled the survey out as being fairly representative of oncology providers in the US and more broadly. We found, when we asked the providers what were their perspectives on issues related to obesity and cancer, that there was a very strong agreement that obesity impacts treatment outcomes in cancer patients. And in fact, more than 90% of the survey respondents strongly agreed or agreed with that statement, which we were very excited to see. There was also high agreement with addressing a patient's weight should be a standard part of cancer care. And most of their respondents felt that it was the responsibility of the treating physician to recommend healthy diet, regular activity, weight management for patients in whom that was relevant. But there was much less agreement that the oncology workforce felt that they were prepared to be either delivering those interventions or that they had enough information or enough training to really feel comfortable in their skills to help patients start to make these changes. So I thought that was very important that there was high agreement that these things were important, but also a feeling of there needed to be other parts of the health care team that could help patients once these issues were identified in really helping them to make the changes that needed to after diagnosis. We then asked providers about what they were doing now, and we found that the vast majority of providers that completed the survey indicated that they were asking patients about their physical activity patterns, about their diets. They were assessing patients' weights. And this was both during and after cancer treatment. There was a much lower proportion of survey respondents that were actually making referrals to dietitians, to weight management services for their patients. So although there was a lot of discussion and there was an assessment, there wasn't necessarily the next step, which was helping patients actually incorporate these changes through a referral to a skilled provider. And then, the last piece was looking at barriers. And I think that this was something that we were actually a little bit surprised about some of the responses. The last part of the survey focused on looking at the respondents' perceptions of barriers. What did oncology providers feel like was getting in the way of patients changing their diets, exercising more, losing weight when it was relevant? We found that, not surprisingly, lack of time for counseling was something that many providers noted, lack of available resources. So even if you identified that a patient wanted to lose weight or meet with a dietitian, there wasn't necessarily someone that was available. Lack of training or expertise on the part of the oncology provider was also noted. We also found that the majority of participants felt that patients' resistance to behavioral interventions was also a large barrier to helping people make these changes. And this really led us to think start thinking about, well, what is the patient's perception? And I think that's something that we did not cover in this survey, but that is really critical. Because if we find that oncologists are talking about these topics and are trying to reinforce the importance, but patients aren't hearing that or aren't making these changes, then we're really not accomplishing what we want to. So I think from this survey, we now can see what oncologists feel is important and what they're doing in their practices. And we need to figure out, what are the patients hearing and what is the result of the advice that the providers are giving to patients? Yeah, that really is an interesting and kind of a surprising piece. So the first part resonates with me. So I certainly address, you know, in my patients that are in follow-up and survivorship, exercise and trying to maintain a healthy weight. And I also feel that I'm not super comfortable with trying to intervene in that myself, but rather try to suggest that they look for SilverSneakers or some sort of local exercise gym or other opportunities or, perhaps, refer them to a dietitian. But I don't know that I have a perception that the patients wouldn't welcome that advice or that they might be resistant. Is there any plan to try to get an assessment of cancer patients' attitudes on this? So this is something that we are planning at this time. We are trying to develop a survey and partner with some patient advocacy groups to really better understand what the patients' perceptions of these topics are. There is not much currently in the literature, but there have been some assessments. There was a large study that was done in the UK that looked at patients with colorectal cancer and the attention that was paid on the part of their provider to exercise. And if patients remembered hearing about exercise, they were much more likely to do it. So I think that something that we really need to better tease out is, what is the patients' receptivity to this type of information? And are the suggestions that oncologists are making enough to get patients, on their own, to seek out a program? Or do we really need to try to educate providers about effective ways of making referrals? I think the reality is that we also need more programs that patients can be referred to. And something that I think is a real need within the oncology space is programs that help people lose weight that are able to help people become more active, and recognizing some of the limitations that many patients have as a result of their therapy. Things like lymphedema, things like neuropathy, that can be barriers. How can we manage those in oncology patients to help them successfully achieve these behavior changes? And this is, I think, such a great topic because patients really care about interventions that they can do themselves to help their cancer care and their health. And there's so much out there, in terms of complementary therapies and whatnot. But we have real data on things like diet and exercise, and I think more attention being paid to this within cancer centers would really be welcomed by patients. I think so too. You know, we, right now here at Dana-Farber, are leading a trial called the Breast Cancer Weight Loss Trial that's a phase III study looking at the impact of a weight loss intervention on recurrence in women who are overweight or obese when they're diagnosed with breast cancer. And when we started this study, we weren't sure what the uptake would be. It's a very different type of model. But we've enrolled now more than 2,000 patients in less than three years. So there's definitely a very, very significant interest in this topic amongst patients. There's a similar trial going on in ovarian cancer that just enrolled 1,000 patients with a disease that's much less common than breast cancer over just a few years. So I think