Transcript: The Importance of Clinical Trial Participation

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Good afternoon and welcome to Frankly Speaking About Cancer with the Cancer Support Community. Your host is Kim Thiboldeaux, President and CEO of the Cancer Support Community. This hour is designed to inspire, inform, and to help you live better with cancer. Now here's your host, Kim Thiboldeaux.

Kim: Welcome to Frankly Speaking About Cancer, an internet radio show that focuses on informing and inspiring people to live well with cancer. I'm Kim Thiboldeaux, CEO of the Cancer Support Community. The Wellness Community in Gilda's Club have united to become the Cancer Support Community, one of the largest providers of cancer support in the United States and around the world. Our services are offered at more than a hundred locations worldwide and online at

In 2016, an estimated 1.7 million new cases of cancer will be diagnosed in the United States, but less than a third of all cancer clinical trials meet their recruitment goals and only 2% to 3% of adults participate in the clinical trial.

Cancer clinical trials do provide patients with access to new therapies. When a patient participates in a clinical trial, they're helping to move cancer treatment forward and provide hope for the future of cancer care. On this episode of Frankly Speaking About Cancer, as part of our series on clinical trials, we will be discussing barriers to participation in clinical trials and how we can overcome these barriers to create new treatments that can lead to a cure.

Joining us to talk about what we can do to increase participation are two of the nation's top experts from the National Cancer Institute who are dedicated to fighting for better cancer treatments.

Our first guest today is Dr. Ellen Beckjord. During her time at the National Cancer Institute's Cancer Prevention Fellowship Program, Dr. Beckjord received a Masters in Public Health focused on Epidemiology and Biostatistics, completed Postdoctoral Research in the Health Communication and Informatics Research Branch within the Division of Cancer Control and Population Sciences. Currently Dr. Beckjord is the Director of the Population Health Program Design and Engagement Optimization with UPMC Health Plan where she focuses on Behavioral Informatics, Population Health, and use of mobile technology to promote health wellness and health behavior change. Welcome to the show Dr. Beckjord.

Ellen: Thank you.

Kim: Also joining us today is Dr. Brad Hesse. Dr. Hesse is the Chief of the National Cancer Institute's Health Communication and Informatics Research Branch. Dr. Hesse was recruited to the National Cancer Institute in 2003 and has since been focusing his energies on bringing the power of evidence-based health communication to focus on the problem of eliminating cancer-related death. Currently, Dr. Hesse is working with the president's cancer panel on their report on connected health and cancer. When completed, the report should provide direction to the President of the United States for how to bridge the gaps experienced by cancer patients and survivors. Thank you for joining Dr. Hesse.

Brad: My pleasure. Thank you.

Kim: Well, let's jump right in Dr. Hesse. I'm going to start with you and you know for our kind of basic listeners joining us today who maybe don't know what a clinical trial is. Can you really explain to our listeners what is a clinical trial?

Brad: Sure. I think the best way to think about it is that clinical trials are research studies that involve people. What that means is that they end up being sort of the final product of research that's done, beginning in the laboratory where we're looking at the characteristics of what might be a treatment substance of some sort, and then we see how effective it might be on isolated cancer cells. We then take that into an animal model. We get to a point where we think, "This could really be something for us." It could help us against a particular kind of cancer in a clinical context, but we need to find out what really does happen in that clinical context.

As we move into clinical context and we get it ready to learn to see if this is as good as anything we've got right now or much better, and our hope is that it's going to be much better. We rely on the participation of people who can help us in that research project and sort of serve as participants in that and partners in that to see if this is really going to be a treatment that's going to work and we can generalize.

Kim: Has every medicine that we see on the market today, has that gone through a clinical trial?

Brad: Yeah and that's an important point, especially if it's going to be approved by the Food and Drug Administration, it's got to go through this process. This is the final stage in order for anyone else to take advantage of these.

Kim: Dr. Hesse, can you just talk a little bit about really how the clinical trials work in terms of the sort of the difference, just quickly through the phases of the trials just so we can get our heads around those sorts of steps there?

Brad: Yeah. We like to talk about that initial phase which we talked about as the phase one trial where we're studying the efficacy of the treatment. That means we need to know if it's having any kind of effect in the direction that we think it is in small dosages anyway.

Once we say, we think it has an effect within a physiologic system, our next question is to see how effective it is within a larger sort of system. That's the phase two trial. For effectiveness we want to see within the context of a real treatment regimen, how is it participating, how is it re-improving quality of life, and reducing mortality, and having an impact on the cancer that we're working on.

