Patient's Voice: How can clinicians engage and activate patients on their cancer journey?

Summary
Jasmine Souers, founder and CEO of the Missing Pink Breast Cancer Alliance, discusses the need for collaboration and innovation in cancer care, particularly for minority communities. She emphasizes the importance of engaging patients as integral members of the care team and addressing the unique challenges they face. Souers highlights the lack of representation of minorities in clinical trials and the impact it has on access to the best treatment and care. She also emphasizes the need for effective communication, trust-building, and whole person care in cancer treatment. Souers provides advice for newly diagnosed patients, encouraging them to empower themselves, seek knowledge, and find community support.

Takeaways

• Collaboration and innovation are essential in cancer care, especially for minority communities.
• Engaging patients as integral members of the care team is crucial for improving outcomes and quality of life.
• The lack of representation of minorities in clinical trials hinders access to the best treatment and care.
• Effective communication, trust-building, and whole person care are vital in cancer treatment.
• Newly diagnosed patients should empower themselves, seek knowledge, and find community support.

Chapters
00:00 Introduction and Background
01:07 Collaboration and Innovation in Cancer Care
03:59 The Lack of Representation in Clinical Trials
08:03 Effective Communication and Trust-Building in Cancer Treatment
13:24 Engaging Patients as Integral Members of the Care Team
16:38 Empowering Newly Diagnosed Patients

Resources

• The Missing Pink Breast Cancer Alliance

Check out the book: "Healing and Cancer: A Guide to Whole Person Care"
Visit https://www.healingandcancerbook.com/ for more information.

Connect:
Twitter: @DrWayneJonas
Facebook: Dr. Wayne Jonas
Instagram: @drwaynejonas
LinkedIn: Dr. Wayne Jonas
LinkedIn: Alyssa McManamon

Visit Healing Works Foundation www.healingworksfoundation.org for more information.

Dr. Wayne Jonas is a board-certified physician and Dr. Alyssa McManamon is a triple-board certified hematologist/oncologist. The opinions expressed on this show are those of the hosts and guests and do not necessarily represent the views and opinions of their places of employment, the Department of Veterans Affairs, or the United States government. The opinions expressed on this podcast are meant for entertainment and education and should not be used to diagnose or treat any medical condition nor should they be used as a substitute for medical advice from a qualified, board-certified practicing clinician. Dr. Wayne Jonas and Dr. Alyssa McManamon have no relevant financial disclosures.

Transcript

Please note that this transcript is produced electronically and may not be an accurate representation of what was said. It may not be reproduced, edited, altered or modified in any way without prior written permission. Any use of quotes or excerpts from this interview requires explicit permission from Healing Works Foundation. Please contact us at healing@healingworksfoundation.org if you would like to use any part of this transcript for quotes or other purposes.

“How Healing Works with Dr. Wayne Jonas & Dr. Alyssa McManamon”

Patient's Voice: How can clinicians engage and activate 
patients on their cancer journey?

Alyssa McManamon (00:02.462)

Welcome to How Healing Works. I'm Dr. Alyssa McManamon. Today I'll be talking with Jasmine Souers, founder and CEO of the Missing Pink Breast Cancer Alliance, an organization that connects organizations focused on people of color affected by breast cancer. Jasmine is a return guest to How Healing Works, and I'm happy to have a chance to talk to her this season with regards to the work in cancer care that she's been doing, specifically how to engage the patient as an integral member of the care team. Thank you so much for joining me, Jasmine.

First, can you tell our audience a little bit about the Missing Pink Breast Cancer Alliance and yourself?

Jasmine Souers (00:37.703)

Well, thank you so much for having me back, Alyssa. I'm happy to be here. Yeah, so I am a young breast cancer survivor. I was misdiagnosed at 25, accurately diagnosed at 26. I navigated a lot of challenges. It felt like they were unique to me at the time as both a young black woman affected by breast cancer. And then I started to get into the world only to realize that some of these things were actually the norm. Over the years, I've done a lot of advocacy work. And one of the things that really struck me is how disjointed, and sometimes, 

duplicative the efforts were, especially when it came to supporting minority communities. And so when I created the Missing Pink Breast Cancer Alliance, it was with this idea that innovation comes through collaboration. We really are each other's best resource as we think through what it takes not only cure cancer, but to improve quality of life for all patients.

