Leslie Lake is a blood clot survivor having suffered a bi-lateral pulmonary embolism in June 2018. Leaving the hospital with little information about blood clots and her condition, Leslie found her way to the National Blood Clot Alliance “NBCA”. Realizing how many people experience a similar situation, and how few resources are available to them, Leslie joined the NBCA Board of Directors to advocate for others. She is currently the Volunteer President of NBCA. Leslie is the Co-Founder of Invus Financial Advisors, a boutique investment firm where she manages the hedge fund assets. She resides in NYC with her partner Michael and their fur baby, Sophie.
Dr. Rachel Rosovsky, MD, MPH, board-certified hematologist at Massachusetts General Hospital (MGH), provides clinical care full-time, supervises trainees and conducts research in area of thrombosis and hemostasis. She is Associate Professor of Medicine at Harvard Medical School (HMS), Director of Thrombosis Research in Division of Hematology and Co-Chair of MGH’s Thrombosis Committee. She earned her undergraduate degree from University of Pennsylvania, medical degree from HMS and Master’s in Public Health from Harvard School of Public Health. She completed residency at Brigham and Women’s Hospital and fellowship at Dana Farber Cancer Institute/MGH. Dr. Rosovsky is one of the founders and President-Elect of Pulmonary Embolism Response Team (PERT) Consortium and creator/director of PERT multidisciplinary follow up clinic at MGH. She is on Executive Committee for Venous thromboEmbolism Network US (VENUS) and she serves on the Committee on Quality for the American Society of Hematology (ASH). She has collaborated worldwide with researchers on risks, diagnosis and treatment of venous thromboembolism and she has published widely and presented at national and international scientific conferences in these areas. Through lecturing, research, and written works, she has sought to improve care of patients with VTE and advance understanding and treatment of this medical condition for over 15 years.
In this podcast, Leslie Lake and Dr. Rachel Rosovsky talk with Helen Osborne about:
- Collaborations between physicians and patients and how these benefit patients, providers, and the public.
- Leslie’s and Rachel’s joint effort to promote an understanding of venous thromboembolism and improve patient care.
- The importance of addressing racial and gender disparities,.
Music by Skilsel from Pixabay.
Producer and audio editor: Clair Morgan
Transcript:
HELEN: Welcome to Talking About Blood. I’m Helen Osborne, host of this podcast series and a member of the advisory board for The Blood Project. I also produce and host my own podcast series about many aspects of health communication, and it’s called Health Literacy Out Loud. The Blood Project’s website includes a lot of important information about many aspects of blood. This not only includes information about science and medicine, but also the people who are doing this work.
Today I’m talking with two guests who, separately and together, teach and raise awareness about blood clots. Leslie Lake is a blood clot survivor. After suffering a bilateral pulmonary embolism in the year 2018, Leslie left the hospital with little information about blood clots and her condition. She later found her way to the National Blood Clot Alliance, or NBCA, and realized she was not the only patient in this situation. Leslie now serves as NBCA’s volunteer President.
Our other guest is Dr. Rachel Rosovsky, who is a board certified hematologist at the Massachusetts General Hospital, where she provides clinical care, supervises trainees, and conducts research about thrombosis and hemostasis. Among her many accomplishments, Rachel is President-Elect of the Pulmonary Embolism Response Team Consortium, or PERT, P-E-R-T. Rachel’s ongoing goal is to advance the understanding of venous thromboembolism and improve patient care. Together and separately, but we’re talking about together mostly, Leslie and Rachel bring the patient and provider perspective as they educate and teach others about blood clots. Welcome to you both.
RACHEL: Thank you.
LESLIE: Thank you. Delighted to be here.
HELEN: So let’s get this story started. You are working together. I don’t know, I don’t want to violate any privacy, but I don’t think you are the doctor of Leslie. I think you’re just a blood specialist doctor and a patient. I’m not minimizing that, but you’ve gotten to know each other as colleagues and peers. Tell us each a little bit about how you got to start this work together because I really want to focus on your collaboration, which is amazing.
