Episode Transcript
[00:00:02] Speaker A: Welcome to conversations with all of us, the show that explores the evolving world of health research and the role we can have in creating a healthier future for generations to come. I'm your host, Cheryl McLeod, Community engagement and communications manager for all of Us New England at Boston Medical Center. For this episode, we had the privilege of speaking to members of the community, all of us participants, and medical researchers, about how they feel about participating in health research. Their stories paint a picture that can help us understand how to keep our communities healthy. So tune in and listen to their stories. Now you taking part in health research is a gift we can give our communities and future generations this holiday season and beyond. Our participation can help fill the gaps that exist in health research. We can help researchers understand more about disease and in turn, create better care and treatment for generations to come. Just think of the Framingham Heart study, now celebrating its 75th year this fall. It may seem obvious to us today that when the study began, we didn't know that things like smoking, obesity, and high cholesterol contribute to heart disease and strokes. But because people shared their health information, some of them for decades, researchers were able to identify common characteristics and lifestyles that contribute to cardiovascular disease, things like the high blood pressure, dementia, and stroke. This helped researchers understand that these conditions were not just destined to happen because of old age. For this episode, we reached out to nine members of the community at events like the Making Strides Against Breast Cancer Walk in Boston, hosted by the American Cancer Society. We also spoke with three members of our all of us community advisory panel. We asked all of them if they would share their health stories, and we uncovered four common themes throughout our interviews. These stories are inspiring, and I'm excited to share them with you.
A common theme for many of our guests was the power that they felt their voices and participation had in improving the future of health research. Did you know that 80% of clinical trials are delayed or closed because of problems with recruitment or lack of participation? One thing that struck me when we were doing these interviews was how many people found participating in research a little scary, but also empowering. Contrary to historical ways of doing research, there is now a movement to recognize and partner with communities when developing research programs and clinical trials. This is called Communitybased Participatory Research. It means that research programs, like all of us, aim to include participants, but not only in the process of collecting their health stories and data. They include their voices in the design and operation of the research program for the benefit of everyone participating. This means it's not just the researchers and scientists who benefit. It's giving a voice to the participants and recognizing them as partners. Here's what our guests Destiny Harden, Amaya Biscayeno, and Pam Lauren had to say about the power of using their voices to advance health research.
[00:03:27] Speaker B: Hi, my name is Destiny Harden. I currently hope that people that are looking to get into research, especially minorities, look into their community advocates. Community advocates play a good role in your community to help you navigate the healthcare system, and they also help you to enter healthcare research if you're unsure of where you could go, what resources we have, and just how to get that access to be involved in research programs. Hi, my name is Amaya Viscayo. I feel as if research is important to society because it allows to a more progressive start and it allows us.
[00:04:04] Speaker C: To think deeper and to figure out.
[00:04:06] Speaker B: How we could better society as a whole. Not for just yourself, but for other people as well.
[00:04:12] Speaker D: Hi, I'm Pam. I'm a cat member of all of us New England and the national program. And I'm a writer and editor. I live in Hull, Massachusetts. Well, I've been misdiagnosed many times in some of the best hospitals, and I understand how it can happen. You look at something, you think you know it. You've seen the signs before. You may overlook other symptoms because you think you know what it is, except in the end, you don't. You didn't quite listen as well as you thought you did, and didn't second guess your assumptions.
Making snap judgments like this, acting out of preconceived notions and prejudices, has been repeatedly shown to have damaging consequences on health outcomes. Being white, wealthy, and a man likely means you haven't experienced this. After all, most research has been based on you, but most others most likely have experienced this as a woman and a short one.
Being heard literally means speaking up. Being my own health advocate, I can't imagine the challenges people of color, differently abled, differently sized, and others face. I know that when speaking up meant finding people who listen. And I found my way to excellent health care from doctors who listened, helped me on my way to better health. When I discovered that the overriding goal of the all of Us program is to hear from all of us, to be all inclusive, to listen to and include everybody, I knew that I wanted to be a part of it. When such a massive study wants to listen to us, to represent all of us with the understanding that the same treatments don't always work the same for everybody, and that this is human based research that doesn't take more than a blood sample, interesting surveys, and some information. I wanted to be a part of it. The impact of participating can help shed light for generations and generations. There are so many reasons I joined all of us, and I'm so glad I did.