Alyssa McManamon (01:29.362)

Yeah, that's amazing. And what you said in there that I think struck me the most was this idea of you saw the duplicative nature of some of the organizations and you wanted to do something different. And isn't that fascinating? Everyone's seeing the same need, so then they're responding. But you were still having the same need despite all those organizations already existing. So it's a really what they call wicked problem. And you're coming at it from another way, which is great. 

Jasmine Souers (01:52.991)

Absolutely, absolutely. And I think it can be a little confusing for patients, too, that there is so much duplicative effort. And if no one really steps back and says, how can we catch people that are falling through the gaps, then how do we make things better for everyone? I think with so many programs, it can be confusing for patients. It can also be confusing for providers, and social workers know where to direct patients. So any efforts that can kind of bring synergy to the space makes it easier for absolutely everyone involved.

Alyssa McManamon (02:20.578)

Yeah, that makes a ton of sense to me. So I can hear what inspired you to start, you know, the Missing Pink Alliance because of your own personal experience and seeing others experiences. And really, when we talk about kind of what were the needs that came up either for you or you saw for others or the barriers to those needs. What did you really identify specifically, you know, that you wanted to work on?

Jasmine Souers (02:43.543)

When I first entered into the community, there was these interactions with my provider, right? It was, what does it feel like to be overlooked? What does it feel like to not be heard? What does it feel like to not have an understanding of the type of scans and things that are being needed? It was really putting all of my trust into one person and not really understanding that doctors are people too, right? Like they're not imperfect. And it really did require me to learn I want for myself. And so throughout this journey, I noticed things, again, like being dismissed, not being listened to, what's the best way to say it? It is a detriment, like lack of knowledge of not knowing enough about the thing that you're trying to make a plan regarding. If you don't know your type, you don't know your stage.

I think one of the most pressing things that I learned early on when I started to realize that, oh, this is a big problem, was looking at the representation of minorities in clinical trials. That's where I was like, whoa, this is really bad because we already know that Black women in particular, they get breast cancer at a younger age. They get more aggressive breast cancers. They're more likely to be diagnosed at a later stage.

We also know that they have different side effects to treatment. So if we're not in the clinical trials, if we're not being represented, then that means that we don't have access to the best treatment and care. And so when I thought about what it takes for us to do this differently, it really was thinking about what I can learn from other organizations and what other organizations can learn from each other to make our work better for patients.

Alyssa McManamon (04:20.682)

Yeah, and to completely not overstep what started your journey, which was a misdiagnosis. And I know you talked about it last season and just now again, but you're right. Doctors are not infallible. And certainly, you came up against that pretty quickly and realized you were in a situation. Many young women, of course, as oncologists, we see those cases because they come oftentimes from a primary care setting somewhere before they get to us with finally a diagnosis. And...

It's not uncommon to see this. And so I think that the awareness you're raising about how young patients can present with breast cancer, just as much as an older person can present with breast cancer, whether they're male or female, I think is a really important message that, like you said, can help everyone across the board, regardless of all the particulars. So I really appreciate that. 

So kind of moving into, just so you know a little bit about, I know you were part of the Patient Advocacy and Empowerment Collaborative. And so you know that we had you guys review what we call the personal health inventory, which is a form that I use to help deliver whole person care. And it's kind of the anchor to the hope note, which is what's documented in the medical record in the cases of patients who I care for in whole health. But really, that form gives people in terms of the providers a better understanding, hopefully, to begin the conversation with people about what truly matters to them.

And so I know you're a little familiar with that. We're hoping more people can get familiar with that and that could be helpful to people in practice. Because once the provider has a better understanding of say you as the patient presenting that day, that will really lead to hopefully better care for you and also to more partnership. And I think if we don't invite the patient's voice, how are we gonna partner with somebody as, an equal as a person, right? There's expertise that I have that you don't have and we just talked about that.

Alyssa McManamon (06:11.714)

But separate from that, we're both people trying to meet in the middle on something that 100% affects you, kind of somewhat affects me, but 100% affects you. And we will never be able to get past that unless we kind of come together. So, you know, that's really our hope with the hope tools and the hope note and whatnot. But I just wanted to ask you in your personal experience, you know, coming to shared decision-making in whatever way that looked like for you and your providers.