that the interest on the part of patients in this topic is large and we want to be able to provide them with evidence-based recommendations. There's a lot of stuff out there that's not so evidence-based, especially about diet, and I think that, as oncology providers, we really owe it to our patients to get them the best information that we have about things that they can do to help improve their outcomes and to make themselves feel better during and after their cancer treatment. And we're very lucky to work at institutions like the Dana-Farber Cancer Institute or here at the Cleveland Clinic, where we've actually got a lot of resources devoted to these efforts. But what can people who work at smaller institutions, or really don't have a lot of infrastructure for this, where can they access data or suggestions on how they can counsel patients or help their patients address problems with obesity and lack of physical activity? Is this something that ASCO can help with? So as part of the ASCO Obesity Initiative, we developed toolkits for oncology providers and for patients about the role of weight management and physical activity in cancer. And so those are available at cancer.net. They can be downloaded. You can give them to your patients to start a conversation about the importance of these topics in oncology care. The American Cancer Society also has diet and exercise guidelines for cancer survivors that oncologists can use as a guideline. The American College of Sports Medicine also has a website where they have oncology-trained exercise professionals in different communities. So if a patient wants to work with a trainer that has an understanding of the complications of cancer treatment and the side effects that patients have, that's another good resource. The other thing that is available in many communities is the Livestrong at the YMCA program, which is a free exercise program that's offered for cancer survivors. This is offered now in more than 700 YMCAs across the country. It's a 12-week program that includes both aerobic exercise and strength training. And this is a resource that I send a lot of patients to, and that is available to people not everywhere, but increasingly more places. So that's another good resource for oncologists and for patients across the US. Well, that's fantastic. So good, I'm glad we got to plug that on the podcast. And Dr. Ligibel, thanks so much for talking to me today. Thank you. And I also want to thank all of our listeners out there who joined us for this podcast. The full text of the paper will be available online at ASCOpubs.org/journal/JOP in June 2019. This is Dr. Nate Pennell, for the Journal of Oncology Practice, signing off.
Rank #7: Potentially avoidable hospital readmissions in patients with advanced cancer
Hello and welcome 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. Potentially avoidable hospital readmissions are a major target for reducing costs in the health care system. However, for cancer patients, the issue goes way beyond cost.
Many of our advanced cancer patients have a limited lifespan. And every unnecessary day they spend in the hospital is one less day they spend at home with their loved ones. The reasons behind cancer patient readmissions may differ from other types of patients. And so broad efforts to reduce hospital readmissions may not apply quite as well to this population unless we understand the specific reasons behind readmissions for our vulnerable population.
Today we're going to be talking about this topic with Dr. Patrick Conner Johnson, hematology oncology fellow at the Dana Farber Cancer Institute Massachusetts General Hospital fellowship program about his and his co-authors' new study titled "Potentially avoidable hospital readmissions in patients with advanced cancer," which was published in the May 2019 JOP. Welcome, Conner, and thank you for joining me today.
Nate, it's truly an honor to be on the podcast. I appreciate your time and [INAUDIBLE].
So first of all, can you give us a little bit of background on why hospital readmissions are a topic that people are talking about? How big of a problem is this and what's the scope of the issue?
To start with, just hospital admissions period are a major topic within cancer care and all of medicine. If you go back to the health care cost and utilization project report since 2009, more than 4.5 million cancer related hospitalizations amongst adults. So that's hospitalizations.
Some percentage of these are potentially avoidable both in the general medicine literature and in the oncology literature. and both from a cost and value standpoint and from quality of cancer patients' lives, I think these are important issues to think about in terms of addressing.
And then when we looked, particularly in our study, we focused on readmissions by which we define having a panel of patients who already had admission once and then looking at subsequent admissions after that.
There is a fair amount of literature out there looking at causes of hospital readmissions as a target for improving value based care. What do you think is different about cancer patients that makes this something we need to study uniquely in them?
I think, in general, amongst a variety of different subspecialties, there's an importance in focusing on targeting each individual population to understand the nuances of that population, whether that's a literature on COPD or heart failure. And oncology in particular is still a wealth of drugs with a wealth of potential consequences and with a sub-population within oncology of advanced cancer patients who have defined limited lifespans.
There's a whole host of factors and different unique circumstances that could potentially affect their readmission profile a little bit different than other general medicine populations. And I think the greater understanding we have of each subset of patients within a number of disciplines is probably going to target our interventions to be more likely to be successful.
And I think that makes perfect sense. One of the other things you mentioned in the background section of your paper is that many of the studies looking at potentially avoidable readmissions have not incorporated patient reported outcomes. And why do you think that would be an important thing to include in the study?
I think looking across oncology care, the study by Dr. Schrag and Dr. [? Basch ?] and colleagues comes to mind. There's been an increasing interest in incorporating patient reported outcomes in order to better pair these with our other outcomes.
And I think that our hope with this was to gain a greater understanding of what kinds of symptoms and other things patients report and trying to identify if there is any correlation with admissions. And the same thing's being done across a number of different facets of oncology care.
