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Cancer Moonshot: Where Does Psycho-Oncology Fit In?

By Danielle Derbenti

On April 6, 2022, Blue Note Therapeutics Patient Advisor, and host of the podcast Man Up to Cancer, Trevor Maxwell was joined by clinical experts from Massachusetts General Hospital, Dr. Areej El-Jawahri and Dr. Joseph Greer, and Blue Note Patient Advisor, and host of Cancer Convos with Grace B., Grace Charrier to discuss the impact the Cancer Moonshot may have on psychosocial cancer care.

Cancer Moonshot: Where Does Psycho-Oncology Fit In?

Cancer Moonshot Expert Panel Discussion

View a video recording of the panel or read the transcript below.

This transcript has been edited for clarity and accuracy.

TREVOR MAXWELL: Thanks, everyone for joining us today for our expert panel discussion presented by Blue Note Therapeutics. The question that we’re going to be diving into today is Cancer Moonshot: Where Does Psycho-Oncology Fit In? And we are excited to have some of the field’s leading experts in psycho-oncology with us today. Briefly, for anyone who’s new to this topic, psycho-oncology is simply the care for the emotional and social well-being of people impacted by cancer, like myself. So, my name is Trevor Maxwell. I am a Stage IV colon cancer survivor and the founder of Man Up to Cancer. For the last two years, I’ve been a patient advisor for Blue Note Therapeutics and I’m proud to be part of their team. As you can see, I’m wearing my coveted, and hard to come by, Blue Note Therapeutics hat; we need to get on the team to get a merch store open for those of you who are going to want these, for sure. So now, I’m going to introduce our guests in a second, but first a few housekeeping notes. Participants are on mute so just the panelists are going to be speaking, but please submit your questions. There’s a Q&A feature in Zoom. Please use that to submit your questions. We are going to try to get to all of the questions today, or afterward we will follow up with you if we can’t get to your question today. So now on to the stars of our show. I have the honor of introducing them; Actually, I’m going to ask them to introduce themselves starting with Dr. Areej El-Jawahri.

DR. AREEJ EL-JAWAHRI: Good afternoon, everyone. My name is Areej El-Jawahri. I’m one of the oncologists at Mass General Hospital in Boston. I specialize in caring for patients with blood cancers and those undergoing intensive treatments like stem cell transplant and adaptive cellular therapy. And my research is focused on supporting these patients and their caregivers, so developing and testing supportive and psychosocial interventions to help these patients and their families across the continuum of illness. It’s nice to be here. 

TREVOR MAXWELL: Thank you so much. And we’re gonna go to Grace Charrier next. 

GRACE CHARRIER: Thank you for having me. My name is Grace Charrier and I am a Stage III triple-negative breast cancer survivor, a global patient leader, involved in several collaborative efforts across cancer and health literacy information, also enabling cancer legislations to be passed with federal and state lawmakers. I’m also serving on several patient advisory boards. The opportunity to share my story is very important to me because I want to give that one patient some hope and positivity in facing their cancer diagnosis. My social channels enable me to be a valuable resource for these people who are like me who have walked in their shoes and they’re walking in my shoes. And once again, I am so honored and very grateful for the opportunity that Blue Note Therapeutics has given me as one of their patient advisors to come on board and share their laudable mission of trying to see that cancer patients and survivors are given solace via digital therapeutics. Thank you ever so much.

TREVOR MAXWELL: Thank you, Grace. Awesome. And next, we’re going to go to Dr. Joseph Greer.

DR. JOSEPH GREER: Thanks, Trevor. Hi, everyone. I’m Joe Greer. I’m a clinical psychologist at Massachusetts General Hospital. I work very closely with Dr. El-Jawahri. Together, we co-direct a cancer outcomes research in education program where we do a lot of intervention, development, and testing. My particular area of focus is on the adaptation and tailoring of cognitive behavioral interventions for patients with cancer, largely those who have advanced cancer, to treat symptoms such as anxiety, breathlessness, and also to help improve treatment adherence. We also work very closely on developing novel models of care for integrating palliative care in the course of illness for patients with advanced cancer. And I’ll be sharing about that a bit more later today. And I have to say much of this is informed by my clinical practice as a psychologist meeting with patients and families. So I’m very happy to be here and look forward to the discussion.

TREVOR MAXWELL: Terrific, thank you so much. So let’s just jump right into it. So Cancer Moonshot. Our first question, President Biden recently announced plans to reignite the Cancer Moonshot with two goals: reducing the cancer death rate by 50% by 2047, and improving the experience of people and their families living with and surviving cancer. For our listeners, we’re going to put you in the hot seat. How would each of you explain this initiative in 30 seconds? And let’s start with Dr. El-Jawahri? 

DR. AREEJ EL-JAWAHRI: Well, first of all, I think it’s an incredible initiative that really is very much needed in the field. Cancer is the leading cause of death in our population, certainly something that affects many of us and many of us will have stories to tell of family members, loved ones, and our own stories about cancer. So I’m very excited about the potential of investment, both in the treatment of cancer where there are a lot of innovative treatments that are coming up. But also, I would say these treatments come with side effects and a cost for patients and families. And one of the things that’s really incredible about this initiative is the focus on really improving the lived experience of patients with cancer and those who survived cancer. And so we have to remember that there are side effects, late effects that these patients experience, both at the time of diagnosis during therapy, and into the survivorship phase. And when we think about improving the lived experience of these patients and their families, we need to really think about the entire continuum of the illness. And what I appreciate about this initiative is that the emphasis is on the idea that we need to provide holistic care for patients and their families throughout the entire continuum of the cancer journey.