LESLIE: Great. So I’ll jump in first. This is Leslie. Thanks, Helen, for your question or your comments. Gosh, I met Dr. Rosovsky, who we now refer to as Rachel, which is different unto itself in most patient-doctor relationships, probably a year and a half actually after I’d had my pulmonary embolism. And I saw her speaking at a conference and was super impressed with her and thought, I need to know this lady, and sent her an email and thought, oh, she’s going to be way too busy to talk to a patient that she’s not even treating. And said, “Hey, if you’re ever in New York,” because she’s in Boston, I’m in New York, “would love to get together and have breakfast.” And lo and behold, she responded, and we got together and had breakfast and she came back to my office and we’ve been talking ever since.
HELEN: And did you just tell her you wanted to talk with her about the patient perspective or were you talking about you’re a great speaker, you’re amazing, and how did you approach that so she actually answered your email? Other than I know you invited her to a really good breakfast, but other than that.
RACHEL: That is true.
LESLIE: Yes, it was a Four Seasons actually. I had to make it enticing. I couldn’t say, “Hey, do you just want to have breakfast with me?” So actually, Rachel had and does work with several members of our medical and scientific advisory board council at NBCA. And so obviously at this point I was a board member and introduced myself, and she had given a talk and I found it interesting and thought, gee, I’d like to meet her and see if there’s an opportunity to expand my knowledge and-
HELEN: Thank you.
LESLIE: … see if we could get her involved with some-
HELEN: Rachel.
LESLIE: … activities at NBCA.
HELEN: … tell us about you. Why did you even respond to that email of Leslie’s and what happened during that breakfast that you two are now a team?
RACHEL: Well, I would say anybody that’s going to reach out to me and wants to talk about blood clots and in any way wants to try to move the field forward, I’m going to pay attention to that. I had already been a member of the National Blood Clot Alliance, and so I knew NBCA and of course I’m going to say yes. Well, first of all, she invited me to Four Seasons. Not only that, but they had a machine that made cappuccinos with your face on it, so that was fun. That’s obviously not the reason I went, but I was immediately drawn by Leslie’s energy and passion towards this. I treat thousands of patients with blood clots, and people have different reactions to having a blood clot and sometimes it does completely change their lives where they feel like, oh my gosh, I’ve been given a second chance.
Leslie has taken this on as her mission, thankfully, because I think she’s made great strides in this space. So I was drawn by her energy and excitement and I think we’re very similar in that way. And I just realized there were so many ideas that we came up with together and thought, well, we could do so much together.
HELEN: That’s what I want to hear about now. So we heard about you separately, we heard about the origin story. Tell us more about the together. What kind of work are you doing together?
LESLIE: So our first project was actually having our faces together on cappuccino in the foam at the Four Seasons, and we were successful with that. In fact, I think I still have a picture of it. As we really started to share our stories at each respective organization and talk about things we’re working on, one of the things I said to Rachel was, and I experienced this firsthand, is how many patients I was noticing were talking about them suffering from PTSD or mental health actually after they had had their blood clot. And we realized that there’s almost no work done on this issue. At least at that time, there wasn’t any work done on this issue. And she’s like, “Yeah, I noticed it also,” and that became the impetus of our first project.
HELEN: And now you say this issue, you were very specific about a diagnosis of PTSD. Does that extend to the greater issues of mental health or is it very specific to PTSD after being diagnosed with this life-altering disease?
LESLIE: Well, we’re speaking of it, and when I speak about it personally, it’s in relation to having had a blood clot. Me having had a pulmonary embolism, I really struggled with the mental health side of the equation that went on much longer than the physical impact of the [inaudible].
HELEN: Rachel, what was it like for you to be hearing this? Is this something you knew? Is this unique to Leslie or is this a much bigger issue?