Yeah. I'm not sure people outside of oncology understand that there's a significant percentage of our inpatients are admitted for symptom control specifically as opposed to general medicine problems like pneumonia or blood clots.
And so definitely in that case being able to assess their symptom burden makes perfect sense when you're trying to do the kind of study that you're doing. So speaking of your study, can you walk us through the design? How did you put this together?
So this was a longitudinal cohort study of consecutive patients that were admitted to the hospital. And patients were enrolled. And as part of their enrollment, their symptoms were assessed at the time of their enrollment.
So this was a one time symptom assessment within two to five days of their hospitalization when they completed a symptom burden questionnaire essentially. We took available data that we had.
And we had two coders go back, review the medical record with a focus on the discharge summary to try and understand the reason for hospital admission. And then we had a peer review system to try and identify which readmissions were potentially avoidable.
And we used some adaptive criteria, which has been utilized in some other studies in leukemia an GI cancer. And that process was essentially two physicians doing an initial coding review using these criteria. And then anything that was considered potentially avoidable by either of those physicians went to a panel that included two board certified oncologists.
Yeah. I'm curious about this. I know that there are published methods for how they do this. But can you give us an example? How do you determine if a patient had an a potentially avoidable readmission? What's an example of something they might find.
There's no question that it's a challenge. And it's rife with some subjectivity at times. In order to try and minimize that, we have defined criteria. For an example, one of those is premature hospital discharge, which in this study was defined as being readmitted within seven days of discharge with identical symptoms to the prior admission. And that's by a review of the hospital discharge summary.
OK. That makes perfect sense. And you would think that that would be a significant risk for patients since the length of stay is such a big target for hospitals to try to reduce costs. And also our patients typically want to go home.
You know, we have to sometimes convince them to stay when we think they need to stay. OK. So if they were readmitted within seven days with the same symptoms that's how you determine that. So tell us some of what you found.
Thanks, again. Major points from our paper are, first, similar to some other studies that try and look at potentially avoidable hospitalizations at large. More than 30% of the admissions were qualified as potentially avoidable readmissions, which I don't think is anything that has ever been described.
Again, that's fairly consistent with actually the general medicine and with some other oncology literature, but it speaks to the importance of the topic and the sizable possibility of interventions down the road. And the two major important risks that we identified in a multivariable model were marital status, and which we think is a proxy for social support and was protective against potentially avoidable readmissions, and higher physical symptom burden.
And those with higher physical symptom burden were more likely to have potentially avoidable readmissions. And finally, when we looked at the most common reasons as using our criteria for potentially avoidable readmissions, those were premature discharge from a prior hospitalization and also not having what's called a timely follow up, which was a seven day follow up. And so that speaks in our mind to the hazardous time period that is the discharge is fraught with a lot of possibilities of difficulty in terms of making that transition.
Yeah. I think that makes perfect sense. I know our institution in particular has instituted a mandatory call from the outpatient team to a patient the day after they're discharged to just check and see how they're doing. And then we try to get everybody an appointment within seven days although that's not always possible. Are there any other interventions that you think would come out of what you found that might help reduce potentially avoidable readmissions?
I think from the social support side of things, given that social support can be challenging, there is an idea that if we identify patients with that limited social support that that might be the patients that we target for patient navigation programs, more intensive social work involvement programs, or a specially designed care transition programs at hospital discharge as well as potentially patients who have a higher physical symptoms.
And the association with higher physical symptoms also makes perfect sense, although that's always a challenge to address appropriately. I know that there's a lot of focus certainly in solid tumors about integrating palliative medicine and [INAUDIBLE] of medicine support for patients with solid tumors to control that. Is that something that you think could be helpful in this setting as well to help reduce readmissions?
Absolutely, Nate. I think that the hope would be that this also raises a possibility of identifying a patient population that may already be plugged in with palliative care. But if they're not, this could help identify another group of patients that can benefit from integrated palliative care with the hope being that we can identify interventions that can reduce their hospitalization burden.
And where do you think we're going to go here in terms of research. So you've identified some nice potential associations. And there's some low hanging fruit in terms of arranging fast follow up. But what's the next steps in terms of trying to reduce potentially avoidable readmissions for our patients?
I think an integrative palliative care interventions for those with high physical symptom burden. And I think that targeted interventions such as more intensive social work involvement or care transition programs for those with limited social support would be potentially good intervention based studies to start with.
I also think that, as you mentioned, you raised good points about there's still a good bit of research to having a greater understanding within the world of oncology. What is the ideal follow up after discharge for each sub-population even within oncology? And there's probably a great deal more research into understanding that as well as more about the physical symptom burden of hospitalized patients in oncology.
I don't know what your opinion is. Do you think we'll ever be able to avoid almost or all potentially avoidable readmissions?
No. I don't think so. I think that it's a patient population that has a high symptom burden and has a high complexity of care. But I do think that any interventions to reduce the burden of hospitalizations could potentially have far reaching consequences.