[00:06:27] Speaker A: Another theme we uncovered during conversations with our guests was their hope that researchers may be able to make medical discoveries through studying our health information. Many medical discoveries are made possible by studying a person's DNA. A simple online search will show you how excited scientists are about the potential to make progress on conditions that can affect anyone, such as schizophrenia, Parkinson's disease, and multiple sclerosis. For example, in a recent study conducted by Harvard Medical School, researchers at Massachusetts General Hospital and Massachusetts Cyan Air, researchers reported on a newly discovered genetic variant that they think may help prevent the development of Alzheimer's one day. In another study published by the American Journal of Human Genetics, scientists also believe they've discovered something in people's genes that prevent statins, an anticholesterol drug taken by over 30 million people in the US from working correctly for some. Let me turn it to our guests, Carrie Madeiros, Tracy Lou Lewis, Julie McLean, Don Peters, and Tom Friar, who shared their personal experiences and what they hope for the future of health and medicine.
This is Kerry Madeiras.
[00:07:49] Speaker E: Research is important because I have so many friends and family who have been impacted by cancer, and the treatments have come so much further and we've learned so much about how cancer develops and how we can prevent it, and we just need to all work together to keep being part of that research so we can find more cures and have more survivors.
[00:08:11] Speaker F: Good morning. My name is Tracy Lewis. I am a proud member of Zeta Five beta sorority, Incorporated, the Boston chapter of Delta Omacron Zeta. I believe that research is important because without research, we would not be making strides in so many different diseases and other things that affect the community as a whole. There are so many things that go on in the world, from cancer to the common flu, that kill people on a daily basis. We would not have had the cure up of measles, mumps. Think about stuff like that from way back. My mom might not be here today if it wasn't for stuff like vaccines, which came about due to research. So I'm a proud advocate for research and I wouldn't be here personally without it. So it's awesome.
[00:09:02] Speaker C: My first name is Julie. I do believe in research. I think it's really important for several reasons. I think it's helping to find answers that maybe we don't have yet and gives people chances and I think that if you have that chance and you know what the opportunities are, you might be more willing to participate in the future.
[00:09:24] Speaker G: Hi, I'm Dawn Peters. I'm co founder of Lupus Lights New England, a support group that's part of the Lupus foundation of America Network. I'm also a community advisory board member and participant of all of Us New England. So living with a chronic illness like lupus can be a challenge. Since I was diagnosed with lupus, there have been many improvements to care that has been a direct result of health research.
So taking hydroxychloroquine shortly after lupus diagnosis because it protects the organs, for instance, or getting annual field vision scans. If you take hydroxychloroquine to make sure there's no toxic buildup in your eyes, there's been new drugs like Benlista and Cell set to treat lupus, a better understanding of higher risk for other diseases like heart disease, and medical evidence that shows those with chronic illness like lupus are more likely to have anxiety and depression. So these are all some of the direct results of health research that's important.
It's important for me to share my health story because I want people to know that living with a chronic illness like lupus doesn't mean your life is over for many. You can still go to school, you can work, have children, travel. If I can share my story and help someone else, that's a win. We like to say at our support group meetings, you can live well with lupus.
[00:10:52] Speaker H: Hi everyone. My name is Tom Friar. I'm part of the all of US advisory group and I wanted to just share with you a little bit about the reason why I started to become involved with all of us and then tell you why I'm still excited about it. You may or may not know that the US government is funding an effort to try to get 1 million Americans to donate their genomic background through blood samples or saliva. That will enable researchers to try to come up with solutions for diseases that we don't have a solution for today. And I recall when I was very, very young, polio was kind of like a pandemic for the. There wasn't any solution. And I just recall seeing little children in braces. And then Dr. Jonas Sawk, a medical researcher, came up with the vaccine for polio and virtually eradicated it. I think it's just about eradicated now. And I recall several years ago listening to someone from the National Institute of Health say that there are over 2000 diseases that we can today, medical science can today identify through your genomics whether you have a predisposition for it and those 2000 diseases we don't have a solution for. So it made me think, what can we do to try to help medical researchers come up with solutions for some of these debilitating diseases? So when all of us was introduced as a way for me to participate and share my information with medical researchers in the hopes that they're going to come up with some solutions for these diseases, I became excited and said, sign me up, I want to do it.
And I'm doing it primarily for my children and my grandchildren. I think that's the key for us as we think about medicine today. But still there are many, many people who aren't participating and many, many people who don't have solutions for their problems. And I think that that would be just something that would make me feel good and should make you feel good. And it's really easy.
You can go to your hospital that you participate in and they will take the sample there. They can take it along with a sample that you're already giving and your information is shared, it's totally secure. So I would urge all of you to become part of that group, which is, I think it's approaching a half a million now. And we really want people that cover every single spectrum of this great American country. We need underrepresented populations, we need young children, we need older people. So please think about becoming a part of all of us and help us and help your children and help your grandchildren.