TREVOR MAXWELL: Thank you so much. We’re giving latitude because that was a darn good answer. So your minute is accepted. All right, here we go, Grace; you’re up next.

GRACE CHARRIER: Thank you so much. I would say that just as ambitious as it is, it is a pivotal step forward towards preventing our future generations from facing this terrible disease that we’ve lived with and are still going through it. Now that we’re in the global age of science and research, I truly believe that this is an opportunity for increased funding for actually finding a cure. If we could find that cure, then all the nitty gritty about costs for prevention and accessibility would have been minimized. But until then, I do think that prevention and accessibility to multi-cancer screenings, actually not just one cancer, and most importantly, psychosocial support for those impacted cannot be underscored enough. And honestly, it is really comforting to know that all these are on the radar. Thank you so much.

TREVOR MAXWELL: Thank you, Grace. And Dr. Greer, how would you explain the Moonshot Initiative?

DR. JOSEPH GREER: Oh, well, like my co-panelists, I’m extremely excited about this. When the moonshot was initiated back in 2016, the focus was understandably on early detection, prevention, and novel treatments. And obviously, we want to continue with great investment in those directions as we move towards a cure. But what’s also becoming clear is that even in the 15 years I’ve been doing this work people with advanced diseases are just living longer and longer and longer with novel treatments and to live with cancer affects the whole human. And my hope is that there will now be similar investments around those aspects: the psychosocial support, how to help people on the spiritual level, the functional level as they manage new role negotiations, as well as the way that the ripple effects this has in their families. So I think we’re primed in psycho-oncology to make great advancements in that arena.

TREVOR MAXWELL: All right, that’s a great way to set the table. So thank you all. Let’s move on to focus on the second goal that I mentioned in that first question, which is improving the experience of people living with and surviving cancer. What does it mean by experience? And why is that important for patients? And we’re going to go to one of my favorite fellow patients, Grace, to start out with this one.

GRACE CHARRIER: Thank you so much, Trevor. What exactly is the patient experience? Yeah, everybody always asks that question; we talk about that all the time. What it is, simply put, even though it’s not that simple to achieve, is actually the onset. When the diagnosis is given to you, your journey starts from there until survivorship. Now, I won’t even start talking about survivorship now because that’s a whole different ball game. But the patient experience is actually known to be either positive or negative. And there’s evidence to show that the patient experience, a better one leads to positive outcomes. Now, what actually are the three common denominators that involve the patient experience? I would actually say emotional, physical, and financial. With the emotional part, you now have the patient that is now faced with this traumatizing inflammation that they have to face. And this actually is compounded by cancer-related distress and all that the patient suffers, cognitive and behavioral actions and all. And so many things happen, the constant worry, and all that. This is where many do not even realize that there’s some psychosocial support that could be available for them, certain tools to be able to face this. Also, we have the physical aspect. The physical aspects come from, for instance young cancer, young cancer survivors, young girls who I have met in the infusion room, who have had their chances of becoming parents cut off because they didn’t even know that these toxic treatments would actually affect their fertility. They’re not being told sometimes and those that actually know, do not even know that this is a possibility for them to be able to save or harvest their eggs. And then you go back to them after their cancer treatments and all that. There’s just so much when it comes to that that’s also part of the experience that gives us all sleepless nights. The one thing I would say is the godfather of all denominators is actually the financial part. And that financial part is the one that wow, we’ve been there; it’s a real issue for cancer families and even after treatments. So we are never prepared, never, ever prepared for the costs of cancer care because we don’t even know what it is that we’re going to be facing. We don’t know what it is that we have to deal with. We have to, first of all, think about estate planning. What’s going to happen to our children? What’s gonna happen to follow-ups? How are we even going to get there? A lot of stuff, health services, prescription drugs, deductibles, co-pays, everything you can think of, actually, affects the financial toxicity, and many, many patients have been known to go bankrupt. While I was actually doing some research on financial toxicity for a program of mine, I came across some data that actually shows that in 2018 U.S. patients paid $5.6 billion out-of-pocket for cancer expenses and treatments. Imagine 5.6 billion in one year. So the financial part of the cancer experience should actually be considered a medical side effect because it’s one that keeps us awake at night and the expectations around costs of care really affects us and makes living very, very stressful. If the patient cannot find answers, then how can they face their journey? Thank you so much.

TREVOR MAXWELL: Thank you, Grace. And I put you in a really tough spot to sum up the patient experience in just one answer, right. But as usual, you did marvelous and brought up so many issues that we face. So we’re going to pass it over to Dr. Greer at this point. As we talk about improving the experience of patients, which Grace was just discussing, how does psycho-oncology come into focus here?

DR. JOSEPH GREER: I do think this is where our field is a multidisciplinary field. Psycho-oncology, you alluded to this, Trevor, brings together a group of clinicians, researchers, advocates, and community partners to really support the whole person in the family going through the cancer care trajectory. And we recognize in the whole person that cancer is not merely a biologic or medical problem on the physical level, obviously, that’s where it starts. But the consequences of that really ripple through their entire life and in all domains of their life. And I’m so privileged to be part of this community of people who are dedicated to not only thinking about what those supportive care needs are, what happens to a person, how does their life radically change upon a diagnosis of cancer, and what happens at different points along that trajectory, but they’re also developing state-of-the-art interventions to really meet those needs. And they are targeting domains around symptom management, supporting treatment adherence, really targeting depression and anxiety, working in the spiritual realm, in support, as well as end-of-life care planning, and, and so psycho-oncology, while it’s sort of a broad field, and it does bring together all these different disciplines, it’s an incredibly rich environment. It’s a holistic perspective on coping with cancer and living well with cancer. These are not mutually exclusive things; we can advocate for a cure, we can invest in novel therapeutics, and we can make sure that as people move through that journey, they live as well as possible and psycho-oncology is dedicated to that.