I know. I agree with you. I mean there's no way we'll ever be able to avoid this completely. And we all have experience with patients who we can tell when we're getting ready to discharge them that they're at high risk of not successfully transitioning home and yet they want to try.
Perhaps they might be better off in a facility where they could have a higher level of care. But they really want to try to get home. And we want to give them the chance to succeed. And it's just not always successful. So giving them every resource that we can sounds like the right thing to do.
[INAUDIBLE] I agree with you totally. I think the other point to mention is just that the care transition time is a very fragile one. And other interventions to try and improve that transition period as well are something that would be of interest for us or other folks to explore around this topic.
Yeah. It sounds like that would be ripe for a quality of care study to look and see if really intensive interventions in that first few days or a week after discharge can reduce this. I know that we've moved forward with doing that, but I'm not sure if we have any data that it's effective. But it certainly makes sense that it would be helpful. Connor, thank you so much for talking with me today.
Thank you so much for having me.
And I also want to thank all the listeners out there who joined us for this podcast. The full text of Dr. Johnson's paper is available online at ASCOpubs.org/journal/JOP in the May 2019 issue of the JOP. This is Dr. Nate Pennell for the Journal of Oncology Practice signing off.
Rank #8: 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.
Read the related article "Open Oncology Notes: A Qualitative Study of Oncology Patients’ Experiences Reading Their Cancer Care Notes" on JOP
Rank #9: What Should the Role of Radiation Oncologists Be in the Future?
Dr. Pennell and Dr. Neha Vapiwala discuss the role of radiation oncologists be in the future.
Rank #10: Design Challenges of an Episode-Based Payment Model in Oncology – The CMS Oncology Care Model
Rank #11: ASCO Core Curriculum for Cancer Survivorship Education
The author discusses survivorship care, one of the most
challenging problems oncologists face today and in the near future.
The core curriculum and competencies outline in his manuscript are
fundamental to the relatively new field of survivorship care, and
provide the framework necessary to generate appropriate referrals
depending on local practices and expertise
Rank #12: Lung Cancer Care Team Development
Dr. Ray Osarogiagbon discusses the need for the development of “real” care teams for lung cancer patients, to foster coordination among the multiple specialists and staff engaged in routine care delivery.
Rank #13: Opioids and Cancer Pain: Patients’ Needs and Access Challenges
Hello, and welcome 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. The opioid crisis continues to be a major public health issue, with increasing attention at both the state and national level. Efforts to address this issue are highly relevant to oncologists, because we treat a unique population of cancer patients for which opioid prescriptions are an established standard of care. So how will these efforts to address the opioid crisis impact the care of our patients? And what role can oncologists play on this issue? Today, we're going to be talking about this topic with Dr. Ray Page medical oncologist and hematologist at the Center for Cancer and Blood Disorders in Fort Worth, Texas, who currently serves as chair of ASCO's Clinical Practice Committee, is on the ASCO Government Relations Committee, and is the current ASCO delegate to the AMA House of Delegates, about his new editorial titled, "Opioids and Cancer Pain, Patients' Needs and Access Challenges," which will be published in the April 2019 JOP. Ray, thanks for joining me today. Thank you. So can you start out by giving our listeners a little background on the magnitude of the opioid problem in the US. Sure, Nate. Let me just first say, the opioid epidemic is real and is startling. The CBC reported that in 2017 that over 72,000 in the United States died from drug overdoses. And this included over 47,000 people who involved in drug overdoses of opioids. And most of us have heard from the media that the biggest increase in use is through that synthetic opioid fentanyl. And it's often laced with heroin. And the recent volumes that have confiscated at the US border are enough to kill ever single US citizen. And the escalation of opioid abuse is really complex societal issue. And it includes contribution from all of those social determinants of health and mental illness. And when policymakers sometimes they like to look at a one size fits all kind of solution, which means they oftentimes want to largely focus on physician prescribing habits and just regulating patient access to opioids. Is there evidence that this kind of solution of targeting opioid prescriptions is impacting opioid prescribing in cancer patients? There is a negative impact there. But let me just say that cancer pain is very real and it's very frightening. And we know that cancer pain is historically undertreated. 8 out of 10 advanced cancer patients experience moderate to severe pain. And about 55% of cancer patients and 40% of cancer survivors experience chronic cancer related pain. So upwards of 43% of cancer patients and 10% of survivors use opioids to manage chronic cancer pain. Because of the heightened media awareness about the opioid epidemic, cancer patients are really experiences a lot of fear firsthand. Many of my patients have expressed to me that they actually have a fear of dying from taking opioids. And there's also of addition. And then on the other hand, they also have a fear that they may not even be able to get their hands on pain medicines at all. That actually is a really interesting topic that I hadn't thought of because I have the same problem with my patients worrying about taking opioids. You think that this being so much in the public eye is really influencing cancer patients' ideas about whether they should be taking opioids or not. They feel like they're at risk for addiction and contributing to the problem. Our cancer patients I think do have those real concerns and they have fear over it. And we're actually seeing that about a 1/3 of cancer patients and survivors are actually having difficulty to getting access to their prescribed opioid medications. And that has continued to increase markedly since just a few years ago in 2016. And the vast US oncology practices are concerned that restrictions on opioid prescribing is going to ultimately result in undertreatment of cancer pain. So it's these kind of dynamics what makes it difficult for physicians to treat pain, particularly cancer and cancer survivors. And while judicious prescribing is important, patients with cancer and cancer related pain, they need to have consistent access to pain control. Well, I think we can all agree on that. Before we talk about how we can protect cancer patients' access to these drugs, can you talk a little bit about what is being done sort of at the state and national level to address the opioid crisis and sort of how that's impacting our cancer patients? Yeah, absolutely. The opioid epidemic will continue to be a bipartisan priority for both state and federal governments with currently over 100 state bills that