Can you say in what ways the cancer care team can better really serve patients and in your experience, specifically people of color?

Jasmine Souers (06:47.583)

One of the things I really love about participating in the Patient Advisory Council that was about the integrative work and the whole person care is they introduced me to this idea of healing that's in its personal definition, that everyone does not find healing the same, right? And I think that really allowed me to step back a little bit and start to see like, okay, that's what I was thinking of when I was trying to make the decisions for myself. I was trying to think the life that I wanted beyond cancer.

Jasmine Souers (07:17.097)

One of the experiences that stood out to me was the experience of going into my medical oncologist and I'm asking them about hormone therapy and the response I received was we'll worry about babies later.

But the treatment that they were going to put me on could make me ineligible, like not able to have babies down the line. And so their unwillingness to give me the information so I could make the best decision for myself, their unwillingness to hear what I was saying, that hey, I'm 26. I want to understand, I want a life after this. I want to think about my life after that. That was a big moment for me. But what that again did is it meant I had to find another doctor. And I think that's so important for patients. This is how we get to a place where we are finding doctors that we can trust and 

trusting a doctor means they have to be able to communicate with me. They have to have my buy-in on the plan, not just making the decisions for me.

Alyssa McManamon (08:03.05)

Yeah, yeah, like, you know, throwing out, like they say, like a salvo, like making a question and seeing how it's, you know, in that case, not received, you know, really kind of shut down maybe is how it felt, I would imagine. So like that is a signal as a patient of maybe the next step, which for you is to find a new doctor totally makes sense. You know, it's really interesting though, like if your question, if you can't get your question answered and you know, you have a knowledge deficit because you're not medical, of course, that would be, yeah, first step.

That’s a helpful illustration. So, you know, and for you, did you feel like that had something to do with the fact that you're African American? Did you, like I'm asking again, because it's just like, is there, because there's bias in medicine, whether it's unconscious or not, right? And I'll give you just one example that, you know, my experience, of course, I have stories of people who are African American young women who were misdiagnosed in my own practice, you know, over the years. So I have seen the actual thing you experienced as well. But separate from that,

Sometimes I'll notice like people's body language, like from the waiting room versus like when we start, when we can get like really started and like people just like, sometimes people of color I'm talking of can just like the body language can just like release, you know, because if we can get there that we're really meeting on like you're a person, I'm a person, I'm speaking in a language you can understand.

Alyssa McManamon (09:26.354)

And it's been something that I can actually see. I'm not saying it happens every time. Everybody's got barriers all around that we don't realize we have. But I just, I do really feel that, you know, there's something there. And I just wondered, yeah, if that was part of your experience.

Jasmine Souers (09:42.467)

In the study, now I did have other situations that were more race driven, especially when it seems like discriminatory or people not thinking of black women and their services in general. And this instance, oh, so let me first say that the studies have indicated that doctors tend to prescribe less effective treatments to black patients because they don't think they're gonna be adherent to their protocols and they are less likely to give them the information, right? They've assumed that black patients don't want to know things. 

And so that assumption then puts us both in a weird place, right? So you don't tell me what I think I need to know, and I don't even know what questions to ask you. And we're on this weird playing field. So like, I'm leaving and I don't have clarity. I'm leaving and I'm going to my friends. I'm leaving and I'm going to Facebook because I just don't feel like I can really have that conversation with you. And so I think that again goes back to trust. And I think to your point.

One of the things I mentioned in my last interview with you guys is that study I led during my time For The Breast of Us. It was very important to me that we looked at controllable factors and trust building beyond race. People can't control what race they are and you can't control the race of providers that you have access to as well. We know that having black providers to having more diverse staff does equate to better care for black patients, but

at the same time, she building on both of those, right? We should have more diverse providers, we should also be able to implement practices that make patients feel welcome and invited. In this case, I think it was more of me being young and her feeling like maybe I didn't. I think sometimes doctors, honestly, that they think that they give us too much information, they'll scare us away from making the decision they want us to make. And I think that's where the heart of the problem is, is that it's not a decision for them to make, it's a decision for us to make together.