RACHEL: So I think it’s a much bigger issue. As a physician taking care of patients with blood clots, obviously the first thing we want to do is make sure people don’t die of their blood clot. That’s really important. And then we’re putting them on a blood thinner, so we want to make sure that they don’t bleed. But then the short and longer term consequences of having a blood clot after that, we don’t do a good job, we meaning the medical community, of really investigating them. I think that’s a huge gap. And so what I started noticing, I always ask my patients a litany of questions on how they’re doing, and I always ask, do you have any history, depression, anxiety? And people would say yes or no. But there was a particular patient one day who told me that she was really struggling and even thinking about ending her life.
And it just hit me that I thought, wow, this is really having much more of a significant effect on people than I am even realizing. So luckily I had the resources to help this woman, but I had been talking with Leslie, and the National Buck Alliance has I think 3 million people visit their website.
HELEN: Okay, it’s huge.
RACHEL: We have to investigate this. This is really an underappreciated, under-reported, understudied issue, this post-PE syndrome, and it can be lots of different things. And it’s psychological, it’s quality of life, it’s functional status, it’s pain, it’s anxiety, it’s PTSD. If you look at the literature, it’s very scant and it’s mostly qualitative of 10, 20, 30 patients that were interviewed. No one’s done a large scale really delve into this. And so we took 12 validated surveys, surveys that have already been validated as being able to be reflective of what we are measuring. We put them on the website. I’m sure there’s providers and patients that listen to this, but when you do survey work, you’re pretty excited if a few hundred people take your survey.
HELEN: Right. And I just want to put this into context before you put it there. This survey is really looking at that post-PE, pulmonary embolism, syndrome as you phrased it. I didn’t know if that was even a known term before that, but that’s what your survey was about?
RACHEL: So the survey was actually looking at lots of different issues after a blood clot, so it’s pain and anxiety and PTSD and depression and quality of life and functional status. So these surveys investigating these types of issues are out there. No one has ever put them all together in one spot for patients to take. And in fact, Bill Robertson, who works at the NBCA, came up with the name, which is brilliant, which was CLUES which stands for a critical look at understanding the emotional suffering of blood clot survivors.
HELEN: Wow, okay.
RACHEL: And so-
HELEN: So we have a name for that. That’s wonderful. A mnemonic for it. Yeah. So I interrupted you when you were talking about, you said when most people know or scientists and researchers would know, you put out a survey and you’re happy if you get a couple of hundred responses.
RACHEL: Yeah-
HELEN: Oh, ok.
RACHEL: … [inaudible 00:10:46] people. We put this survey out-
HELEN: Bring us along in the story. Yeah, what happened?
RACHEL: We put the survey out, and within 24 hours, 650 people had taken this survey.
HELEN: Oh my goodness.
RACHEL: And so Leslie and I realized, oh my goodness, this really is so much bigger than we even thought. And so it really is speaking to a unmet need, really an unmet need. And so the exciting thing about this is we had over 3000 people take this survey.
HELEN: Wow.
RACHEL: It is the largest collection of surveys really aimed at investigating the degree of all of these long-term complications: shortness of breath, pain and anxiety, depression, PTSD, post-thrombotic syndrome in patients that have had a blood clot, and its impact on their functional outcomes and health-related quality of life. And we’ve actually now convened an international group of people and we’re starting to analyze these surveys. And I really think that the results of this are going to help us understand how these issues impact patients, and it’s going to help us guide future patient care, education, and research. So this is a goldmine, and it would not have happened without this collaboration.
HELEN: Wow. I guess I need to find another word, but in the meantime, you each are learning a lot about this. There’s a lot to be learning and you need to do all your analyzing and all of that, and even internationally. What are you doing in the meantime till all that happens and you as a patient and a patient advocate, are you doing it? And with you, as a physician and a researcher, what are you separately doing with what you’re learning? Or is all your work combined together at this point?