are out there that are identified. In a lot of upcoming state legislative sessions, there will be consideration of bills that are related to such things prescription fill limits and prescription drug monitoring programs and opioid prescribing guidelines. And we're all expecting to see bills that are going to be related to the identification of outlier prescribers and bills that are promoting the utilization of opioid alternative therapies in the cases of both acute and chronic pain. Just on the federal level, you know in 2016, President Obama, he signed the first major federal addiction law in 40 years. And that was the Comprehensive Addiction Recovery Act. And that bipartisan legislation authorized evidence-based prevention and treatment programs and recovery programs and law enforcement initiatives to help prevent overdose death and proper prescriptions. And as you had asked, in 2017 when President Trump came into office, he announced that his administration was declaring an opioid crisis and made a national public health emergency under federal law. And as a result, the White House office of the national drug control policy directed numerous federal agencies to address the opioid problem. But that was largely within their current budgetary confinements. But I think actions by both administrations had positive impacts on the opioid problem primarily just by initiating activity in our government agencies. So when the various laws and policies are passed, do they have built in protections for vulnerable populations that need access to opioids, like cancer patients? Yeah, that's one thing that we've pushed a lot for. And in general, most of them do. And so President Trump signed a sweeping legislation in 2018 that was touted as the single largest bill to combat the drug crisis in our countries history. And there was a lot of efforts to do things like expanding access to treatment for substance abuse disorders and those kind of things. But, for example, January 1st of this year, as part of that law, it included new opioid prescribing policies that will impact Part D beneficiaries and the prescribers. And this includes such things as real-time safety alerts on pharmacy dispensing of opioids and drug management and utilization tools and the improvement of communications between the pharmacists and the physicians. But as you asked, one important note about this legislation that was passed is that residents of long-term care facilities and those that are in hospice care and patients receiving palliative care or end of life care, and patients being treated for active cancer related pain, they are exempt from a lot of these interventions. Well, it's good that at least someone is considering our patients in this. But I know that certainly-- I believe ASCO has quite a bit of concern about maintaining access to patients. So what role is ASCO playing in this issue? You know, Nate, ASCO is very sensitive to the needs, to address the opioid crisis and to support thoughtful and evidence-based interventions aimed at decreasing substance misuse and abuse and overdose death. However, ASCO really continues to advocate for appropriate access to pain medications for cancer patients, recognizing that that typical one size fits all solution risks oftentimes marginalizing our cancer patients and their needs. And so in 2016, ASCO released an ASCO policy statement on opioid therapy which emphasizes the unique pain management needs of patients with cancer and especially those with advanced disease. And in this policy statement, ASCO points out a lot of core principles to balance public health concerns and cancer patients' needs. Well, I really like the fact that ASCO is focusing not so much on specific individual needs, but rather making sure everyone recognizes that there is no one size fits all solution here and also you know acknowledging that there is a real problem with opioid misuse in the United States, but that our patients need to be considered carefully in this. One of the things I liked about your editorial was focusing on how physicians might actually be able to learn about managing pain in cancer patients and not necessarily just focusing on the use of opioids. Can you talk a little bit about that? Yes, sure. You know, just in general, as we all know, as oncologists, we rely heavily on the use of opioids. But we should never rely solely on the use of opioids. And we need to determine if opioids are indeed the right drug for particular type of cancer-related pain. And so ASCO published recent clinical practice guidelines for chronic pain management in cancer survivors that gives advice on careful assessment of pain and its effects on function and of the possible risk associated with an opioid. And so I generally recommend that clinicians review some of these practice guidelines because many of these recommendations can help reduce opioid prescribing and actually consider other good, viable non-opioid alternatives, such as using pain specialists and other interventional procedures. Yeah, I think everyone would benefit from being aware of the problem and making sure that they are using opioids appropriately. I guess I'm just a little concerned about how all this attention is impacting our patients and their access to drugs. We did a JOP podcast, oh, I think a year or so ago with Dr. Bruera, who is a palliative care specialist at MD Anderson, who published a study showing that palliative care physicians were actually prescribing significantly less morphine equivalents for cancer patients. And there was a lot of alternative treatments, such as tramadol, that were being used. And we had a nice discussion about how perhaps some of that was a good idea. But they're also putting sometimes patients at risk of being under treated. Yeah, that dynamic is very complex, because I think we all realize that are certain types of pain that do get effectiveness with opioids to get appropriate pain relief. But the palliative doctors are usually very good and many oncologists also about entertaining those alternatives. And so oftentimes there are many kinds of cancer pain syndromes, both acute and chronic that can be managed with non-opioid alternatives. We as oncologists, we realize that this is a really vulnerable patient population. And we'll continue to develop and utilize all the latest advances in the comprehensive management of cancer in accordance with published evidence-based physician developed guidelines. However, we also want to design the statutory and regulatory requirements do not unduly restrict access to opioids and acknowledge the need to exempt cancer-related pain in our opioid policies. And I think that's absolutely critically important. And you know this is exactly the kind of function that societies like ASCO and the AMA really exist for, to protect our patients and the physicians who are prescribing these necessary medications to our patients. Well, it's been my pleasure to share this publication with you. And I hope it will be an important educational tool for the oncologists to work on to deal the opioid access problem for our patients. Thank you so much for joining me. I also want to thank all of our listeners out there who joined us for this podcast. The full text of the paper will be available online at ascopubs.org/Journal/JOP in April 2019. This is Dr. Nate Pennell for the Journal of Oncology Practice signing off.