Alyssa McManamon (11:28.687)

So it comes back to really your sovereignty as a person, as a patient in this scenario, and yeah, and that there could be concerns. Yeah, I get that. Thank you for answering. When you look back now and you kind of think about your experience, do you really...

have a sense of how your care could have been improved, or can you think of instances where you're like, that was completely whole person. They got it right, I felt great, I felt respected, and things rolled out in a way that was useful at any time during your care trajectory to now.

Jasmine Souers (12:00.671)

I think one of the most interesting things, this is something that I mentioned during my time on that Patient Advisory Council too, is recognizing that not everyone is gonna have access to what whole person care looks like in one place. And so for me, it really did require that I had to understand the different needs that I had, and then I had to start to get to different resources. Okay, I need a mental health, go get a therapist. Okay, I like to learn here. It would have been great if I had access to all of that in one place, it would have been much easier, but unfortunately, I did not have that experience.

Alyssa McManamon (12:32.198)

And most people do not. So the accessibility can definitely be a challenge, like more than a part-time job, it seems. Yeah, well, yeah, yeah. So just kind of looking forward, how do organizations that you work with support cancer teams to be able to coach and educate their patients on how to improve their health?

Jasmine Souers (12:40.001)

Absolutely.

Jasmine Souers (12:54.647)

So I think lately I've been seeing some great trainings come out, LBBC, Living Beyond Breast Cancer, they have a great patient navigator program. Komen also has a navigation program. Again, the goal is to help the people helping the patients. I think sometimes we forget, and that was the heart behind the missing pink. Sometimes we forget that a lot of those barriers can be created by the people who are helping the patients. It's great that there are all these amazing trainings out there that are helping our providers and the people that support patients, better support patients.

And as also opportunities, I think you have to invite the patient voice in everywhere you can. I've been in conversations where people were talking about how do we improve patient communication? 60 doctors and I was one of two patients and I'm going how can you improve patient communication without the patients? So you absolutely have to create that feedback loop with patients and with patients that represent the community you serve as well.

Alyssa McManamon (13:48.77)

Mm-hmm. That's a great point. Yeah, always including the patient voice or doing your best to do that is gonna make the program better. So it's excellent that you've been able to make that part of your time and career and your volunteer work as well. Great. So when I think about my practice, I mean, I certainly try to form partnerships with patients and it really has to be what...

everybody's level of comfort is. And sometimes that's realistic for the person based on how sick or not they are. And sometimes they really just need to be 100% supported because things are not in a place where they're ready to have to think and make these decisions in the very moment. Not that can't happen over time, but I do believe that when a patient is interested and able to make their own decisions and be involved in their care, they're gonna have better outcomes, meaning that they are actively involved.

And numerous studies have shown this, that a patient who is involved, really the active involvement of cancer patients and those who suffer even from other chronic diseases, we know actually do better in terms of the management of their disease and that can improve quality of life and their patient outcomes, as well as reducing healthcare costs. So we know that's a good thing. How do you personally feel that you have empowered and activated yourself in your healing journey?

Jasmine Souers (15:07.287)

I think one of the things that I didn't even realize I was doing at first, the benefit of it was being in patient communities. It was in the hot tub at YSC where I started to learn about the challenges that I had with different sexual issues that were a result of hormone therapy. I was suffering in silence. I was embarrassed. I didn't know what was happening. And then the other ladies were saying, hey, there's help for this. And that opened up a whole new world for me. So I think patient communities, and I will say this too,

Not everyone is going to want to be involved in community at the same time or maybe at all, but there is absolutely value in being able to learn from other people who are navigating very similar roads. The other thing...

is making sure that you are getting all the information that you need for yourself. Being clear when you're saying, you're giving me all this information and the example about the hormone therapy and infertility. When I said, like, this is not a conversation I felt went well, they gave me a pamphlet and told me it was like, move on. And I left still because I'm like, I wanna have a conversation. And I think we may have gotten, I think especially in COVID era, when everything got digital, we moved so fast. We still need to make room for conversation and make sure that patients have clarity

about things that are happening in their care and about what they want to happen in their care. And then the last thing, like we mentioned earlier, is to make sure that as decisions are being made, patients have an idea of the life they want down the line, right? Even if they're living with MBC, quality of life is still something that they want to consider. And so I think it's important to empower patients from the beginning, even though it feels very rush, rush. There are so many things now, even the reconstruction decision that doctors kind of discourage me from doing what I wanted to do, but now I have to live with that, right? And so I think if we can just really encourage patients to think from the beginning, what do you want your life to look like a year from now, a couple years from now? I think that would be great.