LESLIE: Yeah, so just separately, I’ll take the first crack at this from the NBCA standpoint. So look, I was not unique to what I was experiencing, and you referenced the 3 million people that come to NBCA. We have a very active patient to patient or peer to peer group where patients come in, they ask questions, they talk to each other that we administer. And we were just seeing a high number of these folks commenting on the mental health issues that they were having, the PTSD, after their blood clot. And so the first thing we did is we wanted to normalize this. This is an ailment similar to you’re on a blood thinner and maybe you cut yourself and you bleed. This is part of the process, and so just normalizing it was the first thing. It’s okay to discuss it. It’s normal that you experience it. We had a very high percentage of people, I think it was 97% said that they were suffering the complications of this.
And then on the NBCA side, we did two things. One was we wanted to create material for the patient, and in particular the newly diagnosed patient, what you’ll experience and things that you should be aware of, the questions you should ask your doctor. And one of the things that we included for the first time ever was the discussion around PTSD and mental health related to your blood clot and giving them tools that they needed. And then the second piece that we focused on was really building upon the relationship with Rachel and informing other clinicians about this and making them aware so that as you’re thinking about treating the patient, don’t just treat the acute. Rachel’s right. The first thing that they want to do is basically make sure you don’t die and save your life. But once we’re kind of past that point, introducing the, “Hey, are you okay? And do you need any help to be okay?” And so normalizing the conversation on the clinical side too.
HELEN: Thank you. Wow. Making a profound difference. Rachel, what difference did this make in your practice?
RACHEL: Yeah, so two things, and first of all, I will just say that we’ve done a number of webinars that people can go to the National Blood Clot Alliance and hear the webinars. In fact, we’re doing one on Monday. I don’t know when this is being recorded, so you might want to take that part out, but…
HELEN: Okay, maybe we’ll have that link in your information on The Blood Project.
RACHEL: And so there’s a few things. One is, as you mentioned, I’m the President-Elect for the Pulmonary Embolus Response Team Consortium, so PERT. So this started at Mass General in 2012. It started after a pregnant woman came in had a life-threatening PE, and her provider at that time was Ken Rosenfield. And he got a lot of different specialists together to try to figure out how to save this woman’s life, and realized that this is a really great way to think about treating PE. If you think about strokes, a neurologist is called. You think about a heart attack, a cardiologist is called. But when you think about pulmonary embolism, it crosses all different specialties: pulmonologists, cardiologists, interventionalists, hematologists. It involves a lot of people. Emergency room because most of the time people are in the emergency room. And so Ken came up with this idea to have this multidisciplinary approach.
And so at our hospital, when somebody came in with a PE, they used to be treated based on which specialist was called, and so that was really the impetus behind this. And so part of the thing, a part of what we’ve done with the pulmonary embolism response team is we created something called PERC, which is the Pulmonary Embolism Research Collaborative. And this was a collaboration with physicians, industry, patients, patient advocacy groups, healthcare organizations, and the US Food and Drug Administration. And we came together, this was about a two plus year project, and Leslie was involved. She was one of the patient representatives. And the
goal was to advance the care and improve outcomes for patients with PE. And we came together to explore gaps in how we recognize, diagnose, and treat PE. And one of the things that we thought about was we’re lacking in this area of this post-PE and of these kind of long-term consequences.
So we’ve come together and actually written a paper, which is in the process of being published where it’s really going to inform healthcare providers and improve future care. And one of the working groups was focused solely on what are these questions that we need to ask our patients, these quality of life questions – the pain, anxiety, depression, shortness of breath – and then what do we do when we get those answers? So that’s one.
And then the second one that I was able to work on was something, there’s something called the International Consortium for Health Outcomes Measures. This was spearheaded by Eric Clark in the Netherlands, and he brought together 20 plus experts from around the world where we met monthly for a year. And by using evidence-based medicine, integrating patient values, best available evidence, and medical experts, we developed consensus recommendations to standardize a minimum set of outcomes that are easy to use, broadly applicable, to really cover what we thought was the most important aspects of thrombosis treatment and the clinical course that matters most to patients and healthcare professionals such as quality of life, functional status, psychological wellbeing, satisfaction with treatment, changes in life view. And this has also been published and is on the website, and we are hoping that this is really adopted by all providers when they’re thinking about how to care for patients. So I think the two things that’s really important is that we’ve started to ask our patients and that we need to incorporate these outcomes into everything we’re doing.