[00:14:05] Speaker A: During our community conversations, we had the opportunity to speak with several researchers who shared their perspective on the importance of health research. At all of us, we like to say research is hope. New discoveries that we couldn't imagine before are giving us reason to hope for a better future for us all. And this is something researchers across the globe can agree on. Dr. Francis Collins, a former NIH director and a physician geneticist who discovered the genes associated with a number of diseases, once said, Many of today's health advances have stemmed from a long arc of discovery that begins with a strong, steady support for basic science. Here are a few more researcher perspectives. We spoke to researchers Sakshi Bubna and Dr. Andrea Merrill on why research and participation is important to the future of health and medicine. Here's what they had to say.
[00:15:11] Speaker B: Hi, I'm Sakshi. I study a lot of research papers. And reading those papers, I realized that a lot of people are underrepresented in a lot of studies, for example, a lot of rare diseases. We want more representation to understand the particular disease better. So we hope that through all of us, we get to study all of those communities and people are heard.
[00:15:38] Speaker C: Hi, I'm Dr. Andrea Merrill. I'm a breast cancer surgeon at Boston Medical Center.
And I recently discovered all of US research program who work at Boston Medical center and are trying to increase research in people of all races, colors, backgrounds, ethnicities, so we can get more information to help cure diseases. As a breast cancer surgeon, I do a lot of research myself in breast cancer, and our breast cancer center is involved with research. We find that oftentimes research is limited to certain populations, and so a lot of times that research really isn't generalizable to the rest of the population. And so I think it's important that we include everyone, so that when we get these really amazing results, we know that it applies to everyone being involved in the research. People tend to be hesitant sometimes about research and might be worried about what happens with their information. They might be worried about how they're treated if they don't do the research. I think it's important to ask questions, get all the information. You also don't have to make a decision right away. You can bring the pamphlets home, think about it. Talk to your doctors, talk to your family and friends. I think everyone doing research is really trying to do this for the good of people, and so we can learn more and cure more diseases. And I think being a part of research is really an amazing thing to do, helping probably yourself and also many other people.
[00:17:14] Speaker B: What was your first reaction when you heard about all of us and then.
[00:17:17] Speaker A: What made you decide to become a participant?
[00:17:20] Speaker C: I was really excited to learn that you offer genetic testing for a lot of common diseases for free.
Many times, insurance companies may not cover it, especially if you don't meet certain conditions. And so it's great to have access to that without having to pay out of pocket. At first, I was a little bit wary because they collect a lot of your information, and sometimes it's scary to know that people have access to that. But it is NIH funded, which is a special research program funded by their government. They really take care to protect your privacy, and their goal is really to improve health care for everyone.
[00:18:06] Speaker A: Our last theme we discovered during our community conversations was hesitancy about participating in research.
Participating in health research can be an uncomfortable experience to some people because of historical instances of mistreatment and structural inequities. There may also be hesitation because some communities haven't been actively asked to participate in research. A 2020 UK review of studies from around the world found that fear of testing new treatments and their possible side effects were the most common reasons given by patients for not wanting to participate in clinical trial resEarch. And among black and minority ethnic patients, distrust in research and medical professionals is also a common reason for not wanting to participate. Participating in health research doesn't have to be an intimidating experience. Clinical trials and modern research programs, like all of us, are committed to transparency, accountability, and ensuring that you are fully informed before deciding to participate. It's important to note that the choice to participate in any type of health research is a personal one that people should make willingly and without pressure from anyone else. We asked our guests, Jacqueline Tennyson Dixon, Kathy Lucas, Tracy, Lou Lewis, Don Peters, Tom Fryer, and Pam Loring, what they would say to anyone who may be hesitant to join a research program.
[00:19:35] Speaker C: Good morning.
[00:19:36] Speaker B: My name is Japan Tennis and Dixon. There's nothing to be scared about. It's best to know what's going on with your body.
[00:19:44] Speaker A: What's your health story?
[00:19:46] Speaker B: I'm a breast cancer survivor. Eleven years.
[00:19:49] Speaker A: Congratulations.
[00:19:50] Speaker B: And I have joined all of us at Boston Medical. Some women are scared to even know that they have cancer.
That's the thing. A lot of people are scared about it.
[00:20:01] Speaker A: Really?
[00:20:01] Speaker C: Yeah.
[00:20:02] Speaker A: Why?
[00:20:04] Speaker B: I don't know. They're just scared to know.
[00:20:06] Speaker A: How come you joined all of us?
[00:20:09] Speaker B: Because I'm a breast cancer survivor and already been through chemo, radiation and all of that. So ain't none for me to be scared of anymore.
[00:20:18] Speaker A: My name is Kathy Lucas.