Alyssa McManamon (17:02.714)

Yeah, I think that's wrapped up in what matters to you. It's like you're saying, inviting people to imagine it, having a conversation about it. It is hope generating, right? To be invited to a conversation about what matters to me as a patient, what matters to you as a patient, and to say there is an unknown future, but if you could say what it looks like, what does it look like? And then moving towards something rather than moving away from something. So a lot of what we do in our cancer care is really

moving away from recurrence, moving away from death, moving away from a bad surgical outcome after radiation. So we're moving away from negatives, whereas a person who's living life is trying to move forward into ideally what they want. And so it's just a very interesting, turn the conversation on its head, try to have both conversations and allow that voice of the patient to say, hey, over here, there's also this thing, but nobody's asking me.

That's great. When I taught in medical schools, there was a social worker, spouse of one of my colleagues, and she brought into our awareness, the term liminal space, which is betwixt and between when somebody's kind of on the precipice between two things. And so I think about after a cancer diagnosis, it kind of is, it's like, you're not dead, but you're worried you're going to die, but you're still alive, but you don't know what it's going to look like in that place after the betwixt and between.

And so inviting that conversation and allowing people to imagine it is what you're saying. And I think it's beautiful. It's great.

Jasmine Souers (18:32.731)

And I think it goes back to the idea of not just seeing your patients as people, right? Not just a diagnosis, not just a disease, but understanding to your point what's important to them and who's important to them and how those things impact their treatment decisions.

Alyssa McManamon (18:48.906)

Yeah, yeah. And some of those people might not have been born yet in the example that you gave, you know, trying to think. It's a pretty broad definition that we're going with. That's good. So this is something I've been really excited to ask you and really, you know, curious about your answer. So what advice do you have for patients that are newly diagnosed and navigating the healthcare system?

Jasmine Souers (19:15.467)

I think we'll start with the first one is to put yourself in the driver's seat. Put yourself in the driver's seat. Have a vision of where you want to go at the end of this and invite your family, your doctors to get in the car with you, but really like take the time if you can to, and I will say this too, even if it comes to like you don't feel comfortable like with terminology that YSC has great glossaries, BreastCancer.org great glossaries.

There are so many places where you can get the knowledge to equip and empower yourself to understand what's happening. It's so important that you understand what's happening. So the first thing is to empower yourself, to get in the driver's seat, to speak up. Don't be afraid to say, I don't understand what's happening. Don't be afraid to say, I need somebody else to come in here to take notes with me because I just have all these thoughts in my head. Don't be afraid to say

that's not what I want for myself. What are the other options, right? And I think that might be it. One of the things that we saw in that study that I let with ‘For The Breast of Us’ is that when minority women, so non-white women, the study was about women of color. So black, Asian, Latina, specific islander, women of color collectively, versus their experiences of white women as they navigate the conversation of clinical trials. And one of the things that we saw in that study was that when women of color encountered barriers

resources, they would stop. They would assume that it wasn't accessible to them. White women were encountering barriers and they were starting to spend their time, but okay, I can get a car, I can figure this out. And it's just very different experiences. And so in these conversations, it is so important that providers, our care team, they are forthcoming with information. They are forthcoming with resources. Like it's important for patients to speak up, it's also important for providers to just offer.

and to have a good awareness. And then I will say again, it's so important to find community, whether it's age specific, stage specific, whatever it is, I think it's important to have community as you navigate this, especially for the younger survivors. It can be very isolating to go into cancer centers where everyone's a lot older than you. So I think community is so important as you navigate this journey.