HELEN: Okay, thank you both. I guess I need a new word. I’m coming up with awesome. This is awesome. This is also huge. You’re talking about making a difference with big numbers of people. Do you each have a story on a much smaller scale? And for our listeners who maybe just want to make things a little bit better today, whether they are patients or providers or someone who is thinking about going into the science, tell us a very mini story of how your collaboration is making a difference on a personal day-to-day basis.
RACHEL: Wait, I’m sorry. I’m not sure I understand the question. Is it a personal story that I have a patient or a personal story-
HELEN: Any way. So you’ve done this big scale. I’m just thinking of listeners who might be going, “That’s amazing what they did, but I’m not at that level. I’m not going to be doing that, at least right now. That’s something for me to aspire to. What can I do today to make it better from whatever my perspective is?”
RACHEL: So I would say a few things. One is for providers to listen to their patients. The patients know their bodies better than anybody else. And to ask the question, how are you doing? And to specifically ask about the mental status, the quality of life, how are you doing? Are you able to do what you used to do? What’s holding you back? How is this affecting you personally, mentally, your relationships, your job? So asking the question, validating their answer. I can’t tell you how many people, when I ask that question, they completely break down. And just to normalize it and say, you’re not alone. This is actually a real problem. We haven’t done a great job of studying it. I’m so glad you shared that with me. I have some resources for you if you want them. And so just making that available, just asking the question.
And I think from the patient side is not to be afraid to tell your physician, or your provider, I should say, who’s ever seeing you, that you are having these. People are sometimes afraid. I think in the past there’s been a lot of stigma with mental health issues. I think that that doesn’t exist anymore and it shouldn’t exist anymore, and I’m hoping that patients feel more comfortable. For example, when I first started, I never used to ask patients how much they paid for their drugs because I figured that if they were having a hard time, they would tell me. And I realized that people don’t tell you that. I feel like this is not the same thing, but if we don’t ask our patients, we’re not going to hear about it. And if the patients are not telling us, we’re not going to hear about it, so I think that has to be key.
And you don’t have to be on a clinical trial. You don’t have to be running this or running that. Everything that I do and all of the studies I ever pursue or any of the investigations, it all comes from my patients. Every question I end up asking and exploring, it’s from the patients, and I’m so honored and privileged to be able to work and take care of patients where they really open up and share with me their struggles.
HELEN: I hear that. I hear that in your voice, in your story, in your commitment. Leslie, how are you using this collaboration or what you’ve learned on a day-to-day basis?
LESLIE: Yeah, so CLUES actually was one of the reasons why we started something called PEP, which stands for patients educating patients, because again, we’re interacting with the patient in a different way than Rachel is on a day-to-day basis. And sometimes you’re more inclined to share things with somebody who has experienced the same thing that you have. And so we would see these issues that they were dealing with, and we decided to start something called PEP, again which stands for Patients Educating Patients. And we wanted to take a topic that was really important to the patient community and educate them, again, normalize it, give them the tools and the words for them to go and speak to their clinicians about.
And one of the first educational events we had for PEP was actually around CLUES and mental health awareness and vis-a-vis blood clots, and we invite the clinician into our house so they can hear directly from the patient community. And Rachel was the first clinician that we actually invited to participate, and it was on PTSD and mental health awareness.
HELEN: Oh my goodness.