TREVOR MAXWELL: Thank you so much, Joe. Let’s go to Dr. El-Jawahri. So going back to the first goal of the moonshot: reducing the death rate by 50% over the next 25 years. That’s getting a lot of the headlines. At face value, this is a very physically-oriented goal and a lot of the talk is around physical medicines and chemotherapies and immunotherapies. Will psycho-oncology have a role to play in reaching this goal?

DR. AREEJ EL-JAWAHRI: That’s a great question, Trevor. I think we should absolutely acknowledge that there is a revolution of innovative treatments that are really changing the paradigm of care for patients with cancer, which is really, really exciting. Specifically, as you alluded to immunotherapy, adaptive cellular therapy, just really incredible treatments that have really set us into a place where we are able to think about a cure for diseases that didn’t used to have a cure in the context of cancer and that’s important to highlight. The number two thing to say about this piece is that as we cure more individuals, we have to address the psychosocial toll of treatment and its effects on patients and families. But the third most important piece, I would say is also to highlight that we know that psychosocial issues such as depression, anxiety, psychological distress, trauma of diagnosis. Grace, you highlighted beautifully and eloquently the financial toxicity that patients and families experience. All these have been associated with adverse clinical outcomes, so specifically, mortality, and intense healthcare utilization. And that’s been seen across multiple cancer populations. And so to your point, do I think that addressing psychosocial issues will actually impact that first goal? I think absolutely it would impact that first goal through the fact that by allowing our patients to address these issues, we actually improve their adherence. They’re coping with their illness, their capacity to take care of themselves and their families, and ultimately, the more distal outcome, which is survival, and it’s something that our patients and our healthcare team certainly care about.

TREVOR MAXWELL: Awesome. And if I could get a brief follow-up on that from you. We’ve been talking about cancer in general, and we know like there’s dozens of different, if not hundreds of different, diagnoses. So can you talk about leukemia patients, in particular, is distress different for them versus maybe some of the other diagnoses? This, I think, is a question that was just submitted.

DR. AREEJ EL-JAWAHRI: Yeah, I’m so excited about that question. So thank you for asking that question. This is my area that I feel very, very passionate about. So patients with leukemia are, you know, a patient population that really has a huge amount of trauma diagnosis. And this is not to minimize, honestly, the trauma of cancer diagnosis in general. But these are patients who are typically going about their day, and all of a sudden feel a little bit tired, maybe under the weather, they may go to a primary care office or an urgent care office and they tell them, “Oh, it’s probably nothing. It’s probably your thyroid; we’ll do several blood tests.” And now we know the most common way that these patients are diagnosed is that they get a phone call at eight o’clock, a frantic phone call at eight o’clock at night saying, “Hey, your blood work is abnormal. You probably have leukemia. You need to head to the emergency room right away.” They go to the emergency room, doctors, physicians, clinicians, and honestly, even our medicine clinicians are all scared and terrified of leukemia, because this is a diagnosis that’s immediately life-threatening. And they literally describe this experience as being abducted from their life into a hospital environment for the next six weeks. And that’s the beginning of a very painful and long journey. So you know, acute leukemia is the most traumatic diagnosis in oncology and comes with it a huge psychological distress related to that the social isolation that results by these patients being immediately thrown into the hospital environment, away from their families, and really kind of starting a very intensive treatment that typically has one of the most toxic side effects in oncology in terms of physical toxicities. So you can only imagine, you know, that the language of being abducted, I think, is really a testament to how these patients feel. And so, yes, there’s a lot that is being done. To answer your specific question, there’s a lot that we and others are trying to do to address this trauma. We think post-traumatic stress in this population is real; it’s at the level of what we see in the military setting. And so it’s really important to highlight that the trauma is likely associated with a lot of adverse clinical outcomes later on. And one of the products that we’re partnering with Blue Note on is exactly addressing this area. DreAMLand™ is a mobile app that we developed, really focused on addressing that acute diagnosis period. I would say, and Dr. Greer can correct me, it’s probably the only intervention that has really intervened on patients with cancer literally within days of diagnosis, within an acute period when these patients are first diagnosed. And it’s focused on really helping them process the impossible, helping them cope with that really difficult journey early on and just make sense of the senseless in many ways. And, you know, we have proof-of-concept data from Mass General, a small pilot that we conducted at Mass General Hospital showing that this intervention is feasible and patients find it acceptable. One of the questions you ask is, “How do you get patients to engage when they’re dealing with all of this with a mobile app?” But patients actually picked up the app and used it. And more importantly, we’ve seen some promising data on reducing stress, reducing depression, anxiety, as well as trauma in this population.

TREVOR MAXWELL: Perfectly said, and I have to add, seeing the passion from all the panelists today is such an inspiration and I love it. So Dr. Greer, if you could follow up on that. It’s a good segue. So are there advantages or disadvantages of digital support for cancer patients, survivors, and their families? I guess that question is in comparison with some of these more traditional methods.