At that stage, we go into a big safety trial. We expand the numbers, we know it's working, it's efficacious, we know it's effective within a clinical treatment, we take it into a phase three trial. This is where we're hammering out all the kinks. We want to be sure we know there are no side effects, no complications with other medications, that kind of thing before it gets rolled out into the entire public.

Kim: Got it, got it. Dr. Beckjord, let me bring you into the conversation. Can you explain how a patient becomes part of a clinical trial? What does that process look like?

Ellen: Sure, absolutely. Clinical trials always have eligibility criteria that can be related to the nature of the disease a person has, they can be related to other factors associated with the person like their age or their gender. There are lots of things that go into the eligibility criteria.

Meaning, are you someone who is eligible to be a part of this trial. Sometimes, there are even geographic restrictions. There are some types of trials that people can participate and even if the trial is centralized in a university or a healthcare facility that isn't where they live, but sometimes due to the nature of the trial which may involve a necessitation of in-person visits and the like, you need to live near where the trial is being conducted. That said, I think you're beginning to point to one of the barriers.

The National Institutes of Health and the government provide a wonderful resource clinical trials ".gov", where you can search for clinical trials related to any disease and filter that search by various parameters like geography to find clinical trials that are available for you. It's also often the case that an individual health care provider will introduce them to a trial that they're aware of that might be applicable to their particular disease.

Those are probably you know are ways that individuals can search themselves for clinical trials, but a lot of the time that information is brokered through the healthcare system. Then there are even companies or specific initiatives, and there are several of these, and some of them have been funded by the National Cancer Institute in particular through small business innovation research grants designed to help people find trials that may be applicable to them because that information is a very high value. We're learning more and more that consumers need additional support to navigate that information environment and find the trials that might be applicable to them.

Kim: Dr. Beckjord, are there clinical trials available for all types of cancer, all stages of cancer?

Ellen: I can't say with a hundred percent certainty that that's the case, but I wouldn't be surprised if there is very broad coverage. There are even trials that are focused exclusively on cancer prevention, so some trials you know, you're only eligible for them if you do not yet have cancer but may be at increased risk for it. There are you know many many many clinical trials that are ongoing and they certainly are not only focused on types of cancer that are either very prevalent or very rare. They're certainly not all focused on you know individuals with very advanced cancer. There is you know most likely... Just given the volume of trials, I'm not someone who knows sort of what all of them cover, but I wouldn't be surprised that if the answer to your question was yes, indeed. There are trials that cover all different types of cancer, all different stages of disease, and you know all sort of different ages, and both for men and women.

Kim: We're going to get to a little later in the show, we're going to talk a little bit about some of the barriers to participating in clinical trials and we're going to talk about some of the myths. Dr. Beckjord, it's my understanding that there is a pretty wide gap between the number of patients, cancer patients, who do participate in the trial versus the number of percentage of patients who would qualify to participate in the trial.

Ellen: Yes, that is true.

Kim: Great. Okay, we're going to break that down a little bit as we dive deeper into the show.

Dr. Hesse, can you tell us about the benefits of participating in a cancer clinical trial? I imagine there are benefits for patients, benefits for physicians and scientists, and frankly benefits for the cancer community at large.

Brad: Sure. Let's start with the patient's perspective because this is the question if they're having a conversation with their physician and they're considering a clinical trial. They might want to ask, "Well, what am I going to get at it personally," first. Then, "What can I give back to the larger communities," maybe a second or third.

One thing I recognize is that a clinical trial will offer high quality cancer care. The way a trial is executed, the patient is given the best standard of care possible. Then they're given, some group of people will be given the experimental approach. The experimental approach, we hope might even be better. They're at least going to get the best standard of care possible and maybe something that's better. If in fact, and this is a second benefit, the treatment is proven to work during the trial and they're receiving it, they're allowed to be among the first to benefit from that and they will continue on in most cases with that medication or that treatment regimen.

Another advantage I think from a patient's perspective is that we're confronted as patients often with a lot of treatment choices and that includes clinical trials. What's important I think at that stage is to really take an active role in that decision-making process and so knowing what kinds of opportunities and choices that are out there for clinical trial helps make a more informed decision I think with the person and the people that are surrounding them and caring for them.

The doctor, of course, is the next one to care for them and the hospital itself. The hospital is looking for the best treatment they can find possible for its patients, and the doctor is looking for the best treatments they can find possible for his patient, her patient. That's a benefit that the physician gets out of this, is that they're going to be at that cutting edge for what could be the next standard of care, and they're giving that to their patients right away.