Alyssa McManamon (21:29.006)

Yeah, no, I think all those points are so well made and make a ton of sense just listening to you. Most of us are not well trained in how to say no. And so one thing you said was...

like, “no, this isn't going to work for me.” Or you're trying to language, right, around a no. And I think giving people like almost expressed permission that we're going to be talking about a lot of things today. And some things might be a no for you. And if it is, we might still say you should really consider it, but we need to be able to hear your no. So you're allowed to say no in this room. I mean, I tell, you know, I think that's the expressed permission of

Jasmine Souers (22:19.245)

Yes!

Alyssa McManamon (22:23.262)

Like not just, okay, there's going to be terminology that is confusing. And we forget that we say things that you don't understand. Like earlier in this interview, you said, you know, YSC, I was educated by a patient, a young woman of color who was misdiagnosed with her breast cancer around 28, you know, and came to me years later in survivorship. And, but she is the one who told me what YSC was. And it's not Young Survivors Coalition. It's Young Survival Coalition. You know, it's like.

Jasmine Souers (22:34.035)

I'm sorry.

Alyssa McManamon (22:51.586)

But you said YSC and I thought, okay, I have to tell people what that is. But in a doctor's office, that's happening like 24/7, all the acronyms and everything else. And so even at the beginning of a conversation saying, I'm gonna do my best to explain this to you. But if there's anything that I say that doesn't make sense, just stop me. You know, like that permission to just stop me, the permission that you can say no. So I appreciate everything you said.

Jasmine Souers (23:14.639)

No, that is such a great point and thank you for catching that because to your point like I know the things that I guess What you guys feel right? Like I know it's so much talk about it so much that I'm like I throughout the acronyms I think a great example of this. Um, two is that my grandmother has been living with metastatic breast cancer. She was diagnosed the third time a couple years after I was um a couple years after I was and she was no evidence of disease for the last five or six years this last summer shadow progression and um I was the advocate in my family, like guys, I think we're missing something

what the progression was, was kind of pushed off as old people problems. And then they realized later that it was an actual metastasis. When we had this appointment with the doctor, because my grandmother's older.

If she's not in chemo, hasn't been in chemo, we had to like approach this conversation very sensitively because suddenly we're gonna say like, you have cancer again is what it feels like, right? Because she's like, I'm not really in treatment. And so I remember trying to talk to the doctor in code while we were in the room with them. And I'm like, hey, start from the beginning about the NBC because...

They don't really understand what that means. And when I tell you, like, he just did such a phenomenal job explaining to them. So years ago, this is what happening, and now this is what happened. And when he left, my mom and I both were like, thank you so much just for taking the time to slow down and to explain this to them in a way that they can appreciate. Like, that was just such an amazing moment. But it was something that we had to like, hey.

We need, we're meeting you, meet us on the same level, right? We really need this from you. And he absolutely did. And that was amazing. It was so helpful for us.

Alyssa McManamon (24:57.738)

That's a beautiful example of advocacy for caregiver, you know, caregiver advocacy. You and your mom were there, like, you know, part of the team essentially, and with him really worked together to give your grandmother the best experience. Like, I'm sure he appreciated, you know, having that prompt and you guys, you know, all together as a team really were getting her to the next place. And I think that's a beautiful example. 

Alyssa McManamon (25:22.094)

Do you feel like there's any other questions that we should ask or anything we haven't talked about that you think is important? Because I know we could talk for many more minutes, many more hours, but just to ask you open forum.

Jasmine Souers (25:33.727)

No, I just want to re-emphasize the importance that it's really us working together. It's patients and providers working together. It is leveling the playing field and understanding that we both come with knowledge and experiences and allowing those things to help drive the best outcomes for the best treatment options for. It's a teamwork thing. You don't have to put one person in charge because of the white coat. It's us working together to make this happen.

Alyssa McManamon (26:00.574)

Yeah, yeah, that makes me think of that saying teamwork makes the dream work, you know, and I learned that from a teacher. It's like, you know, and practice makes progress. It's like these teachers, they've got it straight. We're going to make mistakes. Let's just practice and see what happens, you know. So well, thanks Jasmine so much for returning to the podcast to provide insight into how cancer care teams really can ensure they're keeping the person at the core of the treatment plan as we go forward. And

Alyssa McManamon (26:26.978)

Thanks to everybody for listening to How Healing Works and stay tuned for the next episode.

Jasmine Souers (26:31.059)

Thank you.