DR. JOSEPH GREER: I think this is really interesting in the context of COVID, all the more because we’ve moved into a new era of virtual care that has been profoundly transformative and very much bringing care into people’s homes where they need it and also reducing risk. For a lot of people who are diagnosed with cancer, they’re going through immune compromising treatments and their ability to be able to receive this type of supportive care through a digital therapeutic has been an amazing innovation, both for their coping in their outcomes with respect to their psychological and social well-being, but also just protecting them on the physical level. You know, that this work started before COVID. It got accelerated in the pandemic, but it started well before COVID for good reason. And I think, in part, because there just simply are not enough trained psychologists, social workers, nurse support, psychiatric nurses, palliative care physicians, and nurse practitioners. There simply are not enough supportive care clinician advocates to meet the need. And because of that, digital therapeutics offer a scalable mechanism to bring these evidence-based therapeutic interventions from the psychosocial perspective to people. And the benefit of a digital therapeutic like, say, DreAMLand™ that Dr. El-Jawahri and her team are testing is that we know exactly what goes into it. We know that these are tried and true, effective interventions. And the beauty of that is that it can be tailored to a particular population, in this case, patients hospitalized for AML. But we know that these interventions work. The challenge is just making sure people access that and continue to complete the modules through the app. But nonetheless, the potential for dissemination is quite high. And we’re seeing this in multiple modalities. It’s not just mobile apps or web-based interventions. But the explosion of telehealth has been a huge, huge innovation as well, in the last decade, that’s really helped close some important gaps in care in terms of access, especially for this unmet need and the insufficient staffing infrastructure to meet it.

TREVOR MAXWELL: Awesome, great answer. And I really liked how you pointed out how the pandemic has exposed some gaps or exposed the need while also accelerating some of the solutions. And also that gap in the clinicians and the number of people we need to get into this field if psycho-oncology is going to have the impact we need to have over the next 25 years. I want to go to Grace with that same question about the advantages and disadvantages of digital tools. What do you think from your perspective as a patient?

GRACE CHARRIER: Yes, I am for digital tools, even though we are considered old school, I would say, since I’m over 50. But, you know, I think it’s very necessary now because this is where we are at. These are things that should be encouraging. It’s one of the questions I had wanted to ask Dr. El-Jawahri on how to encourage and optimize the use of digital health solutions. Because, you know, there’s ageism now, people in certain demographics feel that digital therapeutics, who feel like, no, I’d rather see my doctor or whatever. But for me, I am using digital therapeutics now and I think that I am for it and I will continue to encourage people to go with it. Thank you.

TREVOR MAXWELL: So do you want to follow up on that, Dr. El-Jawahri? 

DR. AREEJ EL-JAWAHRI: No, no, I appreciate that, Grace. And I think you know, first of all, don’t call yourself old because actually most of our people who use the apps were above the age of 60. So you’re good there. But I think there are several important points that you bring up. I do think that there’s a comfort with technology that perhaps is associated with age that may actually relate to the capacity and desire to work with digital therapeutics. The number one thing I would say is that sometimes people are just scared of providing them with the digital therapeutic and actually teaching them how to use it. We have had people who have had very low technology literacy or technology competence, and they would say I’ve never used an iPad before. But when you spend the time with them to actually orient them to this, it becomes a fun thing for them to actually explore. And so part of that is we have to think about that piece. And I think it’s important. The second piece, which I think is important to also highlight, is that digital therapeutics are not going to be the answer to everyone. And that’s perfectly okay. The reality is there will always be people whose adherence to digital therapeutics is just not the way that they’re going to be able to engage with material related to their cancer diagnosis or their psychosocial support. But the reality is, as Dr. Greer mentioned, we have a huge mental health and supportive care clinician shortage and so even if we meet 40% of the needs out there with digital therapeutics, and we have made a dent in really providing access and dissemination for a huge subset of the population. And the third piece I’d say about this is we also are really experimenting now with the idea of hybrid interventions that include in-person components. So allowing a patient to develop a relationship with, let’s say, a psychologist like Dr. Greer, but then Dr. Greer also tells them, “Okay, for the next few weeks, I’d like you to do the first two modules from that mobile app that will really reinforce what I just talked to you about and then we will regroup in four weeks and see where you’re at.” And so, by creating those hybrid models, you allow patients who are maybe less inclined to use digital therapeutics to say, “Okay, this is a good way for me to actually be able to build that relationship with an in-person clinician, and at the same time also utilize digital therapeutics as a way to reinforce that.” So I think there are ways around it. I think you’re right, that generationally, we’ll probably see more, maybe we’ll see a Twitter app soon. You know, I’m still not very savvy on Twitter. But I think the world is changing very, very fast from a technology perspective. But I think we have a lot of room for improvement in enhancing adherence to these digital interventions.

DR. JOSEPH GREER: If I may, if I could just jump in here. You know, just on the flip side of this, I mean, obviously, here in this panel, we have a lot of passion for this work and have dedicated our lives to this, but we have to keep in mind there is still a profound stigma for people seeking out mental health support, even in the context of cancer. For many of the patients I see, in their families, they’ve never met with a therapist before. And I do think digital therapeutics, whether that’s in the form of a web-based or mobile app intervention, can be an access point that is more private for people, especially around difficult topics. Dr. El-Jawahri and I have also worked on a sexual health app. And many, many, many people have very, very uncomfortable conversations, and most have no conversations, and when they do have conversations, they have uncomfortable conversations with their clinicians about this. But being able to download an app that deals directly with sexual health in the context of cancer treatment, that’s one way to get people to learn about these strategies in the comfort of their homes and in the privacy that they seek often with these topics.