Rank #14: The Farid Fata Medicare Fraud Case and Misplaced Incentives in Oncology Care
The author shares his experience as an expert witness in an oncology Medicare fraud case in Michigan.
Rank #15: Cost and Survival Analysis before and after Implementation of Dana-Farber Clinical Pathways for Patients with Stage IV Non-Small Cell Lung Cancer
Dr. David Jackman of Dana-Farber Cancer Institute discusses how after introduction of a clinical pathway in metastatic NSCLC, cost of care decreased significantly with no compromise in survival.
Rank #16: Assessing Clinical Trial–Associated Workload in Community-Based Research Programs Using the ASCO Clinical Trial Workload Assessment Tool
Author Marge Good discusses the results from this project which demonstrate that trial-specific acuity measurement is a better measure of workload than simply counting the number of patients. The ASCO Clinical Trial Workload Assessment Tool was shown to be feasible and useable in diverse community-based research settings.
Rank #17: Screening for Pancreatic Adenocarcinoma using Signals from Web Search Logs: Feasibility Study and Results
Dr. Horvitz and his co-authors found that signals about patterns of queries in search logs can predict the future appearance of queries that are highly suggestive of a diagnosis of pancreatic adenocarcinoma.
Rank #18: What Enables Oncologists to Discuss Goals of Care With Their Patients?
Dr. Pennell discusses practical ways toward a culture of kindness, transparency, and responsibility with author Dr. Anthony Back.
Rank #19: CancerLinQ Update
Dr. Robert Miller provides an update on CancerLinQ (Cancer Learning Intelligence Network for Quality), ASCO’s big-data, health information technology platform for oncology practices nationwide.
Rank #20: CancerLinQ: Cutting the Gordian Knot of Interoperability
With the care of patients with cancer strewn across numerous settings, are electronic health records (EHRs) meeting the definition of interoperability according to the 21st Century Cures Act? Dr. Pennell speaks with author Wendy Rubinstein.
Read the related article "CancerLinQ: Cutting the Gordian Knot of Interoperability" on JOP.