Researchers, of course, researchers can only move forward and to understanding how these substances work within real physiologic systems that they're using people or cooperating with people to understand that, so that's the only way that science is going to go forward. That's how the community finally takes advantage of that in advances.

Kim: We've got just a minute until our first break here. Dr. Hesse, but just quickly, I've also heard patients say that they derive sort of an existential benefit from participating in trials because of the sort of altruistic motivation in that. Obviously, their hope is that this trial is going to help them and going to help them get cured or keep the disease at bay, but they also feel like they are participating in the science. They are participating in perhaps bringing better care to future patients. Have you sort of heard that piece of the discussion?

Brad: Yeah, absolutely. I think we're going to be able to talk about this a little bit later in our conversation. We even coined a term of data altruism where patients are saying, "Look. We want to be part of the scientific process. We want to give our data, so that others can benefit from that." We hear that a lot.

Kim: Yeah, yeah. We're going to take a quick break here on Frankly Speaking About Cancer. Don't go away. We're talking about increasing enrollment in cancer clinical trials.

As you've heard, it sort of start to go down this road. There's a lot of potential for patients to participate in clinical trials. There's a lot of benefit to that and frankly, there are a lot of myths that surround participation in trials. We're going to take a little bit of time on the show today to kind of bust some of those myths and really get the truth out there and the important facts out there about cancer clinical trials, and how participating in trials can benefit the patient and benefit the science and society as a whole.

This is Frankly Speaking About Cancer. I'm Kim Thiboldeaux and we're talking about clinical trials today. Don't go away. We're going to take a quick break. We'll be right back.

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You are listening to Frankly Speaking About Cancer with the Cancer Support Community. An inspirational program offering the resources you need to live a better life with cancer.

Now here's your host, Kim Thiboldeaux, President and CEO of the Cancer Support Community. 

Kim: Welcome back to Frankly Speaking About Cancer. I'm your host Kim Thiboldeaux.

Today's show is sponsored in part by Bristol-Myers Squibb, Novocure and Taiho Oncology. We're talking with Dr. Ellen Beckjord and Dr. Bradford Hesse about the vital importance of cancer clinical trials and what we can do to increase enrollment in trials which could lead to discovering better and more effective cancer treatments and cures.

I want to talk for a minute or two and ask both of you about some of the common myths that surround cancer clinical trials.

Dr. Hesse, I'll start with you. I know that one of the common myths that we hear from patients all the time is, "I don't want to get the placebo." Can you talk about placebo, particularly in the context of maybe explain what placebo is? Then talk about it in the context of cancer clinical trials.

Brad: Sure. The way that we used to do research, kind of in the early days when we had pills is that, we would come up with an ineffective comparison group, control group, and usually that was a sugar pill and that was referred to as a placebo.

This was happening 40-50 years ago, actually, before the institutional review boards came online in big way and said, "Wait a minute. Yeah, I understand you're going to get a big effect by comparing your particular medication with a sugar pill." There are already other medications that might be existing. You can't do that anymore with your patients. If you're going to be doing a clinical study, you've got to be sure that they have the best treatment available now and you can't give them a placebo.

It's a myth entirely. I'm glad for myth busting, that people would get a placebo. They're going to get the best treatment available, currently. We're hoping that the experimental drug will be even better.

Kim: Okay, I think that's a critical one. I think that folks, a lot of folks tell us they know what a clinical trial is. You know what? When we drill down, they do really don't know. They don't understand that you're not going to get a placebo in a cancer treatment trial. That's a critical point for us to drive home, I think on the show today.

Dr. Beckjord, some other myths that we hear and maybe you can clarify for us. A lot of folks say, "Well you only go on a clinical trial as a last-ditch effort when everything else has failed." True or false?

Ellen: False. The, the idea that you know clinical trials should only be used as the last resort is absolutely a mess there. I think that comes from the idea that one of the treatment potentials in a clinical trial is, quote unquote “Experimental.”

As Dr. Hesse mentioned, you know this would be a treatment that is known to be as good. There is reason to believe potentially better than the standard of care. It is certainly the case that it's absolutely appropriate to enroll in a clinical trial if you meet eligibility criteria, and the rest of the parameters of the trial are applicable to you. I mean, at any point in your treatment including when you're being treated with curative intent.

Kim: Again, I think another important point to drive home with our listeners; there are trials available at all different stages of disease. It's a question as you're diagnosed with cancer. You should ask your doctor, "Might there be a trial, that's right for me, that's available to me?" For all of the reasons that you just mentioned. Just a couple more doctor has it'll throw out. We hear patients say that, they feel like, "I don't want to go to trial because I'm going to be treated poorly. I'm going to be treated like a guinea pig or a lab rat." What do we know about the experience of patients in trials?

Brad: We understand that because trials are very controlled and they're going to be comparing against the very best care available currently, that, it's the exact opposite.

Rather than being treated with disrespect or as a lab rat or with substandard care. In fact, they're going to be treated quite well. They're going to be treated with the best possible care available. They're going to be doing it in a way that we know is high quality.

Kim: Dr. Hesse, let me ask you. Let's move in to what we know about, sort of enrolling in trials engagements. In trials, we know that there's a big gap between patients who do enroll in a trial versus patients who might be eligible to enroll in a trial.

The numbers I hear and you could correct me if we're off the mark here. About three to four percent of adult cancer patients participate in clinical trials. Data shows that potentially 25 to 30 percent or more of adult cancer patients would qualify to participate in a clinical trial. Why is enrollment lacking? What explains this gap?

Brad: Well, there are a few reasons that we've been studying. There's a wonderful little paper. It's available at the website of Memorial Sloan-Kettering. I just took a peek at as a matter of fact. They said that here are the concerns that they hear the most on Kettering.

They said, "One people do worry a little bit about side effects and safety, justifiably." One thing to recognize and I'll say it right now is that, every trial has a Data Safety Board and very strict provisions to protect the safety of every participant in a trial.

There are also some concerns about insurance. I might mention that that's also a bit of a myth. There's federal and state legislation that requires insurance companies cover many of these trials. We hear about inconvenience at trial locations. Sometimes this is a little bit too far away and people have a struggle to go. We'll talk about that a little bit later, possible solutions to that. I understand, that's a legitimate concern.

Then maybe some skepticism from people's part, just lack of awareness, some of the myths that we talked about earlier on and feeling like a guinea pig that you're kind of talking about. Those can be obstacles that we can remove with just better awareness, more talking about it, like you're doing on this show right now.

Kim: Yeah, so how to understand in this sort of researched context, how is this problem? How is this gap impacting the research process and our progress towards finding more effective treatments? Then potentially, even a cure. I've also read that less than one-third of all cancer clinical trials actually meet their recruitment goals. I mean, that's a dismal picture when were in this environment of sort of better treatments better technologies. To sort of advance the, you know, advance that the treatments and advance towards a cure. We're still seemed to be facing this gap. It must be having a huge impact on the research.

Brad: Yeah, you're exactly right and that's the big paradox I think is, we're right at a time now where we've accumulated enough technical knowledge, enough bio medical knowledge that we can move forward very quickly in advance, very quickly. The limiting rate, the limiting step, I think, has to do with participation in the research process in order for us to move forward. We really do need to figure out as a community on how to address that problem and get greater participation throughout the community, so that we can move science forward, more quickly. I think you mentioned it earlier on that there's not a treatment out there that hasn't been through clinical trials. We're going to have a long queue if we don't start participating.

Kim: Dr. Beckjord, let me let me ask you this. There's a lot of conversation you know in the healthcare world today about sort of big data and about sharing data and you know sort of other technologies that are being employed to kind of close the research gap. Just help us understand, sort of, as you know, as lay people, as consumers what are we talking about here. What's the data? What are the technologies that can help close this gap and move us to better treatments and potentially towards cures?

Ellen: With respect to big data in particular and ideas around data sharing, those are two and sometimes related but also different ideas. I'll address data sharing first, I think. The idea that if two different institutions are conducting a similar trial, perhaps testing two different agents or two different treatment approaches that you know wouldn't it to your point earlier about the lack of participation and trials and sort of our low relatively low numbers of people participating and them being a hindrance to the progress of research.

You know, another strategy in addition to getting more people to enroll in trials, is to increasing the degree to which we can learn from ongoing studies by combining data across institutions organizations who are studying comparable things in the service of advancing a building more evidence more quickly, There are some regulations around data sharing and you that that under certain circumstances when you've been received a grant from the federal government of a certain amount that you know, sharing your data or agreements to share your data or your findings are part of the stipulations of receiving that money.

There's definitely been a push around data sharing. It requires a certain degree of data standardization because you know it's hard to combine apples and oranges so to speak. If you're able to coordinate across the number of efforts, such that you're collecting data in the same way, so that after the study is over or during the study. Those data can be combined and the service of amplifying what you can learn and how quickly you can learn it. That's a real benefit of data sharing.

Big data is a term that is used to refer to a lot of different kinds of data, oftentimes genetic data or genomic data. These are, you know, where we have very large data sets that include, you know, a very large number of variables. Brad can probably speak to this better than I can so I'm going to stop in a moment and let him take over.

You know large volumes of data usually a lot of data on a lot of individuals sometimes collected in a standardized way. We also see the emergence of, quote unquote, big data being gathered through things like sensors that people are wearing. Just collect a lot of intensive longitudinal data or a lot of data on one person over a relatively long period of time. These data are being new.

They are new analytical methods that we're needing to apply to these data. They are kind of pushing the boundaries on data sharing but there's certainly a lot of reason to believe that these new types of data and the analytical techniques that are applied to them are another way that we are going to be able to advance and expedite what we can learn about cancer treatment. Sometimes in the context of clinical trials, but also sometimes in the context of just very basic research.

Brad, I don't know if you'd like to add to that.

Kim: Yeah, we've got about a minute until our next break here, but please Dr. Hesse, jump in.

Brad: You've mentioned earlier on that I had worked on a report for the president's cancer panel. This is a report that goes to the president of United States. It's entitled "Connected Health" and it makes the point that Ellen is bringing up right now. One way of accelerating our progress is by increasing the parallelism of which we collect data from a lot of patients at the same time, by using mobile technologies.

You can be more preemptive in some of our trials so that we tried early on in the process and we get biochemical assays using like a spit thermometer that kind of thing. By doing that, we can move more quickly, I think, towards discovering cure than we could 10, 15 years ago.

It's in this new area of connecting up our data strings that we're going to get more efficiency out of the trials that we have.

Kim: Great, great. Excellent. Great, great, great insight on that. I think it's important for for us to be having this conversation about the data piece you know as well as some of the front line questions that patients are being faced with around clinical trial enrollment. I'm confident that our listeners are really gaining a lot of good insight from the conversation.

This is Frankly Speaking About Cancer. We're talking about engagement in cancer clinical trials with two experts, Dr. Ellen Beckjord and Dr. Bradford Hesse.

We're going to take a quick break. Don't go away. We'll be right back.

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You're listening to Frankly Speaking About Cancer with the Cancer Support Community. An inspirational program offering the resources you need to live a better life with cancer.

Now here's your host Kim Thiboldeaux, President and CEO of the Cancer Support Community.

Kim: We're back with Frankly Speaking About Cancer. I'm your host Kim Thiboldeaux from the Cancer Support Community. Our show today is sponsored in part by Celgene Corporation, EMD Serono Inc. and the Takeda Oncology Company.

On this episode, we are discussing barriers to cancer clinical trial enrollment and how we can overcome these barriers? We’re joined by Dr. Ellen Beckjord and Dr. Bradford Hesse.

In our last segment we discussed some of the challenges facing recruitment for clinical trials. I just want to pivot a little bit and talk about what is being done to reverse the trend of low enrollment?

Dr. Beckjord, I want to start with you. I want to just drill down a little bit more on this idea of patient perception of clinical trials. How does perception impact enrollment? What can we do to change patient perception?

We talked a little bit about the myths and fine if we reiterate we may have folks just joining us now. We reiterate that some patients think you're going to get a placebo in a cancer treatment trial which you are not. Patients think you're maybe going to be treated poorly like a guinea pig or a lab rat. Let's talk a little bit, let's dive in on this sort of individual and societal perception of clinical trials and what we can do to kind of turn that around and create a more positive perception around trials?

Ellen: Sure. I think we should break perception down into two different parts. One is perception that happens because people actually become aware of trials and then sort of their perception or attitude about the trial once they've become aware of it. We really have significant barriers on both fronts and I think the reasons that their barriers are different.

With respect to just making sure that patients learn about trials that are available to them, one of the biggest barriers is simply a matter of time. Anyone who's gone through a cancer diagnosis knows that the time of diagnosis is often an incredibly hectic and overwhelming time. It's difficult to make room for anything that isn't felt to be non-essential. There are treatment plans that have to be made, sometimes there are the needs to schedule surgery and follow on imaging, etc.

I think both the patients and frankly the healthcare system are trying to do that in a very limited amount of time and we have a barrier related to how do you create the time and space in those clinical encounters to introduce the idea of a clinical trial and then have the conversations necessary to make sure that the patient is informed well enough to give consent to be a part of the trial. It's simply just not a standard part of the workflow around that initial time of diagnosis. There are likely some ways that we can change that by prompting the healthcare provider to have that conversation by putting it into the workflow that may happen within the electronic medical record, it may happen by having an agent.

This is the case in many cancer centers having a navigator or a healthcare provider who's specifically tasked with talking with patients about clinical trials so that it's not something that has to be added on to an already existing workload for a provider but there's a provider whose task is to simply have those kinds of conversations. We have to prioritize that we have to make time and space to have those conversations during a time that is often very jam-packed and overwhelming.

There's a survey that the National Cancer Institute conducts called, "The health information national trend survey." In 2014 there was a question on the survey about if you've ever been told about a clinical trial as part of your treatment for cancer for a respondent to the survey who has a history of cancer. Only 10 percent of the cancer survivors in the survey in 2014 said, yes. They'd been told about a clinical trial as a treatment option.

Now, there are two things to note there. One is that, we do know that the introduction of trials into treatment doesn't happen as often as we'd like it to. I would strongly suspect that 10% is also a function of the degree to which people remember that happening. Because during a time when you're emotionally overwhelmed and needing to be making a lot of decisions and the kinds of decisions that you've maybe never made before related to healthcare, it's just simply very overwhelming to remember every single thing that you were told about. Much less something like a clinical trial which we also know from the same time period in 2014, roughly 25% of Americans who responded to this survey said they've never even heard of a clinical trial.

Once we can overcome the barrier of awareness, that's where we then need to begin to tackle barriers related to misperceptions and myths about trials.

Again, I think this is in part a matter of time and information provision. How do we make sure that we go into those conversations either acknowledging that a clinical trial may be a very foreign idea for that individual, or if they do have an idea about a clinical trial perhaps those ideas are misinformed? So needing to be very deliberate about communicating and specific and clear ways with people about what it would mean to be a part of this trial? What are the things that could happen to you as a part of this trial? What the benefits are, what the risks are? That's what informed consent is about.

Again those things take time. I will say that and this is probably true for many of the folks who are listening to your show and also for Brad, when someone who is in my life a friend or a family member is diagnosed with cancer, and I'm often contacted because they know that I know a few things about this field. The first thing I always offer to do is to look for clinical trials that might be applicable to them. I know that that might not be something that's on their radar, that it's an important thing and that they may not have the time, space or where all to do that at that critical moment was. I don't simply think we have to prioritize it and make time for it.

Kim: Yes. That's great information, great information. Dr. Hesse, about a year ago, and it was big news. The White House announced the Cancer Moonshot initiative to double the progress towards a cure for cancer essentially achieved 10 years of progress in five years’ time.

Talk to our listeners about what role cancer clinical trials will play in ensuring the Cancer Moonshot's success?

Brad: Wonderful. I have to say that the Moonshot is still good news. As a result of passing the 21st Century Cures Act in the late part of December, the Beau Biden Act was included and part of that's where much of the impetus for the Moonshot activities will be taking place and funded.

One of the first actions that followed out from the vice-president taking on this task was a group of people came together in a blue-ribbon panel to come up with a series of recommendations on what we needed to do to accelerate get done in five years it would take 10 otherwise. They began with clinical trials. They said we have to improve the dismal state of clinical trial of accrual and we have to improve the way that we analyze data from these trials, we get greater efficiencies. It became the leading force for all of this.

From that, came a series of recommendations. There were 10 recommendations. The very first one, again leading off the list, was to form a network for paper direct patient engagement. This is interesting because it changes the paradigm very much in line with the way that Ellen and others have been talking about. They seem they talking with it so far. We recognize that it's difficult to shove a single conversation late in the game in a cancer patient’s treatment to say there's a clinical trial available. What the patient network is going to do, it's going to recruit people early on, well before they would even be eligible for a clinical trial. It would record molecular information about their tumor, put that into a registry and pre-register them for clinical trials that pop-up related to their tumors characteristics at the time possible. The point here is that we're going to make a platform where patients who tell us they do want to get engaged more generally in research because they have that sense of community and altruism, get an opportunity to that early on in the process.

Kim: Is there anything our listeners can do at home to ensure the success of the Cancer Moonshot initiative?

Brad: There are three obstacles to the initiative kind of unfolding and working well as I see it. One and most important one is that, we somehow as a nation lose our will to make this happen and to pick up the mantle and run with it and accept it and push it. This is a place we're just being very active and advocating for this emphasis on what we can do to accelerate now treatment and cancer all listeners can be involved in that and should be involved in that and bring that up and through word of mouth.

Another is a place where we might render problems is if we fail to share data and that starts with the patient. When a doctor has a conversation about getting involved in research, if your listeners can first off engage in that conversation and learn more about it as a process and say, "Yes, here's what I am willing to share, I need protections, but I'm willing to share that." That's going to help accelerate this process as well.

Kim: Great, great advice. Dr. Beckjord we've got a couple minutes until our next break here.

One of the things we hear a lot are concerns around access to clinical trials. We know that a lot of trials are happening in the big academic centers, fewer trials available in community oncology settings where most cancer patients are treated. We also hear things from patients about, "Look, you know maybe my insurance company's going to cover the cost of the trial but, who's going to cover the cost of my daycare or my transportation? If I don't go to work I don't get paid." Some of these are sort of social and emotional and practical barriers that patients face. What are we trying to do to overcome some of these access challenges?

Ellen: Sure, which are very important? I would say that the NIH website is a great place to start because it gives the patient the opportunities to search for trials all over the country which then takes away the barrier of possibly only being exposed to ones that are happening at their cancer care setting.

That doesn't address the problem of let's say you find a trial but it’s a hundred miles away and you'd like to participate in it. Then there are other sorts of supports like of the Patient Advocate Foundation or the Livestrong Foundation that have services and supports in place to help people deal with those practical concerns associated with the cancer diagnosis to help overcome some of those barriers to participation but there are very real barriers and it's important for patients to seek out and ask for an advocate for themselves to get help to overcome them.

Kim: Yes. I know. We certainly hope that part of the Moonshot will be to address greater availability of clinical trials in the community setting and in more communities around the country because you know we talk about, "Oh, is the trials 50 miles away, 100 miles away." A lot of times these trials are a plane ride away which certainly has a lot of real practical and financial ramifications for patients who are seeking out a trial.

This is Frankly Speaking About Cancer. We're talking today about cancer clinical trials. We're talking about what trials are, we've covered that. What some of the challenges are, the access barriers and really what needs to happen as it relates to clinical trials to really accelerate towards better treatments, if we're to accelerate towards secure.

We've got more to talk about here. We're going to take a quick break. Please don't go away, we'll be right back.

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You're listening to Frankly Speaking About Cancer with the Cancer Support Community. An inspirational program offering the resources you need to live a better life with cancer.

Now here's your host Kim Thiboldeaux, President and CEO of the Cancer Support Community.

Kim: We're back with Frankly Speaking About Cancer. I'm your host Kim Thiboldeaux. Today's show has been sponsored in part by Lilly Oncology and Insight Corporation. We're closing out our show talking more about the need to increase clinical trial enrollment. We're with Dr. Ellen Beckjord and Dr. Bradford Hesse.

As we get towards the end of the show and the end of the conversation, you guys are kind of in the thick of this work and in the thick of this conversation. I really want to ask you know each of you what you sort of expect to see and what you hope to see in the cancer clinical trial environment over the next five years? Dr. Beckjord, I'll start with you. What do you think we're going to see and what's the stretch goal, what do you hope we're going to see?

Ellen: I hope that we'll see progress towards increased participation in trials and increased data sharing across organizations that are conducting trials, so that we can really take two separate and related approaches to expediting the degree to which we can grow the evidence we need to make substantial progress towards advancing treatment and achieving cure for as many cancers as possible.

Kim: Yes. Dr. Hesse, how about you?

Brad: I'm hoping that in the next five years we see a change in the way that people think about clinical trials. Recognize what a partnership opportunities this is and how we can contribute information to the research enterprise early in the process. Destroy some of these myths that we're talking about is we have a national conversation, about exactly how important that is. Then if we do that I think just like we've seen in a lot of other areas of this economy, certain things start taking off dramatically and I think that's going to see now an escalation of people wanting to get involved in clamoring to involved in clinical trials.

Kim: Dr. Beckjord I want to talk a little bit about, just for a minute about the importance of social and emotional support and other interventions and trial participation. At the Cancer Support Community we did a study. We studied an intervention to help patients with treatment decision-making. We sort of did some myth-busting around clinical trials in each of those counseling sessions.

As a result once patients really were educated and took a moment to understand what clinical trials really were, then actually we had in the study 9% of patients enroll in a clinical trial from one 45 minute counseling session. That's three times the national average just to remind our listeners. What is the importance of that of social and emotional support? You talked about the doctor visit, it's so pressing, there's so much that has to be communicated. If we could slow down for a minute and maybe understand patients concerns and what their barriers are, do you think that could really make a difference in enrollment?

Ellen: Absolutely! I think that it could make a huge difference because not only does that type of conversation help to address some of the concerns that people may have about trial participation. Brad and I have done some research in the past showing that one of the most challenging things or one of the many challenging things about a cancer diagnosis is that there's often a lot of emotional distress and feeling pretty emotionally overwhelmed at the time of diagnosis. It's also a time when a lot of decisions need to be made. We know from a psychological and cognitive perspective, we are sort of least equipped to make decisions and process information when we are emotionally overwhelmed.

I think that there's two ways those kinds of conversations can serve to advance the agenda on clinical trials. One is simply creating the time and space to have the conversation to relay what is relatively complex information to someone in a way that they can understand and digest, but also to begin to address what we know are a lot of the emotional challenges that naturally accompany a diagnosis of cancer. By addressing those you separately create an environment in which an individual is better equipped to hear, retain, process and make use of critical information related to their care. Not just related to clinical trials but to their care overall.

Kim: Yes, great input. As we get to the close of the show I just want to ask each of you if we've got somebody listening today, maybe they've just been diagnosed with cancer, maybe they've heard about clinical trials, maybe they haven't. I'm going to start with you Dr. Hesse, what advice, what tips do you have for somebody who's just been diagnosed as it relates to a clinical trial. What questions should they be asking? What steps should they be taking as they sort of navigate a diagnosis of cancer?

Brad: There is a good colleague of ours, Jessie Gruman who one time said that once she was diagnosed with cancer she became inadvertently activated. She said that was the most engaging time of her life. She had no choice but to just dig in and figure out what was going on. I think as patients do that as they try to make sense of what this new world is that they're rendering, to include a search for clinical trials, Ellen was kind of alluding to that earlier on. That it's one of the first things she does is support when someone calls her. They just think about these trials.

I would recognize first that it's a natural phase to have questions, have doubts, have some insecurities about what this means. It's a process of understanding what it can do for you in a treatment setting, the advantages that can provide not just for you but for others in the community at large. Then have more conversations with people just to make sense of all this.

Kim: Yes, great advice Dr Hesse. Dr. Beckjord, what would you like to add?

Ellen: I'd like to pick up on the last point that Brad made and I agree with what he just said. I think that it's about enlisting as many people as you can to help you gather and process information as it relates the clinical trials but just to cancer generally. Most people hopefully have not been diagnosed with cancer before when they receive a diagnosis. Few of us are experts in going on that journey though people like Jessie Gruman who Brad mentioned, who had been diagnosed with cancer multiple times develop that kind of expertise even if it's not expertise that they wanted.

For most of us it's a very unfamiliar journey. I would encourage people diagnosed with cancers to recognize that no question that they have is a bad question to ask. Ask every question you have. Force the conversation to slow down to a pace that you find acceptable. Force the whole process to slow down until you feel like you have the information you need to make what are very critical decisions. Enlist the help of friends, family, and other cancer survivors. If you can connect with them they may be people you already know where the place where you're receiving treatment likely has a network of individuals who've been treated previously that are willing to provide peer support.

Other survivors always have the best advice for newly diagnosed patients in my experience so connect with those people. Bring a note-taker to your appointments, record what is set at the appointments on your smartphone if you have one. Just document, gather information and then recognize that it is absolutely appropriate to give yourself the time and space to process that information even when it feels like decisions have to be made quickly. Never be afraid to say I need things to slow down and I need more information before I can make a decision.

Kim: Great, great advice Dr. Beckjord. I want to thank both of you for joining the show today Dr. Beckjord and Dr. Hesse. It's been a great conversation. We've covered a lot of ground obviously more to cover and more to share which is why we're making this particular topic a series on Frankly Speaking About Cancer. We're going to be doing several shows on cancer clinical trials and the importance of awareness and education and the importance of accelerating enrollment in cancer clinical trials.

You both mentioned Jessie Gruman who was also a friend of ours and a friend of our organization. I think it might be fitting to dedicate the show today to Jessie Gruman. She was a great advocate and a great friend and just a terrific human being and we all learned a great deal from Jessie. We would like to do that and dedicate this show to Jessie today.

I want to thank our listeners for joining us for Frankly Speaking About Cancer. I'm your host Kim Thiboldeaux from the Cancer Support Community. I also want to let our listeners know that we had a new educational program about clinical trials, Frankly Speaking About Cancer clinical trials. There are a host of resources at our website at Again that's Check at our website and call us on help line, that number is 888-793-9355. You can speak to one of our counselors any day of the week. Give us a call at 888-793-9355. We want all of our listeners today to know that you do not have to face cancer alone. I'm Kim Thiboldeaux. This is Frankly Speaking About Cancer. Until next time. Be well. Do well. Live well.

Thank you for joining us for Frankly Speaking About Cancer with your host Kim Thiboldeaux. We're here for you every Tuesday afternoon at 1:00 P.M. Pacific Time and 4:00 P.M. Eastern Time on The Voice America Health and Wellness Network. In the meantime stay connected online at That's

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