The Power of Shared Data

[00:00:00] Adam Walker: Support for The Real Pink Podcast comes from Merck.

[00:00:06] From Susan G. Komen, this is Real Pink, A podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.

[00:00:19] Today we are excited to introduce ShareForCures, Komen’s groundbreaking research initiative that puts patients at the center of scientific breakthroughs. We’ll explore how ShareForCures is making waves by harnessing the power of data, empowering patients to share their health information to expedite the search for cures and better treatments for diseases like breast cancer that touch us all. Here today to tell us more about this extraordinary platform, why they are participants and the importance of diversity in research are ShareForCures Chief Scientist Dr. Melissa Bondy and two-time breast cancer survivor and Komen Scholar Dr. Barbara Segarra-Vasquez. Ladies, welcome to the show!

[00:01:02] Dr. Barbara Segarra: Thank you.

[00:01:02] Dr. Melissa Bondy: Thank you.

[00:01:03] Adam Walker: Well, I’m very excited to learn about this. I don’t know anything about it, so we’re all learning together here as a community. Let’s talk about it. So, we’re excited to talk about ShareForCures with our Real Pink listeners for the first time today. Dr. Bondy, to start, can you give us an overview of what ShareForCures is and what it aims to accomplish?

[00:01:23] Dr. Melissa Bondy: Sure. I’m really happy to do that. And ShareForCures- we started to initiate this study about four years ago. It’s been in the making where we’re, we’ve really included the communities and gotten feedback about how do we build a registry that, as you said, is going to help find cures and include people who are breast cancer survivors in our study from diverse backgrounds so that we can share data, get as much comprehensive types of data as we can that would benefit both the research community as well as the patients. And, you know, it’s really a partnership of how we develop this research registry to get lots of people to get involved and participate in this partnership with us.

[00:02:08] Adam Walker: And Dr. Bondy, just to follow up on that, like who can sign up for share for, and what does it look like to participate?

[00:02:14] Dr. Melissa Bondy: Well, the website is up and running and it would be anybody who is a breast cancer survivor, whether you’re a male or a female, anybody who’s had breast cancer is eligible to participate in this study.

[00:02:28] We have a series of questions that ask about their demographics, that ask a little bit about their… some of their background and there’s a few other more detailed types of questions on quality of life and a few other types of things. And then we ask people if they would share their medical records with us so we can combine them.

[00:02:48] They could then get access to a combined medical record of their own, which is an advantage to our participants. And we’re asking some of them as well to participate in providing a saliva sample so that we can start to do some of the genomics where we can learn more about their disease.

[00:03:07] Adam Walker: Oh, that’s fascinating. Okay. So Dr. Segarra, as a two-time breast cancer survivor, why are you participating? And why do you think other survivors should participate?

[00:03:20] Dr. Barbara Segarra: So, and I started participating as part of the outreach committee, and I think it’s important for the people to understand, as Dr. Bondy mentioned, that patients have been involved since the beginning of this concept.

[00:03:32] So we are, as patients, looking out for ourselves. Right? So what is important for patients? I also would like to participate because we, for many years, have seen that cancer is, breast cancer is very complicated. It’s not one disease, it’s a group of disease. It’s very different. It depends on, you know, the stages, the type, where you’re from and all those things.

[00:03:55] And unless we keep gathering information in order to come to better conclusions, it’s not going to happen. So ShareForCures gives that opportunity that my data is going to be compared to thousands and thousands of data. And maybe when you look at my data alone doesn’t say anything. But when you compare type of people who had the same cancer I did, or the same stage, then we’re going to start seeing things that will trigger new questions and hopefully new answers and new discoveries.

[00:04:24] Adam Walker: Did you have something you wanted to say, Dr. Bondy?

[00:04:28] Dr. Melissa Bondy: Yeah, I was going to say, one of the important things about this registry is that we engage many people from all over the country. Actually, what we didn’t say is that people have to be from the United States. Resident United States, Puerto Rico territories, but… so we can get access to their records and it would be easier for us to engage with with participants from the United States. But one of the other key features of this is that most research studies have had difficulty engaging diverse populations and the goal of our study and the registry is to engage these participants.

[00:05:09] Adam Walker: Right. So, so, and I appreciate you sharing that, Dr. Bondy. And so, Dr. Segarra, I wonder if you could talk a little bit more about why it’s so important to have diversity in these studies?