Hello and welcome 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. Most oncologists in America today use an electronic medical record, or EMR. But for a number of reasons, few of us are able to access records for patients outside of our own practice, a concept that's known as interoperability. Today we're going to be talking about a new editorial published as part of a series called "The State of Cancer Care in America." This editorial is titled "CancerLinQ-- Cutting the Gordian Knot of Interoperability," published in the January 2019 issue of the JOP. Joining me on this podcast is the author Dr. Wendy Rubinstein medical geneticist and Deputy Medical Director at CancerLinQ, LLC. Dr. Rubinstein, thank you for joining me today. Thanks for having me. So I know that this is not going to be a surprise to any of our listeners, but would you mind just kind of giving us a little background on the issue of EHR interoperability, and how did we end up with the scenario that we have today? Well, sure. Of course, electronic health records systems weren't built with interoperability in mind. The overarching goal for hospitals was documentation to support billing, and it hasn't been a priority for hospitals to make it easy for their patients to interact with other health systems. But to be fair, people didn't talk much about interoperability 10 to 15 years ago. And I'm not even sure an official definition existed. So now the 21st Century Cures Act provides a definition. So basically, electronic health information should be able to be securely exchanged with other health information technology. And there should be no special effort required by the user, especially and including patients. And the data exchange for the authorized use, it needs to be completely enabled under applicable laws, and any information blocking is prohibited. So what this comes down to, basically, is that a patient should be able to have care at one medical office, and then go to a separate system across town, without having to fill out another paper form with their complete medical history, medication list, and review of systems all over again. So part of the article talks about, and you mentioned, the ASCO Oncology Practice Census. And in 2017, the practice census found that 40% of practices were unable to accept any patient information from other practices. And you might think that the problem is getting better with attention to it, but actually, it's getting worse. In the 2016 practice census, 34% of oncology practices said that their EHR was interoperable with hospitals in their region. But in 2017, only 10% were interoperable with regional hospitals. So in oncology, this is especially important because cancer patients typically have their care strewn across multiple specialists, surgery, radiation oncology, medical oncology, and more. So with their care being decentralized and being complex, how can we really subject our patients to recounting their entire history every time they come to a new specialist? And we're relying on them to be savvy about their cancer history and to be accurate about it. And this is often the worst time of their life. So without quite saying it to them, we're basically letting them know that we don't communicate with our other doctors. And I have to say, sometimes my own medical profession embarrasses me. Yeah, it's interesting. I mean, it's a couple of different issues, the first being of just simple interoperability and having access to your patients' records when they're not within your system. The traditional way of doing this is you've typed up a letter or a note from what you've done, and then you mail it to the other physicians who are either the primary care doctor or the person who referred to you the patient. And strangely enough, that's still mostly how this happens. I have a sophisticated electronic medical record that puts together a sophisticated note filled with all kinds of important information, which gets printed out and put it in an envelope and mailed to someone, rather than sending that electronically and having it available whenever they need it. They have to somehow come up with a way to scan that into their system so that they can read it. So it's really remarkable that we're still in that system. And I now have limited interoperability with other people through my own EMR, and it's just astonishing how much easier it is to keep track of people with that. Once you start to get a taste of the potential of that, it's really hard to go back and not be able to access patient's records anymore. Everyone I think is a little bit aware of this issue and becoming increasingly aware of this issue. What are the barriers out there to making EHRs interoperable? It just seems like such an obvious thing to do, and yet it somehow is a difficult process. To attempt to maybe take something complex and bring it to some basic issues, I can call out a couple of issues. One is extreme customization, and the other is that we need a common language that can speak across different implementations of electronic health records. So with extreme customization, and this is how I would characterize it. So customization is very effective at locking up health information and preventing it from being exchanged. And for any EHR vendor, offering a way for clinicians to customize their reports, their documentation, it really is a great way to satisfy them. And in fact in my own experience, my cancer genetics practice became very efficient by creating templates for notes and letters about genetic testing and managing patients at high risk of cancer. But if you think about it, when I recorded a diagnosis of colon cancer in a letter to the patient or the clinician, it wasn't mapped to any standard vocabulary or code. It can't be shared other than as a TXT file. When you talked about bringing in scanned documents, yes, you can look at them, but they're not machine computable. In fact, if you like to know how many ways you can say total neutrophil count in an electronic health record, CancerLinQ was in the unfortunate position of figuring this out. So in the first 30 oncology practices that CancerLinQ received data from, there were 76 distinct ways to say total neutrophil count, like white blood cell count or WBC. And that means that there were more than two names per organization on average, even within an organization. There's no agreement on what to call this. So it's certainly true. We, as human beings, we can all semantically process different terms for total neutrophil count, but a computer can't. It can't do that, unless we provide a mapping or we create it. So this basically locks up the data and reduces its value. So to extract the value, we apply natural language processing and human observation using interfaces. But that's expensive, and the problem is it doesn't help at the source. You still have the EHR, it's not really aggregated together yet, and in the day to day workings, you're not really doing anything to solve the problem. So the other problem which is very much related is we need a lingua franca. We need a common language to make the proper use of the data that we have in EHRs. And so on a higher level, ASCO and CancerLinQ have convened a volunteer stakeholder group, and this represents diverse perspectives in oncology, different specialties coming to the table. And the purpose is to create a core set of data elements from oncology called mCODE. So mCODE stands for Minimal Common Oncology Data Elements. And ASCO is aligned with other medical organizations, as well, and the Biden Cancer Initiative, so that together we can inform oncology EHR vendor design. We can inform their decisions and, hopefully, prompt interoperability to improve cancer care. One of the things that's-- of course, you now work with CancerLinQ. Can you tell us just a little bit about CancerLinQ and how CancerLinQ can work to overcome some of these issues? Sure, I'd love to. So CancerLinQ is a major initiative at ASCO. And the goal was to create a learning health system for oncology. So first and foremost, CancerLinQ is a quality measurement and reporting system. We have over 100 health care organizations. These are large and small, they're community and academic, that are participating in CancerLinQ. And so far, we've established data flows with 47 organizations, and we've integrated data for over a million patients with cancer. And that reflects their comprehensive longitudinal record of health. So by doing this, the reason to do this is we're enabling practicing oncologists to measure, and report, and improve the quality in patient care. So when you look at, for example, the 2017 ASCO Oncology Practice Census, about 25% to 30% of practices, they called out quality measurement and reporting activities as a top burden for them. In order for them to do this, they have to actually do manual extraction from electronic health records, if you can wrap your mind around that. You have to pay to do that. So the CancerLinQ platform reduces the reporting burden by displaying the quality measures for MIPS, MACRA reporting and also supports ASCO's QOPI certification. And what this means is that clinicians can actually see the time window they have left to take specific actions to meet the quality benchmarks. The other part of CancerLinQ is that we provide statistically de-identified data sets from the cohort to researchers and to FDA. And in that way, we're trying to accelerate discovery and scientific improvements to cancer care. Yeah, it's a fantastic initiative, and I'm glad to see that it seems to be growing and doing well. The next question would be, how can CancerLinQ, aside from individual practices being able to use the data for quality metrics and, of course, the anonymized pool data for research, how is this working to overcome problems of interoperability? So CancerLinQ is somewhat unique in that we've integrated data from practices, so far using seven different electronic health records. So we don't limit, we feel we can't limit the data aggregation to a single EHR type because the overall goal is to learn from all patients. But there are some common problems that we share with other big data providers. So any entity that's performing data aggregation, they're also coming up against the same problem we have, as needing a common language for oncology, such as mCODE. And as I mentioned, ASCO is looking to engage everyone who has this common problem to solve it together. One barrier I can't resist talking about as a geneticist is the way genomic data is handled. The one disturbing practice is that really the way DNA sequencing data exists is it's completely structured in machine computable when it comes off the sequencer. I mean, almost by definition. And then the results get reported by paper, and even if there is an electronic file sent to the practitioner with the report, there's nowhere in the electronic health record to store the genetic test data in its rich detail. So the report might get scanned or copied someplace, and it'll get attended somewhere where you can go visualize it. If it's scanned in, it loses all of its structure, and then it requires optical character recognition and very messed up tables to try to make sense. So if you think about it, like what we want to do with that data, how can we automatically run clinical quality measures for colon cancer without having a place for KRAS gene test results? That's already in all the quality measures. If an oncology practice is running Molecular Tumor Board, how can they do that with reading off of this piece of paper? They need the files to really run that activity. And the same thing is true for identifying patients who are eligible for a clinical trial, increasingly based on a molecular variant result. So we can do that to some extent. We can do all these things, but we really can't scale precision oncology with these kinds of limitations. So I think a common theme across CancerLinQ and other entities that are trying to aggregate data and especially to combine it with the rich phenotypic data in electronic health records, the molecular diagnostics laboratory should routinely make these results available to the ordering clinicians as structured data files. It may be difficult for them to maintain it themselves. The electronic health record really should have a place for this, which with mCODE, that will definitely be a part of mCODE. Where do we go from here? How do we get from where we are today to the world where all this information is easily shareable across EHRs? The technical challenges there, but really it's about collaboration and having a will to solve this across the entire ecosystem. So we have created an organization called the Oncology Leadership Council. So CancerLinQ's Oncology Leadership Council includes corporate nonprofit and government collaborators and, for example, the American Society for Radiation Oncology, National Cancer Institute, FDA, the Cancer Informatics for Cancer Centers, Ci4CC, AstraZeneca, College American Pathologists, American College of Medical Genetics and Genomics, and many others. Now ASCO doesn't think that this is something that we could or should solve alone. This really means helping the entire oncology community to improve care by solving the problem at the source. And that means capture all of the important oncology data as structured, computable information. And we have to do this without imposing any more documentation burdens on physicians. And frankly, we shouldn't really be hiring an army of data entry clerks to do this either. I like to think about call to action. What can people do, given the situation? So I would like the listeners to know that the Office for the National Coordinator for Health IT is right now soliciting comments on what they call the strategy on reducing regulatory and administrative burden relating to the use of health IT and EHRs. So ASCO is currently preparing comments, and you'll have a chance to review and provide feedback. And I also wanted to let listeners know that you can also participate in the writing of comments, which is going on by the American Medical Informatics Association, AMIA. The comments are due soon, on January 28, 2019, but input would be very valuable. I'd also like to mention that CancerLinQ is concerned about information blocking. And as I mentioned before, information blocking is prohibited by ONC. And lastly, I can't resist inviting people, that if you're interested in joining CancerLinQ, please contact us. Excellent. I think that was a good idea to put that message out there. And I will also put the plug in that joining CancerLinQ is actually free of cost to get this wonderful resource. You bet. Dr. Rubinstein, thank you so much for talking with me today. Thank you, it's a great opportunity and a real pleasure. And I also want to thank our listeners out there who joined us for this podcast. The full text of Dr. Rubinstein's paper, "CancerLinQ-- Cutting the Gordian Knot of Interoperability," is available online now at ASCOpubs.org, backslash journal, backslash JOP in the January 2019 issue. This is Dr. Nate Pennell for the Journal of Oncology Practice signing off.