[00:20:19] Speaker B: I'm the vice president of Lewin Lee sources for Plain Rich Park Casino. I am the past immediate president of Siomega chapter of Alpha Kappa Alpha sorority. I lost my mom to breast cancer about five years ago, and one of the things that concerned me was her fear of doing the chemotherapy. After the first round, she was not at all comfortable with what was in the medication that they were giving her to help her because she didn't feel it. So since then, I have been an advocate for awareness and also helping people understand what the drugs are, what the research is that shows that you shouldn't be afraid to take the medication as long as you're having a really great relationship with your doctors and your caregivers and really helping them with comfort to make sure that people don't wait too long before they get the help that they need. So to me, it's really about awareness to help with getting past the hard parts.
[00:21:18] Speaker F: I think it all comes down to more education. People can't be afraid of what they've heard of in the past because hearsay doesn't go that far. You have to look into the research for yourself. You have to be willing to go that extra mile and find out the truth. You can't always listen to someone else's opinions.
Opinions aren't always facts. You have to find the facts for yourself.
[00:21:40] Speaker G: Well, I think individuals need to make choices that are right for them. Some people might be fearful about participating in scientific research because they've heard some misinformation of what it's like to participate. Or maybe they don't understand how important it is to have diverse groups participate in research. I like to say all of us is like a baby step into health research that has a giant impact. Once you enroll, you give a blood or a saliva sample. You answer some questions through an app or via email. It's very easy to become part of all of us and help improve health. For many people, participating in the all of Us program and contributing to scientific research makes me feel like I'm making a contribution that could improve health now and possibly even lead to a cure so that my children and their children can lead a disease free life now that's powerful.
[00:22:32] Speaker H: I've heard that there are some people who are concerned about joining all of us or contributing to medical research.
Let me say that a lot of thought has been given by the people who are leading the all of us effort, both nationally and here in New England, where we're a part of the all of us effort. That's the mass. General, the Boston Medical Center. And I would say that smart people thought about how to protect your information. And I feel very comfortable with the way in which they've made sure that your information is deidentified.
There's no Tom Friar. I put my sample in there, but it becomes part of answering questions from researchers who want to take a look at someone who's my age, my background. So I would urge you not to be concerned about that. And if you have questions that go beyond that, please ask one of the folks from all of us and we'll try to get you an answer, because it really, really is a great program.
[00:23:41] Speaker D: What I love about all of us is they really want to include in research the voices of everyone. And I learned a long time ago that speaking up was crucial to my success or to being heard, to making my way. To have a voice at the table is just such an honor. It's exciting. It makes me feel like I'm having an impact. It's taking an opportunity that isn't always offered and isn't commonly offered. This is such a huge new study that can impact so many people's lives in the future by accelerating research and not to mention the lesser studied diseases, the lesser studied impacts of medication and all that stuff. It just really allows researchers to speed up the whole process by having access to that, to whatever cohort they want. By searching this massive anonymous database. When giving back is just saying what you think to people who want to listen, that makes it really easy.
It costs nothing to speak your mind and to be represented. That's really the gift of all of us. Being a participant feels like helping scientists draw maps for a treasure hunt with real treasure at the end that will benefit all of us. Participating, even by answering a survey, doesn't feel like work. I feel like I'm contributing to something meaningful, and that's a gift.
[00:25:36] Speaker A: Participating in health research is a gift we can give to our communities. Thank you so much to everyone who participated in this episode. Your stories matter, and by sharing them, you're helping to pave the way for a healthier future for us all and to our listeners. We hope you found these conversations as inspiring as we did. You too can give the gift of health research this holiday season. So to learn more about research programs like all of us, please visit the links in the episode description. And if you're interested in learning more about the all of Us research program, please visit joinolofus.org. Forward Slash Podcastne thank you for listening to conversations with all of us. I'm your host, Cheryl McLeod. If you liked this episode and you want to help support the podcast, please share it with others, post about it on social media, hit the subscribe button or leave a rating and a review. That's all for this episode, folks. See you next time.
Conversations with all of us is brought to you by the all of US research program in New England. All of us is an initiative from the National Institutes of Health and Mass General Brigham, a leading integrated healthcare system in New England, and Boston Medical center, an academic medical center with a deep commitment to clinical excellence and health equity, are working together with the all of Us research program to help researchers understand more about why people get sick or stay healthy.
Medical research hasn't always included everyone. This is why medical research has gender, racial, and age gaps. The all of US research program is working with Mass General of Brigham and Boston Medical center to change this, and you can help us close these gaps and receive $25 when you complete the steps to enroll. So join all of us today. To learn more, call 6177 680 or visit joinallofus.org podcastne Are you a participant in the all of Us research program? By completing your surveys and other new activities, you may be contributing to advancing medical research that works for all of us. So stay connected. Log into your portal today by visiting joinallofus.org, or use the all of us app to complete new surveys. For help, call 617-7688 300. That's 617-7688 and thank you for being part of the all of Us research program.