[00:05:20] Dr. Barbara Segarra: Yeah, and as Dr. Bondy mentioned, it is known that minority groups like Hispanic, Latinos and black community have not been as active in clinical trials as white people, right? And then when these people participate in clinical trials, they come to conclusions and it translated to the general community when we have not participated. So if we really want to get meaningful conclusions, we have to have a registry that really represents the US population. For example, we know that black woman die at a higher rate than white women from breast cancer.

[00:05:59] It’s 41% higher death rate than the common. So it is a problem, and maybe it’s related to genetics, but we don’t know because when we look at the studies, only 10% of minority population, including Latinos and Black, have participated in genetic and genomic studies. So, as Dr. Bondy mentioned, we are going to have that opportunity to really address this group, have them, invite them to participate, and have people that look like me participate and then gather that information. And I’m sure we’re going to have new discoveries that will help attack this disease.

[00:06:33] Adam Walker: I love that. I love that. And so, Dr. Sagarra, one more question for you sort of related to this. I understand that we’re going to be offering materials that are translated for participants that want to get involved. Can you talk a little bit about why that’s important?

[00:06:46] Dr. Barbara Segarra: Oh, that is huge. That is super important, right? Having translated material. There- if I go to Spanish, for example, there’s 62 million Hispanics living in the United States. It’s almost 20% of the population, and 99%- 71% of those Latinos or Hispanic. Speak other language than English at home so they feel comfortable speaking, especially Spanish, right? So we have seen in the literature says that a lot of… one of the barriers for Latinos to participate in clinical trials is the language. It’s not the, you know, cancer is complicated as it is, so not understanding what people are saying, and you can have a translator, but it’s not the same. I imagine when you travel to another country and you’re using your translator device, you’re always questioning, did he really understand what I’m saying? Right. So it’s the same with patients and I think we have to go with the patient are and this, you know, Latinos are not going to go away, they’re only increasing, their the fastest growing minority group. So I have been involved this in the beginning and I’ve been in Komen for many years and I’m the Spanish-speaking voice there, and I’m happy they do listen and they’re doing everything they can to really address that issue.

[00:08:00] Adam Walker: I love what you said, like we have to go where the patients are, and I feel like this project sort of gets to the more to the heart of that, right? And I really love that idea. Dr. Bondy, how will researchers access and use participant data to help find the cures and better treatments that we’re looking for?

[00:08:17] Dr. Melissa Bondy: So, as you know, we’re just starting to collect participants into this registry and we will have review processes of different research questions that people, that researchers would have to be able to access. We have committees that are trying to determine which projects would be interesting to researchers so that we can collect the appropriate data to make this exciting for researchers to have access to. We want to have data that they wouldn’t normally be able to collect on their own, that it would be something that would be added value to any research agenda that somebody might have.

[00:08:54] But remember, it’s called ShareForCures for a reason, and we want to make sure that the investigators are aligned with the aims of our proposed research and what we’re collecting. Yeah. So some people might have to get grants and things like that if they want to expand the the data that we are collecting so that it could be more enriched. But then once they are engaged in the research, they also have to share their data back so that it’s almost like a mushroom, so that we would have more data for others. So it’s hopefully that’s the way it’s going to work. So that’s what we planned.

[00:09:35] Adam Walker: And I want to make sure I’m understanding this correctly. So essentially, in patients sharing their data together and you being able to have this massive combined data set and ideally one that’s profoundly diverse and more representative of the population of the US. By doing that, you’ll be able to see more correlations and better understand how treatments are going to work among the entire population, rather than in just small subsets of populations that tend to be represented oftentimes in some of the clinical trials. Is that kinda an accurate

[00:10:05] representation? Exactly.

[00:10:05] Dr. Melissa Bondy: You got it right on. Dr. Segarra, do you have any response to that? I think he’s got it.

[00:10:11] Dr. Barbara Segarra: First off, for patients to understand. We have been – we are going to protect their data all the time. When we say we’re going to share the data, they’re not going to go, “Oh, this is Barbara Segarra, diagnosed at 42” with all these things, right?

[00:10:24] It will be will be a number and we’ll be Komen as a responsible entity for many years now. We’ll have that gatekeeper to know what you know, who’s going to access, how’s going to access. It’s not that, you know, add-on comes in and say, oh, can I see your data? It’s not going to be that way.

[00:10:43] So it’s reassuring for patients that it’s important and we share, you know, as civilians as we share our data all the time and we don’t know it, but this is for a good cause with the good guards. And to get the information, even in genetics, we saw that before. And when we look like, for example, they, I did my genetics and at once and there were a lot, what they call a variant of undefined clinical significance.