LESLIE: We had 650 questions that were sent to us in advance, which just tells you, A, what a big deal this is. But B, we had opened a door to make them feel comfortable and strong enough to ask these questions, and so-
HELEN: It’s okay. I get the whole sense, it seems like it just makes a difference-
LESLIE: But I’m talking about about a group of patients that came forward and who never would’ve talked about this, who sometimes it’s hard to talk to a family member or a friend, but here they’re amongst peers and they’re with a clinician who is being led by patients, but they’re with a clinician who embraces the topic. And so I think this has just helped tremendously. And it didn’t stop with this one topic. We do this every single month and we’re fortunate that we can bring these topics to the forefront.
RACHEL: I will just tell you, I had three patients today, three new patients. Well, I had more than that. And all of them had issues, and I invited them to come to the webinar on Monday. They all wrote it down. And I think it’s going to really help them to hear from other people, not just me and other patients, that this is happening. And so it’s an issue that we’re addressing. And I think doing this together, I really think it’s opened this door up. Yeah, and I would say that the other thing I did want to mention is that for clinicians that are interested in learning more about ways to treat PEP, they can go to the pertconsortium.org. But I’ll also say that I have loved getting to know Leslie, and I think she has taken what’s happened to her. And I think I’ve mentioned, it’s like a tsunami, said in a good way.
HELEN: But in a good way.
RACHEL: She is so inspiring, and it’s a little bit dangerous when we get together because we come up with so many ideas. It’s like, wait, wait, wait, wait, wait.
HELEN: So this is just the early chapters of an ongoing story. Individually, together, you’re amazing. And I’m glad you shared what you’ve done and learned on the big picture and also the day-to-day. The groups we talked about, and our listeners can be seasoned professionals doing this a long time. I think you’ve talked about that. It can be patients, people who are living with this and their day-to-day life. The group we haven’t addressed, and it’s a good place to bring this forward, are those in their early parts of their careers. Maybe they’re thinking of going into the sciences, maybe they’re early in one of the health professions. What would you want them to know about collaboration? I’m not talking about blood clots, but I’m talking about the collaboration that you two have formed. That type of collaboration.
LESLIE: So maybe I’ll take this one first. So at the National Blood Clot Alliance, we actually created something called CERT. We love our acronyms in the healthcare-
HELEN: You do. You like your coffee with your pictures on the top and you like your acronyms.
LESLIE: Exactly. I like foam. And it stands for Counsel of Emerging Researchers and Thrombosis, because we understand how important it is to have the next generation of Rachels coming up, their learning curve. And what we found is that we have a great group of clinicians that are working with us who really embrace working with patients. It opens their eyes to many issues that they normally would not think about. They think it makes them better clinicians, they ask better questions. They think about treating the whole patient as opposed to acute situation. And we’re doing more and more projects together, which is exciting. So this shared decision-making between clinician and patients usually results in better outcomes for the patients.
HELEN: Thank you.
LESLIE: And we think it makes for better and more compassionate clinicians.
HELEN: Do you agree, Rachel?
RACHEL: Well, absolutely. And I would add to that, and I would say really the trainees, the people that are thinking about medical score in medical school and the residency, fellowship, whatever, they are the future of this. It’s not going to be me, it’s not going to be Leslie. It’s going to be them. And so I agree with what Leslie’s saying. There’s two things that the pulmonary embolism response team has done. The consortium, that is one. We have something called Women As One. And we’re trying to encourage women to network, learn how to network and become leaders in this field. And it’s called the Climb
Program. And then we also have a PERT bootcamp where trainees, medical students, residents, fellows can come and really do hands-on types things to learn about how to treat pulmonary embolism as well as kind of all the medical part.
But I also think it’s really important for people that are starting out in their career to network, and they just need to make sure that they have a strong mentor, that they have colleagues, and not be afraid to go up to somebody that just gave a speech at a national meeting and say, “Look, I’m interested in this. How can I get involved?” So really taking that on. And I also think, again, going back to PERT, the consortium we have, there’s PERTs all over the world now, and we have collaborations with all people all over the world. And so really anything any trainee wants to get involved in that has to do with PE, they can do it. And so I think there’s lots of opportunities.