TREVOR MAXWELL: Yeah, I’m glad you brought up that stigma and shame piece of it too. I mean, in my work with Man Up to Cancer, that’s something that we confront every day, especially with men is getting over that resistance to seeking therapy to begin with. So, Dr. Greer, I want to go to you on this. When we talk about interventions, whether they’re physical medicine or psychosocial interventions, people want to see the evidence, right, the evidence that it works. So what’s there for evidence existing to support that improving mental health positively impacts our physical health outcomes for people with cancer?

DR. JOSEPH GREER: So that’s a complicated question. I’ll try to be succinct here, but there’s decades-long research looking at this. That was really starting in the late ‘80s, early ‘90s. There were some preliminary studies looking at the use of various supportive care interventions, like for example, supportive expressive group therapy for women with metastatic breast cancer that did show that women who received the intervention had better survival. And since then, there’s just been a plethora of studies trying to either replicate that particular intervention as well as a host of other interventions to see if some psychosocial interventions improve outcomes along the domain of survival in particular, and I’ll be honest, that data have been mixed. Our research and our group has contributed to this literature. For those of you who don’t know, Dr. El-Jawahri and I and Dr. Tom Hall, who’s a thoracic oncologist have been doing a lot of work in the implementation, and integration of palliative care from the time of diagnosis for those with advanced cancer, and in particular, those with advanced lung cancer. And we had a fairly noteworthy study that had been published back in 2010 that did show as a secondary analysis a survival benefit of about three months median survival for those who receive integrated palliative and oncology care. It was not a planned analysis from the beginning, but we did note that in a secondary analysis, which begs for confirmation naturally. What’s interesting is we did a follow-up to look at whether the improvements in quality of life or depression mediated that survival benefit in the study that we saw. And although the early palliative care intervention didn’t improve quality of life, and did improve depression in patients who received the intervention, those factors did not account for the improved survival and we did publish those findings as well. But I will note that there are other pathways, and Dr. El-Jawahri spoke to those pathways, which is depression, anxiety, and other forms of distress greatly impact a person’s ability to both cope with their illness and to participate in their treatment. And there’s a direct pathway around health behaviors and completing treatment that we know is linked to survival and I think that is key. All of that is to say, and there are studies that do support that, when we improve distress, we improve adherence and then people do live longer. That pathway is very clear. That is the only thing I will say, and this is my final point. I don’t think we should always feel like we have to prove ourselves in this way. That interventions to support patients and families cope well with this illness and have better psychological outcomes and have better quality of life, that is valuable in its own right, regardless of whether it improves survival or other medical outcomes. So I’ll get off my soapbox now.

TREVOR MAXWELL: No, no, thank you. If I nodded any harder, I’d probably hurt myself. That is just spot on because I’m glad you mentioned quality of life, because survival is one metric that’s looked at, obviously, but quality of life is hugely important for patients and their families. And so I won’t ask you to get into the evidence around intervention, psychosocial interventions for quality of life. I’m sure it’s there. But we’re going to move on. Grace, so I know you had worked on similar efforts to influence the United Nations and to marshal some evidence to the United Nations around psychosocial matters. Could you tell us a little bit about that experience? 

GRACE CHARRIER: Yes, indeed. Before going forward, I’d like to go back just to say that, how I wish that in 2013, when we were dealing with Ebola and talking about mental health and well-being, that we could have had these digital therapeutics, at least something should have come out of it. Because that was one hell of a pandemic, if I must say so myself. But I was one of those that was privileged to work on the transitioning of the MDGs to the SDGs. At the United Nations, and the organizations that I was affiliated with, our focus was mental health and well-being. Why? Because we found out that it had strong inter-linkages, and it was cutting across all the SDGs: poverty eradication, women empowerment, climate change, and that was why we stuck with it. But there was difficulty in trying to push this agenda across, because like you earlier mentioned stigma, it will always be there. So when we were dealing with member states, there were a lot of them that were like, “Oh, we have to revert back to capital, it’s not a priority. We have other things to think about. Why can’t we just leave health as it is and not include mental health?” But then heaven helps those who help themselves, I say. We were determined and consistent with what we were asking of them. Then the Ebola pandemic struck and then we had a lot of African children who had to bury loved ones, who had loss of income, who were going into drugs as a means of escapism, and dealing with all this. And so we brought that back to the table with our collaborators on the ground who were now giving us feedback on what was going on. And then you won’t believe that it took quite a bit of nudging to be able to provide this evidence to say, this is what is happening, and it’s starting with our children. What are we going to do? Let us include mental health. We were very fortunate that—it’s like politics here—you have to cross the aisle. So these member states had to reach out to allies to be able to say, “Hey, listen, this could happen to anybody. Let’s go with it.” And so eventually, they were able to insert mental health and well-being and they even went further to insert it as psychosocial well-being and resilience. And that is what we have as SDG 3 Target 3.4 today. So we continue to pat ourselves on the back for that accomplishment. Thank you so much.

TREVOR MAXWELL: Really remarkable. Thank you, Grace. Thanks for sharing that. I want to move on to Dr. El-Jawahri for this next one. And I’m kind of combining a couple of questions here for the sake of time, but we’ve talked about telehealth and digital tech playing a greater role in treatment interventions. Can you talk about how cancer centers such as Memorial Sloan Kettering or Massachusetts General Hospital, what are the roles that those centers are playing and could even play more in the future?

DR. AREEJ EL-JAWAHRI: That’s a great question, Trevor. I think there are several important aspects there. One is increasing access. So I think you know the Cancer Moonshot Initiative and others have all talked about the importance of health equity as we think about addressing disparities in cancer care. And one of the critical roles that our cancer centers can play is providing equitable access to digital technology interventions for patients and their families. We do this by, I think both Memorial as well as MGH, but really cancer centers across the country are doing this, they are providing access to iPad technology for patients that they will be able to take home or use in the hospital. That’s where the future is going to be. This will be, you can imagine, you check out an iPad or you check out your instrument and use it. Those would have WiFi capacity. So I think there’s a responsibility and obligation that we have in thinking about how we enhance access to digital therapeutics, additional innovation for all of our patients with cancer across our communities. The second piece, I think that’s really important is really investing in psychosocial oncology and supportive care infrastructure. And that’s including digital health and non-digital health. And I think over the past decade, both due to research that Dr. Greer spoke about, but just the power that we have learned about monitoring patient reported outcomes, like actually asking patients about their symptoms, asking them about their quality of life at regular periods has really has been shown that these type of interventions that monitor patient’s symptoms and quality of life over time in the outpatient setting have been shown to improve survival, improve symptom burden, and has outcomes for these patients. And so we need to also invest in our capacity to monitor our patients. We need to leverage technology and think about how to best monitor patients, both in terms of their patient experience, but we think about monitoring their performance status and functional status. We have activity, we have so many different ways now to collect data on our patients, integrate that data into our electronic health record, and really empower our clinicians to take better care of patients and families. And I think that’s happening already. And I will say that’s happening across MGH, but it’s also happening again, across the country. There’s a real investment in this idea of really trying to meet patients where they’re at through their cancer journey.

TREVOR MAXWELL: I love the sense of hope that you speak with that’s just contagious. So let’s keep it going. This is an open question. I don’t know if this might be for you. Dr. El-Jawahri, also might be for Dr. Greer, but is there anything else interesting or noteworthy about how the Cancer Moonshot will address the disruption we’ve seen in research and clinical trials? And do you anticipate that we’ll see an increase in the availability of trials? I’m not sure which one wants to maybe take a stab at that.

DR. AREEJ EL-JAWAHRI: I can start, Dr. Greer. So you know, I think we and others, I would say, across therapeutic clinical trials that are focused on cancer therapies, as well as supportive care interventions and non-intervention studies have really suffered due to the COVID-19 pandemic. It has affected so many of our researchers, both in terms of ongoing projects, but also the capacity to carry on new projects and new ideas. And it’s been a really dark time for researchers across the country over the past couple of years. And so I do think this idea that there’s both empowering the National Cancer Institute. But really, one of the important initiatives is also a cross-agency collaboration in the Cancer Moonshot Initiative that allows various NIH agencies to work together to really support both our young generation of researchers, which is really critical. These are the people who are going to make the difference 30–40 years from now, and we need to invest in them, as well our mid-level faculty who are really struggling to carry on their ongoing project, but also really think about the future. So I do think we need funding investment. And this initiative does come with a lot of funding both for therapeutic clinical trials, as well as for supportive care and psychosocial work.

TREVOR MAXWELL: Thank you, we’ve actually reached the point where we need to jump into the Q&A’s. Sorry to cut you short, because I know all of these we could talk more on. So we are now going to open the Q&A. We have a couple of questions here from the audience. We’re going to spend 10 to 15 minutes on questions. If you have questions, please put them in the Q&A feature. So one of the questions here, and maybe Dr. Greer can take this, is when you start to think about a new digital therapeutic, how do you apply cultural, religious, and societal norms into digital formats? 

DR. JOSEPH GREER: And this is a huge, huge area of growth that we need to lean into. To be honest, when we think about one of the reasons why digital therapeutics sometimes have lackluster engagement is because of this. I’m speaking a bit more historically, because these are getting better is because they have felt too generic that we, my field in particular, where we’ve done a lot of great work in using our types of clinical trials of psychotherapy interventions to show that, yes, we can improve patient’s psychological well-being, we can reduce depression, anxiety, and we develop these wonderful manuals that are effective, but then unfortunately, sit on a shelf and don’t really help anyone because they’re not getting out there. Digital therapeutics are sort of this wonderful avenue to really bring that forward. But a direct translation of a manual to a web-based platform is not enough. It’s certainly not enough to engage a human being. So we have to be creative about tailoring and tailoring can happen through multiple mechanisms. So you can tailor it to a population, right? So you have an individual who maybe has a particular diagnosis. And I think DreAMLand™ is an excellent example of that, where if I feel like this is speaking to my lived experience with AML, I’m much more likely to go to the next module. And then even within a digital therapeutic, you can think about tailoring that’s even more about decision trees to say, “Are you experiencing this? If so, go down this pathway. Or if this resonates with you, go down that pathway.” And I do think this is a place where we can make these more sophisticated with respect to understanding both culture, religious orientation, as well as other various demographic and clinical factors that are meaningful for an individual. By that I mean, even at the simplest level, what kind of icons we have represented within a digital therapeutic really, really matters. And so I think the next generation, which is kind of where we are at now, is giving a lot of thought to this, because, unfortunately, the data have shown that about half, when you look at the studies of digital therapeutics, historically that about half the patients don’t finish them. And I think this is one of the primary reasons, frankly, is that it doesn’t speak to them; it doesn’t speak to their identity, or to their particular experience. So, navigating that tailoring I think is critical. Huge.

TREVOR MAXWELL: Thank you. And I see Dr. El-Jawahri already doing a lot of nodding down there. So I’m going to see if she wants to add on that same question.

DR. AREEJ EL-JAWAHRI: No, I completely agree. I do think patients need to be able to see themselves in these apps. They need to see their experience in these apps, they need to relate to the user experience in these apps. And I think we use exactly what you use for other research. The reality is we’ve been adapting interventions, culturally, for many, many years, that the cultural adaptation process involves engaging community participatory research, engaging stakeholders from the community to help us think about how this experience differs, and how do we address their needs. And so I can’t emphasize that enough, we need our patients and their families to be part of this process. They are active participants in the research, but also active stakeholders and helping us really develop better interventions that speak to their needs.