[00:11:08] They don’t know because the data they’re comparing it is all white, right? So maybe as a Latina there’s a a genetic or a genomic marker that is very significant for us, but we don’t have all that data together to come to that conclusion, right? They compare me to this data that only white people participated. So we don’t know I’m going to be, of all these genes or things like that we don’t know. And ShareForCures will have the opportunity to really have a group of people like me from my ancestry, to really compare and see what is important.

[00:11:43] Adam Walker: Yeah, and I appreciate you sharing that, you know, for my security-minded friends, just to reiterate that this is anonymous. So… you’re not sharing that, you’re sharing the data. But your name is not necessarily attached to it.

[00:11:55] Dr. Barbara Segarra: It’s not going to be with you, yes.

[00:11:57] Dr. Melissa Bondy: That was the important part of developing the study. We did lots of focus groups to talk about security, to talk about how, what people are willing to share, that they want to know what’s going on.

[00:12:07] So we’re planning to have a dashboard so that as Dr. Segarra aid, we would have the aggregate data and someone could. Have their own personal data on their own dashboard that could say, here’s how I compare in, you know, in the big picture to what the other participants look like. You know, so we’re going to make sure that not, you know, if somebody’s going to participate in the study, they want to participate and have something back.

[00:12:32] Not just, it’s because it’s all, they’re being altruistic, which is important and that’s what they are being to participate. But we want to make sure that our participants are getting something back through their engagement in this process and that they know what studies they would be participating in. So we will be in communication with them. We’ll tell them what’s going on, what are the new studies, asking them if they even want to participate. So all along we will continue to have communication and it’s not a one-way street.

[00:13:01] Dr. Barbara Segarra: And if I may… for example, when Dr. Bondy said we’re going to share information and it’s going to be organized. For a patient’s point of view it’s very important, right? Because we, I have a file this big after 20 years, and I’m going to be 20 years survivor in December. And in Puerto Rico, they gave us copy of our results since the beginning. So I have results from 2003 up to now 2023, right? But ShareForCures will have it in a way that I’m going to see where I have my scans, where’s my labs, where are my genetics?

[00:13:32] And it’s organized in a way that they can also get engaged because, for example, with Latinos, I see lack of knowledge or understanding of their own disease. So this will be an opportunity for them to really look at their data and if somebody asked, yeah, I have a stage 2B invasive ductal carcinoma and all these things, I’ve been doing this for 20 years, right? But most of the people don’t know, and this will be an opportunity for them to really access that.

[00:13:58] Adam Walker: Oh, that’s great. I love that. Well, so, so last question. This is this, first of all I love the project and what you’re working on. It’s so important. I see tremendous value in it. So thank you for that work. Last question. How can listeners learn more about ShareForCures and how can they get involved?

[00:14:15] Dr. Barbara Segarra: Well, we have a website through Komen’s website. Komen’s website can be complicated. But if you write, it’ll get you directly to the page where there’s all the information and explain. You can navigate, you can start looking at and as Dr. Bondy said, they first ask you some questions. So just getting in it doesn’t mean that you’re going to commit to participate. So I invite everybody to just look at it, learn a little bit more, there’s a line 800 number that you can call and ask more questions.

[00:14:51] People can reach out to you. They’re going to be examples. We have videos on YouTube explaining what it is, and if you still don’t understand, we’re all going to be available for that.

[00:15:02] Dr. Melissa Bondy: I think she got it nailed. And we’re going to have lots of other information as we move forward with the study and through Instagram and all of the social media platforms that people will be able to learn more at the runs at..

[00:15:15] You know, any time we can have contact with with potential participants, we will be there. Also in the, to the scientific community. We submitted a abstract to the San Antonio Breast Conference, which is the largest breast cancer conference in the world. And hopefully we will be presenting those data, you know, at least the beginnings of the, of how we started the study and some initial results that we have from our focus groups and things like that, and publications for the researchers to see.

[00:15:48] Adam Walker: Oh, that’s fantastic. Love that. Well, Dr. Bondy, Dr. Sagarra, thank you so much for the work you’re doing and thank you for joining us on the show today.

[00:15:57] Dr. Barbara Segarra: Thank you for having us.

[00:15:58] Dr. Melissa Bondy: Thanks for having us.

[00:16:08] Adam Walker: Thanks to Merck for supporting the Real Pink podcast.

[00:16:19] Thanks for listening to Real Pink, a weekly podcast by Susan G. Komen. For more episodes, visit And for more on breast cancer, visit Make sure to check out at Susan G. Komen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog