Tom Rhoads (00:02):
Welcome to “People Always, Patients Sometimes.” I’m Tom Rhoads, CEO of Spencer health solutions. Our podcast is focused on many of the thought leaders and executives that are calling for a change in how we design and run clinical trials. This episode is the second in a series of interviews with patient advocates, influencers, and organizations dedicated to putting the focus in healthcare where it belongs, on the patient. Our mission at Spencer health solutions is to ensure that patients are at the center of everything we do. So we are pleased to introduce Carly Flumer to the podcast. She was a young adult survivor of thyroid cancer and an author and a health data scientist. I know you will enjoy her conversation with Janet Kennedy on “People Always, Patients Sometimes.”
Janet Kennedy (00:51):
The people always patients sometimes podcast is about the change agents in healthcare who are focused on patient experience, patient engagement, or disrupting the process of clinical trials to become more patient centric. Our guest today is Carly Flumer. She’s a patient advocate, a data geek, a change agent, and one of Spencer’s voices of disruption. If you have not read our ebook yet, in which Carly’s comments are featured, look for a link in the show note. Welcome to “People Always, Patients Sometimes”, Carly!
Carly Flumer (01:22):
Hi, thank you so much for having me.
Janet Kennedy (01:25):
I have been. So looking forward to talking to you, because while you provided a great insight to our voices of disruption ebook, we really didn’t have a chance to have a conversation at the time. So now I’d like to get to know more about you.
Carly Flumer (01:40):
Wonderful. What questions do you have?
Janet Kennedy (01:43):
Let’s start with, we invited you here because you have a very active patient advocacy focus in your life, and it is not everything you do, but it is an important part of who you are and what motivates you. So can you tell me a little bit about how that all came about?
Carly Flumer (02:01):
Sure. I was diagnosed with thyroid cancer in 2017 when I was 27 years old. So I was considered an adolescent and young adults or an AYA patient. And those are very few and far between, it feels like to me, in terms of where age lies on the cancer spectrum I feel like there are a lot of younger patients and then there are, are a lot of older patients, but we really don’t hear much about AYA’s, which are considered between 18 and 39. And so I wanted to get my story out there and I figured out the best way to do that was to become a patient advocate and to write, which is one of my passions. And so I have been writing about my story and my perspectives in healthcare from a patient perspective, and then from a perspective of somebody who works in healthcare. So it’s kind of, two-fold where I can share it from in front of the doctor while also behind the scenes. And so I think if that gives me a unique look into all of the nuances of healthcare and how it can be changed to make better out patient outcomes.
Janet Kennedy (03:11):
How long was your cancer journey and where are you today?
Carly Flumer (03:15):
So I was diagnosed the second week of January of that year. And I was in treatment until the end of November of that year. So almost a full year. I am in remission at the moment. The magical words that every cancer patients want to hear is no evidence of disease. I have not reached that status and I may never reach that status, but I was told that I was in remission and I’m checked every so often to make sure that I remain in remission and I don’t relapse.
Janet Kennedy (03:52):
Well, I think that’s one of the huge challenges with cancer is while you might beat it, that’s not necessarily a forever thing.
Carly Flumer (04:02):
Exactly. It’s something that is always on the mind of every cancer patient, because it’s so different for everybody. You hear that no patient is the same, but also no cancer is the same either. Whether it’s considered the good cancer, which is what thyroid cancer is considered, or whether it’s a cancer, that’s more serious, but it’s an ongoing thing. It’s something that we all think about in the back of our minds. So just something to be cognizant about always,
Janet Kennedy (04:34):
And is getting thyroid cancer at such a young age, pretty unusual?
Carly Flumer (04:39):
I would say yes, yes and no. It is on the rise in terms of how many cases are discovered. But I have found, I guess, through my research and through my advocacy work, that it is more common among females. And I would say the majority of the women who I have found in support groups, they’re in a wide age range. So from the early teens up to, I would say, you know, 60’s – 70’s, we are all over the place in terms of age. But the majority of patients I have found are women.
Janet Kennedy (05:12):
Let me ask you something about your advocacy as every cancer might be different. I imagine every patient advocate would give themselves a unique job description. So what exactly does your advocacy encompass?
Carly Flumer (05:27):
From my own perspective, my goals are to impact health literacy, patient education, oncology research, and patient provider communication, to create a better health outcomes in the oncology space. That’s what my work, that’s what my writing involves around those specific topics. But then my job, I wouldn’t say it’s necessarily advocacy work, but it’s certainly within the oncology space is where I receive protocols from cancer centers across the United States for clinical trials. And it’s written in this language that no patient could understand. What I do is I translate that information into language that patients can understand. And so that information goes onto website clinicaltrials.gov, which is where patients go to find clinical trials. Should they be interested in enrolling? And so it does kind of encompass that advocacy piece, where I am making that language clearer for patients in order for them to make the best health decisions for themselves. But it’s more on the scientific ground, more so than I would say most advocacy jobs are.
Janet Kennedy (06:44):
So this is something that’s a higher level information than webMD per se, but also making that scientific language very accessible.
Carly Flumer (06:53):
Janet Kennedy (06:54):
So how did you end up writing for clinical trials.gov?
Carly Flumer (06:59):
Well, the way our process works is we receive the protocol and we have a program that we use for our job and we abstract certain parts of the protocol that the patient is going to be most interested in, such as what are the objectives of the trial, meaning what are the researchers looking to do? What is going to be happening? What type of treatment are you going to be receiving? Whether it be chemotherapy, immunotherapy, radiation therapy, what have you, and for how long, what are the outcomes? What are the researchers looking to gain from this experience and what are they looking for patients to experiences, outcomes, including quality of life, survival, things like that. Eligibility of course, is a huge one to make sure that you are eligible to enroll and then things such as biomarkers, which are confusing at first to understand and I still get confused by them sometimes. But those are really key and understanding how a cancer can progress or how our cancer is found. But that’s another topic with genomics. So yeah, that’s the type of information that I am looking for in these protocols in order to translate that for, for patients so that they can understand what these clinical trials are going to be about. And if they want to enroll this as the information that they need to know in order to participate.
Janet Kennedy (08:29):
And this is through your work as a scientific data analyst for the National Cancer Institute?
Carly Flumer (08:35):
That’s correct. So I contract with a company outside of the government and we work with the NCI and then these clinical trial protocols are coming from cancer centers across the United States.
Janet Kennedy (08:49):
You have experience with a clinical trial, do you not?
Carly Flumer (08:53):
I do. I feel like thyroid cancer is very rare in terms of clinical trials. I very rarely see them in my work and I’m not sure if it’s because thyroid cancer has such a great survival rate, but there are variants of thyroid cancer that are more serious, such as medullary, which are the trials mainly revolve around that type. The trial that I participated in was a quality of life trial. And those, I feel like are so important. We see a lot of trials that are focused on treatment and prevention, but then those trials that focus on quality of life and how patients really are doing, whether they’re in treatment or after treatment are so important. This one focused on the quality of life of thyroid cancer patients, which I loved because thyroid cancer is considered the good cancer, you don’t really consider what can happen with patients who live without a thyroid. And I didn’t know what a thyroid was when I was diagnosed with this type of cancer and, and, you know, any bodily function that you can think of the, I feel like the thyroid has a part in playing. And so living without one has really impacted my quality of life in ways that I wouldn’t have thought of and ways that were not really described to me when I was diagnosed. And so really focusing on the, on the quality of life of these patients with this type of cancer, I thought it was really important to open the eyes of researchers and pharma and other advocates as to what living with thyroid cancer is really like, as opposed to what the media or, or other organizations or other doctors have termed it as they’ve termed it as the cancer you would want to get if you were diagnosed. And that is absolutely not true. And so I really appreciated the trial that I was a part of.
Janet Kennedy (10:47):
I think it’s insane that somebody would even use the two words good and cancer in the same phrase. It’s an oxymoron that makes no sense whatsoever.
Carly Flumer (10:56):
Janet Kennedy (10:58):
What, what exactly were they testing? Were you getting surveys on just how you felt? Was this anything related to a drug specifically, or was it more about surveys and feedback about how your daily life was going?
Carly Flumer (11:12):
So it was mainly a questionnaire about how daily life was going, the symptoms or the side effects that I experienced. I feel like I have not felt them, or I didn’t feel them until after my thyroid was gone because when I was diagnosed, I didn’t have any symptoms at the time. And the biomarker and the lab levels that are measured for thyroid were completely normal for me. And so now without a thyroid, I am feeling more tired. My temperature, my body temperature fluctuates a lot. My mood is altered, hair loss. So different things like that, that I wouldn’t thought about have started happening as a result. And so I don’t think that those are really talked about when a patient is diagnosed, you know, because the majority of treatments for thyroid cancer is removal. And then for some patients who have, metastases including myself as a form of oral radiation, I feel like that encompasses the majority of treatments. And so it feels kind of like it’s a one and done thing as opposed to other cancers where they go through chemotherapy and radiation therapy, which may have significantly more harsher side effects. And so when you think about it, outsiders may think, Oh, well, you know, they just had a surgery or quality of life. Must’ve not been too impacted, but when you’re really losing a small gland, a small organ that helps you function on a daily basis, it really does impact how you live. And so I don’t have a thyroid. And so I take a medication to replace those hormones that I’ve lost. However, the medication dosage, which is prescribed by my endocrinologist is based on a bunch of different factors. So it’s based on my lab values. And it’s also based on how I feel during the past few months or so, it’s kind of strange to have a dosage based on that kind of information. It’s kind of like a playing with numbers game. I was told that, you know, when the beginning, when they choose the specific dose of what patients mainly take is called Synthroid, when they choose that dosage, when you first come out of treatment, it’s really a guess based on your lifestyle, your gender, your age, your weight. And then it’s just an up and down system based on how your lab results go over time and how you’re feeling over time. So it can take many years to find the dose that’s right for the specific patient. And I don’t think most people realize that I’ve been on the same dose for a while now, but that could change at any time, which is why I am checked all the time to get back to your original question. I think focusing on how patients are doing after this type of diagnosis is, is very important because you don’t realize how much cancer can impact you, even if the treatment seems simple.
Janet Kennedy (14:32):
Absolutely. I mean, you’ve been impacted for the rest of your life. This is something that was part of your daily regimen that you have to deal with. One of the things I hear from patients who have participated in clinical trials or a concern about participating is they’ve kind of feel like a number, that’s great, I’m here, but I don’t ever get any feedback about how that turned out was my participation valuable. What if it didn’t work? So do you know what happened to the feedback that you gave them in this clinical trial and how it was applied, or are you also in the dark?
Carly Flumer (15:10):
I am also in the dark with my work. I received the consent forms as well, which are given to patients. And that’s more of a lay friendly language based protocol, if you will. That, it’s basically what I am doing with my work, but it’s physically handed to patients as a form, if you will, which they have to sign saying, I understand what I’m going to be going through with this trial. So the consent forms, I think the majority of them do say, well, I know the results of my research and the majority of them do say no. And I do think that is very frustrating to know whether or not this has affected you, especially if this is a more intense trial, you want to know if something worked or not, or if something was found, because I mean, you are not just a number in this trial. This is your life that’s being impacted. And so I think patients do have the right to know what happened in this trial. How did my role in it play a part and creating a greater impact for future patients?
Janet Kennedy (16:19):
Absolutely because even a trial that does not result in a successful drug launch still has a lot of important learnings. And generally speaking, it tends not to be so much about the drug efficacy. It’s about getting enough patients engaged in the trial for a long enough time that they get truly valuable statistical data.
Carly Flumer (16:40):
Right. The other thing about that is that I feel like health literacy is such an important aspect in clinical trials as well. And I think one of the reasons why clinical trial enrollment is so low nowadays is because patients are not understanding the information that is given to them. And if they don’t understand it, then they’re not going to want to enroll. And then if these clinical trials, they cost millions of dollars to put on, they end up falling through because they can’t get patients. And clinical trials are the way to new drug development and new drug development is how we create better treatments, which is how we create better outcomes. So it’s like a rolling ball of catastrophes. If you will, that if something doesn’t happen in the beginning, then it just keeps falling through towards the very end where you really cannot find treatments that will create these better outcomes for patients. If you can’t get the patients in the door in the first place. And I think one of the nuances that is impacting that is health literacy and just clinical trials being available in general. I feel like most patients don’t have, or they don’t hear clinical trials as an option. Patients are, I feel like they’re given very limited choices when it comes to treatment. But my view is that patients should be given options based on a variety of factors, including their culture, their lifestyle, their financing, because clinical trials can cost a lot of money and just taking into account who the patient really is as a person, rather than seeing them as just a plus one. And that clinical trial, you really have to take into account who they are and their life, because this is their life that they’re entering into a trial. It’s you don’t really hear about how patients are feeling as they go through a trial. You just hear about the results sometimes, maybe even not, not even that. And so I would be really interested in hearing other patients and how they experienced clinical trials and what it was like for them. And how did, how do they even get started? How did they learn about it? Do they hear about it from a doctor? Did they have to be their own advocate and research it for themselves? Were they able to understand the language and what made them want to enroll things like that?
Janet Kennedy (19:17):
My next question actually pulls that thought together and the situation that we’re dealing with right now, which of course is, is COVID-19, and we will be for awhile. As a patient advocate, you are very savvy in social media, you’ve got your ear to the ground and you’re hearing a lot of things. And I have been hearing mixed messages about COVID’s response to the awareness of clinical trials. One thing that if there is a good side to COVID, it has been making people aware of the disparity in communities of color or chronic disease and how they’re not involved in clinical trials. I think it has raised the opportunity for people to be more aware that they could be participating in clinical trials. Certainly people who have experienced COVID and are providing plasma. So the awareness level to me feels very high. And initially I think there was research that said people were more interested in participating in a clinical trial, but then just a few weeks ago, I saw another survey that said, Nope, no, they were concerned. So your ear to the ground, what are you hearing from the patient communities? Or are you already talking to folks who are pretty much on the advocate scale so they would be engaged anyway?
Carly Flumer (20:35):
Well, in my work, I have seen many clinical trials that are COVID related come through, and I cannot remember if they were specifically focused on people with health disparities, but I do think that that is incredibly true and important. I think COVID has opened up everybody’s eyes into the downfalls of healthcare that need to be worked on including health disparities, where people in rural areas have a harder time getting testing, or they have a harder time finding clinical trials because they don’t live near a hospital. And how there are populations such as the African-American community who are affected more because of COVID-19. I feel like that could be the same with cancer it’s just talked about more. I think COVID has really opened the healthcare’s eyes as if it were a person too, I guess, just everything that is wrong with healthcare and how it can be fixed because healthcare is an ongoing process. It’s something that will never end and that’s something that can always be improved, but I think COVID has really amped it up. And it’s really forcing all aspects of healthcare to really focus on what can we do to make patients better, I guess, at an increased rate, but also focusing on the patient outcomes as well.
Janet Kennedy (22:06):
I think that’s a thoughtful and excellent answer. And I hope as well that we are going to see the tide turn from the standpoint of supporting more communities that are disadvantaged and not getting involved in clinical trials, as well as just raising awareness of it. And I think that also goes back to your point about the importance of health literacy and plain language in what we’re trying to share with people. Yes, exactly. Well, I would like to thank you very much for being with me today and to everyone listening. Thank you for hearing this fascinating interview with Carly Flumer on the “People Always, Patients Sometimes” podcast. We look forward to hearing your thoughts about the episode. You can tweet us @Spencerhealth, or just send me an email. firstname.lastname@example.org. Carly, thanks for being here today.
Carly Flumer (22:57):
Thank you so much. It was a blast.
Janet M. Kennedy is a healthcare marketing and social media professional. Janet is the Senior Digital Brand Manager for Spencer Health Solutions and hosts multiple podcasts including Get Social Health and People Always, Patients Sometimes. She is a member of the External Advisory Board of the Mayo Clinic Social Media Network.