TREVOR MAXWELL: Thank you. I’m glad that you weighed in on that. We have a question that is right up Grace’s alley here. From your perspective, as a patient, what would you say to someone who is afraid to say, “I’m struggling?”

GRACE CHARRIER: I would tell them to say it out loud and I would normalize it, I will normalize whatever they tell me. And give them comfort and hope that they, too, can go through this because it’s a struggle for somebody to come up to you and say, “Trevor, I’m having issues. I don’t feel okay.” It takes a lot. They’re being vulnerable, and so one shouldn’t shrug and say, “Hey, man, it’s gonna be okay. You know, just deal with it, you’re a guy,” that kind of thing, or just keep quiet. You know, so many people are going through this and nobody hears them. But I would continue to encourage them to open up. Only by opening up, do we really know what people are dealing with. Being a cancer patient, I had to struggle. It’s not easy to open up. I had to struggle to actually say, “Hey, I’m having some issues. I don’t feel okay.” And with that, it gave me strength to now encourage others.

TREVOR MAXWELL: Totally. Thank you, and I’m gonna hop in real quick with my own answer. I’m going to give myself a little permission that when I first went into the depth of anxiety and depression related to my cancer, I thought I was the only one. I thought I was just crazy and then I learned it’s so common. So I think the first thing I want to tell that person who’s struggling is that you’re not alone. You’re absolutely not alone. You’re, in fact, in the majority of the people going through this. And then secondly, like you said, we need to reframe the seeking of help as a strength rather than a vulnerability or a weakness. And I think we can do that together, for sure. 

GRACE CHARRIER: Absolutely, I think so. 

TREVOR MAXWELL: This one may be for Dr. El-Jawahri. How are you going to get patients to engage specifically when it comes to patients that struggle with PTSD from their cancer? And talk about that hesitation, some of those barriers when you’re going through a mental health difficulty.

DR. AREEJ EL-JAWAHRI: Yeah, I will first say that we are trying to prevent PTSD from happening altogether. So one of the biggest things is trying to really address the stress early. We do believe at least in the context of leukemia, but I would say this is true for other cancers, it’s the experience in the context of leukemia, that initial hospitalization, that seems to be clearly mediating the stress and the PTSD symptoms later on. So essentially, what’s happening to these patients is that they are going into the hospital, meeting all these clinicians and people saying, “Oh, my gosh, you’re going to die.” And they go into the hospital, and they experience lots of physical side effects and symptoms and toxicities of treatment. And so what do you think they think? Oh, my gosh, I’m dying, right? So they’re facing their own mortality. And in fact, these patients are actually typically rare to die during that initial hospitalization, but that’s the thinking. And so that is what we think that decline in quality of life and distress during hospitalization, are strongly associated with the PTSD symptoms that are happening later on. So one of our earliest efforts is really to prevent PTSD by addressing that acute distress by normalizing, Trevor, to your point and Grace, to your point, by normalizing that it’s normal to feel distressed, it’s normal to feel isolated. And by the way, we’re normalizing these symptoms that are expected as part of that trajectory of your illness. And they don’t mean that they are dying. And guess what? We will tell you if you’re dying, but this is not it. And so that process in itself is actually reducing PTSD. So prevention, I think the second thing to remember is that, you know, and this is true for PTSD, as well as other psychological distress, when patients are typically more anxious and have more trauma, or they’re actually more likely to actively engage in interventions to address these issues. On the other hand, when we deal with depression, often there is an avoidance piece to it. So one of the things we can do on our end, when we develop these interventions, even if we have someone who has active depression or anxiety is thinking through one, how do we allow them, for example, to engage in an experience that allows them to think about their care for AML without thinking about the hospital stay that really triggered that initial trauma, for example. So one of the things that Dr. Greer and I did initially with DreAMLand™ is really create this experience outside of the hospital setting in a nice, natural environment that’s inviting, nice to look at. It gives people an escape from the medical trauma, if you will. And like I said, there will always be people who will probably not engage and they may have severe depression symptoms and their capacity to really get the help they need from a digital app is limited, and that’s okay. And those are the patients who really need to see Dr. Greer, and one of our psychiatrists for therapy as well. 

TREVOR MAXWELL: Terrific, thank you so much. I have another question here. I’m just gonna read this whole thing and then possibly Dr. Greer can tackle this one. Accelerating research and development of digital therapeutics in psycho-oncology will be aided by FDA approval and reimbursement by commercial insurance. Where can advocacy groups aid in this effort with various government agencies and insurance companies? The role of advocacy groups and therapeutics has been important, any early initiatives in this area of research? 

