CYCORE – Information Technology Tools Helping With Clinical Trials

MD Anderson Cancer Center
Date: 1-02-2012

Lisa Garvin: Welcome to Cancer Newsline: a podcast series from The University of Texas M.D. Anderson Cancer Center. Cancer Newsline helps you stay current with the news on cancer research, diagnosis, treatment and prevention, proving the latest information on reducing your family's cancer risk. I'm your host, Lisa Garvin. Today our guest is Dr. Susan Peterson. She is an Associate Professor in Behavioral Science here in M.D. Anderson. And we're going to be talking about something called, "CYCORE." So Dr. Peterson, what exactly is CYCORE? It sounds like an attempt to kind of standardize treatment paths for certain types of cancer.

Dr. Susan Peterson: Well CYCORE is a research project and it's supported by The National Cancer Institute through a Grant Opportunity grant. CYCORE is an acronym actually that stands for Cyberinfrastructure for Comparative Effectiveness Research in Cancer. And what we're attempting to do in this project is to build a prototype system that is intended to collect data on behavior and other health outcomes using a variety of different technologies and then to integrate that data with other sources of data and other resources and types of information that will give us a better picture of what's going on within research trials and even possibly clinical practice.

Lisa Garvin: So basically you're looking at people in clinical trials. What sorts of things are you measuring? Like response to treatment, lifestyle things, what are the measurements here?

Dr. Susan Peterson: So we are actually developing a system that hopefully will improve the collection of data in research trials that's currently not being collected as well as we'd like. So for example, data on behavior is very important and very relevant to cancer: both cancer prevention as well as cancer outcomes and cancer survivorship as well. But -- and often in many cases our ability to collect data about behavior and what people do, what they eat, how much physical activity they engage in and those sorts of things, whether or not they've taken their medications or adhere to their treatments, in some cases the only way that we can collect those data is through self report. So what CYCORE is doing using more objective measures of data collection: so using a variety of different kinds of sensor technologies. For physical activity for example, for expired carbon monoxide which can indicate smoking behavior, for movement using GPS and other similar sensors to provide more objective measures of some of these behaviors that we believe are important both in prevention as well as cancer outcomes.

Lisa Garvin: Because I know it's tough, of course in a clinical trial many things are strictly controlled but it's mostly around the treatment or the behavior itself. So what sort of sensors are you using? Are people putting like patches on themselves that are reporting to a machine? You're talking about sensors. What sort of technology are you using to measure these behaviors?

Dr. Susan Peterson: So let me take a step back and mention that this project is really being done under what we call, "Cancer Comparative Effectiveness Research." And so it's really the -- comparative effectiveness research is -- aims to really examine how effective treatments are when employed in real world, real life settings. So that's really what the overarching theme of this study is. But to give you an example of the kinds of sensor devices that we're using, let me tell you a little bit about the project and sort of how we've structured it. The way that we have designed this project, this is really a kind of a prototype system. And we're identified some end problems that are important both in cancer prevention as well as in cancer survivorship. And those end problems are really shaped around some real world studies and problems that we're grappling with right now in cancer. So one of the cases that we're building our system around involves long term monitoring of tobacco use, following tobacco cessation treatment. Another one is physical functioning and physical activity in advanced colorectal cancer survivors because we know that cancer survivors with advanced colorectal cancer are often on long term chemotherapy. And this can put them at risk for various side effects of treatment including fatigue, diminished physical functioning and others. So we're looking at ways to monitor some of those outcomes. The other case that we're focused on is looking at the treatment for head and neck cancers. So patients with head and neck cancers have a pretty good 5 year survival rate - around 80 percent - but the treatment can be very challenging. It involves chemo and radiation to the head and neck area and this can often damage some of the muscles and other tissues in that area and can result in decreased saliva production, mucusitis, and that results in difficulty swallowing which makes it difficult for patients to eat or drink. So within that group of patients because they may have difficulty swallowing - it can be very painful - they could be at risk for dehydration or malnutrition. So one of the goals within that particular case that we'd like to try to do is to monitor these patients while they're at home using something very simple like weight monitoring using a scale and blood pressure monitoring using a blood pressure cuff because changes in those parameters might give us some indication as to whether or not a patient is at risk for becoming dehydrated. Also, head and neck cancer patients who are undergoing chemo and radiation therapy, because of the potential long term damage to their muscles in their throat area, they can be at risk for long term difficulties with swallowing. And so while they're undergoing treatment, they are advised to follow a series of swallowing exercises really: things to keep the muscles moving, a series of very simple predetermined exercises. But this can be very difficult for patients to follow because of the pain involved -- the pain that results after their treatment. So in order to help monitor whether or not patients are actually following these exercises, we're also using video capture while patients are at home. So when they're instructed to do the exercises, they're also asked to videotape themselves doing the exercises so we can keep track of whether or not they're really doing it and whether or not they're having any difficulty in doing so. So that gives you an example of kind of how we're using the system to collect some data in the home setting where really as -- when they're away from the clinic and they're not in here being seen as part of their research or clinical care, it's difficult sometimes to keep track of what patients are doing and often times we miss some really important information that could inform both our research but also could possibly help in clinical decision making as well.

Lisa Garvin: I know that information is very hard to capture and that's a problem in the survivor population too is that they tend to think, "Okay, I'm 5 years out. I'm cured. I don't need any follow ups. I don't need to monitor my lifestyle. I dodged a bullet." Do you find that there's that attitude that you have to overcome?

Dr. Susan Peterson: Well I think that's a great question and one of the goals of this study is A to develop this system for collecting the data and then bringing it into a large system that will enable us to analyze and look at it and integrate it with other sources of data like perhaps data that might be found in a patients medical record or other resources that we might draw from, from other resource studies. But another -- to get back to your question, an important feature of this project is really to assess feasibility and patient acceptance of this type of monitoring. And so sensors are everywhere. They're ubiquitous. I have a GPS monitor on cell phone. I can monitor my heart ate. I can keep track of what I eat. I can do a number of things all on my phone. And there are a number of other sensors that are widely used on the market. But really, integrating these and utilizing these in a system such as CYCORE is really new and novel. And so we're interested in seeing how this works again, in a real world setting away from the clinic where we're really relying on patients to take advantage of some of these devices and engage in providing information about their own health and their own healthcare. No what we find is that people in many ways really do like the ability to monitor themselves. So they like to see how they're doing. They like to get some feedback about their behavior and their -- some of their health outcomes. And so we've -- hope that that's going to be an engaging feature of this as well. And there's a lot of potential for this. I think you raised a great point about the need to really consider some of these behaviors and other health outcomes in our longer term cancer survivors. And so we feel that CYCORE has great potential for eventually being translated into other applications for long term survivors in a wide variety of research studies, in a number of different contexts. And so this is really one project that's going to get us off the ground by creating this initial infrastructure and we see many potential ways that this can be used in other studies and other real world settings as well.

Lisa Garvin: Well now how many patients have you seen in CYCORE and what sort of response rates to these monitoring techniques have you seen?

Dr. Susan Peterson: So we are actually right now - and that's another great question - we are in the process now of doing our patient recruitment and actually employing the CYCORE system in the field. So it's a little bit too early to tell you what are early findings are but we've gone through you know extensive preliminary testing and we're eager to see the results ourselves.

Lisa Garvin: So what sort of outcome or what is the upshot of this? Okay say we find that you know Patient A is still smoking even though he's in active treatment or Patient B is fatigued and not doing the exercise, are you trying to craft some sort of lifestyle goals? Or what is the end game here?

Dr. Susan Peterson: So the end game -- I mean CYCORE is really a tool to facilitate any number of outcomes. So this could fit very easily into a research study where you are monitoring long term outcomes following tobacco cessation treatment. This could fit very easily into another study where you are looking at the long term impact of cancer treatments, cancer therapies. And so it really is kind of a tool kit in a sense that could be employed in any number of clinical trials involving behavioral outcomes or potentially even other clinical outcomes of interest. And it potentially may have some usefulness for integration into other aspects of healthcare as well. You know, we have the ability within this project to do some real time monitoring of some of these outcomes to collect some data on more continuous data on outcomes. So not just what are people doing in short bursts of time when they answer a series of questions over the phone or through other means or capturing data in some other manner right now, but really what are they doing over say the course of their day or the course of a week or something like that? So that opens up the possibility for I think a lot of different applications. And one of the challenges of that is that - and with many of these sensing technologies - is that you get in a lot of data. And so one important component of our project - it's not just the upfront end where we're collecting the data using the sensor devices - but really is in making sense of these data and what do they mean. So when we get all this data in about what people are doing at various points of time, what are they not doing and such and then really integrating that with other information that we have in other resources, trying to make sense of what's going on and to translate that ultimately either into more meaningful research findings or to use that as a another way of -- or another piece of information in decision making either for clinical outcomes or for other outcomes.

Lisa Garvin: So are you looking for trends across the patient population or is this more individualized information?

Dr. Susan Peterson: And again, I think the answer to both questions could be yes. And so what again what we're doing within this project is developing a prototype system that can be then built upon so to speak. So almost thinking about it as a modular approach where we can build additional layers either through new sensors that will enable us to collect different kinds of data, but then also new ways to look at the data as well. So looking at it either on the individual patient level which as you know could have great value in terms of determining outcomes for individual patient, but yes and again across groups of patients. So what are we seeing across an entire group of cancer survivors? What are we seeing over time? I think that's the great potential of this project and it is one way where we hope to really exploit its features in the future.

Lisa Garvin: And it sounds like a way to really -- I know at M.D. Anderson, we're about the holistic approach, not just treating the disease but the person. But it sounds like this would be a great tool to help us accomplish that goal?

Dr. Susan Peterson: Absolutely, absolutely. And what we -- another opportunity for this project is not just to collect data, but also to potentially provide feedback to patients in a more timely manner. And so that could come in the way of enhanced support for patients in terms of management of symptoms, psychosocial outcomes, a number of other -- any number of areas. So we really see that as another really important feature and another great area for potential development in the future.

Lisa Garvin: Is this just solely an M.D. Anderson project, CYCORE? Are you collaborating with other institutions?

Dr. Susan Peterson: Well this is a really terrific collaboration between M.D. Anderson and 2 other institutions. We're collaborating with the University of California at San Diego and with an institute within that university called The California Institute for Telecommunications and Technology or CALIT2. That group brings to this project a lot of expertise in preventive medicine but also in the area of engineering, sensor development, super computing and other technological expertise. We're also collaborating with the University of Alabama Birmingham Comprehensive Cancer Center as well who brings to us diversity in terms of a different patient population and number of significant other expertise within significant areas of research within this particular project. And at M.D. Anderson we have 2 other main principal investigators here: Dr. Karen Basen-Engquist and Dr. Alex Prokhorov. And at UCSD our principal investigator is Dr. Kevin Patrick. And at the University of Alabama in Birmingham, it's Dr. Wendy Demarc Wanafried [phonetic].

Lisa Garvin: How do people find out about CYCORE? You say you're just about ready to kind of let it loose on the world.

Dr. Susan Peterson: Well we do have a website for our project and the URL for that website is And so you can go on there and learn more about the investigators and the different aspects of the project and read some more information about it.

Lisa Garvin: Great, thank you very much. If you have any questions about anything you've heard today on Cancer Newsline, contact Ask MD Anderson at 1-877-MDA-6789 or online at Thank you for listening to this episode of Cancer Newsline. Tune in for the next podcast in our series.