And then just at their own institution, if they can find people that are doing what they’re doing, if they can’t find it at their institution, if they read an article and reach out to the first author. I can’t tell you how many people will reach out to me and say, “Oh, I’m a medical student over here. I’m interested in doing this.” I just actually got an email from somebody today who’s finishing her fellowship and starting junior faculty at another institution. She wants to do PE, she wants to start a PERT. She’s like, “Can you meet me?” And I said, “Absolutely. Let’s meet next week.” So it really is-
HELEN: That’s great.
RACHEL: And it’s up to the people that are already far along in their career to actually bring those people up. That’s also really important.
HELEN: Good. Thank you. Boy, your experiences, your wisdom, your knowledge. Is infectious a good term for a medical term? But what you’re bringing to this is amazing, both as individuals and collectively. So I thank you so, so much for sharing your stories on talking about blood.
RACHEL: Helen, can we add one more thing? And Leslie or I can talk about this, and I think there are certain populations that are more vulnerable. And we know that there are certain populations that are at higher risk of getting blood clots, and that could be a whole podcast on their own. But I do want to mention in particular disparities, racial and gender disparities, and I think these need to be addressed. I think there is definitely huge disparities in terms of race. We know that there was a recent study that was done which showed Black women and Black men had a twofold, higher increased risk of mortality related to their blood clots or from their blood clots. So I think as a medical community, and we also know pregnancy is a big risk factor for clotting, and we know Black women in particular are three to five, four times more likely to die from pregnancy related complications such as TE than white women.
So I think this is a challenge and much-needed opportunity. I think we have to identify the underlying drivers of these different mortality trends and persistently observe disparities in order to mitigate the burden of PE-related mortality and particularly preventing PE deaths. And I think as a medical community, we need to do a lot more.
LESLIE: Absolutely. We have to do a much better job about this. I mean, we’re seeing the disparities talking about maternal health. So this is being recorded during national postpartum week, and actually I think this is the first year for what’s called BIPOC, which stands for Black Indigenous people of color, where we’re trying to bring awareness to the maternal health crisis in the United States. And unfortunately, blood clots play a very, very strong role there, so making people aware of that. This is preventable. This is highly, highly preventable, but understanding the signs and symptoms and educating people about this. Rachel’s spot on. The numbers are much worse for the Black community, both in terms of incidence level, but mortality as well. And so educating everybody and making sure that access to information is uniform is really critical.
RACHEL: I would just say we need to recognize these inequities. We need to raise awareness. We need to have better knowledge, equal representation, access to care. That is the only way we’re going to improve care and outcomes for vulnerable populations.
HELEN: Thank you. It sounds like your work is continuing. You’ve given us a strong base of information. You’re building on that collective together and realizing how strong that is together, and you are already seeing what wonderful things can happen in the future.
LESLIE: Patients want to be treated by people who look like them and have shared experiences with them. So it’s really important though. You had asked about young clinicians making clinicians aware of the fact that if you’re a Black patient, you might want to be treated by a Black clinician, and everybody should have that right to representation. So as we learn more, these are the type of things that we want to share with the clinical community.
HELEN: You give us so much to think about. Thank you both so much for being guests on Talking About Blood.
RACHEL: Thank you, Helen. Really, a wonderful opportunity. Thanks for inviting us.
LESLIE: Thank you. This is such a privilege.
HELEN: As we just heard from Leslie Lake and Dr. Rachel Rosovsky, it’s important to consider science, medicine, from many perspectives: the patient perspective, the provider perspective, the researcher perspective, and then people working together to do that work. That seems to be really where the beauty and advances happen. To learn more about The Blood Project and explore its many resources for professionals, trainees, and patients, go to thebloodproject.com. I also invite you to listen to my other podcast series about health communication. It’s at healthliteracyoutloud.com. Please help spread the word about this podcast series and The Blood Project. Thank you for listening. Until next time, I’m Helen Osborne.