DR. JOSEPH GREER: This is really pivotal, frankly, for I think, the broader dissemination of this work. And it sort of divides out between kind of how interventions, the uptake of interventions versus just throwing a product on the App Store, you know, that there’s no shortage of that. But what we are talking about is evidence-based interventions through digital media that we know improves outcomes like quality of life, improves depression, anxiety, and therefore deserves to go through a rigorous process of evaluation that gives credibility to the prescriber, that’s the language of our medical world. And so the ways we create the validity and credibility in those interventions is going through that rigorous process. And once the FDA looks at the data, and they say, “Yes, this is a device, this is a therapeutic that we know is going to improve outcomes,” that starts to open the doors for reimbursement and then patients and clinicians take notice. And so it’s an access issue; it’s a scientific issue to ensure the efficacy of these interventions. And I have to say, it’s a laborious, as we’ve been learning over the last year, process to move through the steps of this with the FDA. You know, as a psychologist, I don’t prescribe medications; I run psychotherapy studies. And now that I’m entering this world, I’ve been learning a crash course on what it means to work with the FDA through creating a digital therapeutic that they approve. And I’m heartened by the fact that it’s rigorous. That tells me that they care a lot about the science, and they want these to be something that they can get behind. So that’s our work, right? We have to do the science. And we have to bring it through the process through the FDA. But I do agree with you, I think where advocacy groups really make a difference is in raising the conscious awareness of our politicians and policymakers to understand why this matters. Because unfortunately, in Washington, it’s still reduced to only thinking about improving survival. And I’m not ignoring that, that of course is primary, but it’s not at the exclusion of the lived experience. And so when advocacy groups bring that into the conversation, policymakers take notice. But anything we can do to collectively raise our voices to get politicians and policymakers to hear us, that’s what’s going to make the difference, ultimately.

TREVOR MAXWELL: Awesome. Thank you so much. I want to try to squeeze in two questions real quick before we get to our final question. So real quick, this is from a patient who has asked us: What should I as a patient say to my care team to unlock any resources that might be available through our center? So if one of the doctors here could address what those words are to get you what you’re looking for or that help you need.

DR. AREEJ EL-JAWAHRI: Well, I think it’s, Trevor, what you said, “I’m struggling to cope with this.” I don’t think you need to label it. Or, “I’m struggling to cope with this. What supportive care resources do you have to offer at your cancer center?” I think the reality is, as we mentioned, there is stigma around mental health issues. And patients may not feel comfortable saying I’m feeling depressed, or I’m feeling anxious, but I’m struggling to cope with us, and what resources do you have to offer me? 

TREVOR MAXWELL: Thank you. And Grace, I want to start out with you on this one. Can you talk about your views on the role of caregivers in addressing this stuff? The cancer stress, including digital interventions, what are your thoughts on the role of the caregiver here?

GRACE CHARRIER: Yes, this is very important. Thank you, Trevor. Caregivers sit at the very core of the cancer or, let me say, of the patient experience because they’re like the crew behind the scenes. They make things happen. They get us going. So their own mental health too, I must say, is very important to look out for. And they should be told that such tools are available to them, because many do not know that these things exist. Usually it’s like they would ask the cancer patient who is going through something, do you need this? Or do you think you need this? But what everybody forgets is that the caregiver is taking the brunt of everything. They also have to be taken care of, and if they can’t be taken care of, then we are the ones that are going to suffer the most because without them, we can’t be. I think also that there should be some kind of information put out there that the caregivers also could seek digital interventions, digital health interventions. They won’t tell us as their patients that they’re going through this. They won’t because they want to be the ones in charge, but they have to be told that this is available. Thank you.

TREVOR MAXWELL: Thank you, Grace, and I wish I could get Dr. Greer and Dr. El-Jawahri, their perspective on this, but we have literally no time left and I want to be cognizant of people’s time. Everyone is so busy. So thank you again for joining us for this hour that has gone by just like that. As we wrap up, we want to leave our listeners with hope for the future of cancer care. I feel like this has been a very hopeful conversation. What excites you most about the Cancer Moonshot and the future of psycho-oncology? Dr. El-Jawahri, do you want to go first?

DR. AREEJ EL-JAWAHRI: Gosh, I don’t want to go first. With this one, I have to think about it. I am just incredibly excited for the capacity, the immense capacity that we have to make things better for our patients and families. I think we are at a place where we understand the science of supportive oncology and psychosocial oncology, so much better than we did. We are at the cusp of really a paradigm shift in figuring out how to best get the care to all of our patients across the continuum of illness, and really address issues related to health equity that are really, really impacting our underserved communities.

TREVOR MAXWELL: Okay, for an unprepared question, that was ridiculously good. Okay, Dr. Greer?

DR. JOSEPH GREER: Well, to build on that, what I have really seen in the last five years that gives me a lot of encouragement, and really does make me excited is that we are moving into this collaborative, highly collaborative science, that is advancing the field that is absolutely bringing in patients and caregivers as key stakeholders. It is transforming the way we are developing these interventions and tailoring these interventions. And I have to say that because of that, because these different voices are represented, from every perspective, the clinician side, the research side, from different disciplines in the patient, caregiver side, that I just feel that I’m seeing the effects of these interventions are just stronger and more robust. And we’re being very creative about how to integrate them into the flow of care in a way that’s accessible and not so burdensome. So to me, it’s like those are the next big questions. And I’m so grateful to partner with my colleagues, and those with whom I’ve worked who’ve been so influential in my research. I have a great deal of debt of gratitude to them. And so that’s my answer.

TREVOR MAXWELL: Thank you so much. And we’re a minute over, but I would be rude if we didn’t let Grace finish with the last word on this. And also, just to note, if we didn’t get to your questions, please follow up with the team here. And also, we’re gonna stick around for a couple minutes if you want to hang out. So Grace, what are you most excited about for the Moonshot?

GRACE CHARRIER: I’m so excited, especially for psycho-oncology and digital health. I mean, there’s been improvement in leaps and bounds, and I can only just hope that the future has a lot more to offer. Thank you.

TREVOR MAXWELL: Well, that puts a bow on it. Thank you all. Thank you, Dr. Greer, Dr. El-Jawahri, Grace, just a fantastic conversation. Thanks, guys. Thanks so much.