I often interview men and women who are on the front lines of PCOS research, finding innovative solutions for women with PCOS. Sonya Satveit is such a trailblazer. Her latest initiative, Open Source Health, is focused on building a bridge between the latest research, the greatest experts and providers, and patients in order to close the gap and eliminate the fragmentation of service in health care. Listen as we discuss a study her team is about to begin, employing the latest in Precision Medicine for research in PCOS.
- What is Precision Medicine?
- How can analysis of your DNA be used to personalize care?
- Can Precision Medicine offer earlier detection of life-altering diseases or suggest preventative measures?
- How can you help or be involved in this study?
A full transcript follows.
About Sonya Satveit
Sonya Satveit’s journey to becoming a thought leader in women’s health began with her own health concerns. When her friend Ava taught her how to become an educated advocate her journey to becoming an empowered patient began. After 15 years of having to draw on that skill over and over again and meeting other women suffering, she began to blog about women’s health with the hope of helping even just one woman. As it turns out, Sonya connected with women from over 100 countries through her blog, Hormone Soup. Hearing stories of women suffering for years with no answers compelled Sonya to do more, as it became readily apparent to her that every woman could benefit from Ava’s gift.
Sonya’s passion and commitment to help other women become empowered inspired her to bring together a global team of experts in science, healthcare and technology to create a revolution in women’s health. She founded Open Source Health Inc. in 2013 to develop a new kind of healthcare delivery system specifically designed for women’s unique healthcare needs. The platform is called myAva as a tribute to her dear friend Ava. The future Sonya envisions is of an empowered patient that doesn’t have to fight, but instead has all of the tools, resources and data to take control of her own health. Working with her team to architect the convergence of Precision Medicine combined with Integrative Medicine, Sonya is creating a healthcare platform that combines genomics, proteomics, metabolomics, the micro-biome and biometrics with preventive medicine to help women live a long and healthy life at all stages. The initial launch focuses on the complex health syndrome, PCOS (Polycystic Ovary Syndrome) which Sonya believes to be one of the most underserved of all women’s health conditions. The myAVA Precision and Integrative Medicine Initiative has received global recognition and many patient-centred groups as well as technology and scientific groups are collaborating on the roll out of the system. Sonya’s leadership and devotion to women’s health is going to raise the bar for women’s health as she sets out to design the healthcare delivery system for the 21st century.
Open Source Health Inc.
|Amy:||Hello, this is Amy Medling, the founder of PCOS Diva. You are listening to the PCOS Diva Podcast. On the PCOS Diva Podcast, I often interview men and women who are on the front lines of research and moving the PCOS effort, finding solutions for women with PCOS forward. Today, I am really thrilled to be talking to what I think is a trailblazer in the PCOS world. Her name is Sonya Satveit and she is the creator of Hormone Soup and the founder and CEO of Open Source Health.|
|You may be familiar with Sonya through her work at Hormone Soup. Hormone Soup began as an effort to raise consciousness around women’s hormone issues and Open Source Health is a health care technology company that combines integrative care, women in technology, and to help women participate in their own health care.|
|Sonya, welcome to the PCOS Diva Podcast.|
|Sonya:||Thank you, Amy. It is great to be here. Thanks for having me.|
|Amy:||I really think of you as a Diva. Your story is somewhat similar to mine in the fact that I think we spent countless hours researching and looking for solutions for our own health issues and really advocating for better care. I think we both found a lot of solutions in kind of that integrative, functional medicine community. You sort of created these initiatives through Hormone Soup and now Open Source Health to kind of help women also that need help in this hormonal women’s heath area to move beyond these sort of Band-Aid solutions that we often see in mainstream health right now.|
|I would love for you to tell us in your own words, your story, and how you came to leading these two really great organizations.|
|Sonya:||Yeah. Sure. You are exactly right. I feel like we are kindred spirits. I too struggled with health care for a long, long time, my own health care, and getting my needs met in a way that satisfied me. I struggled with things like infertility, miscarriages, postpartum mood disorder that was quite severe and severe PMS, and then depending on which doctor I talked to, hypothyroidism. My whole life, I felt like I had hormone issues that weren’t being addressed, but I kept getting offered Band-Aid solutions that you talked about. I, like you, did a lot of research. My health care started in the day when there wasn’t all that much on the internet. Anything I could get my hands on and started a conversation with my doctor, but it is not that easy in our health care system to get that much time with our providers and finance.|
|I became very passionate it and I started meeting other women that were also struggling like me, and I started to realize this is a bigger problem than just me and my health care. That is when I decided to start blogging at Hormone Soup. I was just hoping to help even one woman if I could and help her feel not so alone or help her learn to advocate for herself. Learning to advocate for yourself is such a big thing. We don’t all naturally take to it.|
|When I was a young woman, I met a lady named Ava. She was so integral in teaching me how to advocate for myself, how to do the research and educate myself and get the knowledge I needed to then have that conversation with my health care provider and my 3 kids are here today because I started that process. Ava was a really big part of that for me. I really wanted to share that gift that Ava had by starting to talk about women’s health and hormone health. It is particularly a problem for women that isn’t getting addressed.|
|Amy:||Before we go into your new initiative, tell us a little bit more about Hormone Soup and what we can find there.|
|Sonya:||Hormone Soup started out as really just, like I said, this small idea that I had to start talking and sharing a bit about my story and other information that I came across in my many years of research about women’s hormone health. There is so much information and also so much misinformation. I started connecting with people on social media and through blogging and started to become aware of all sorts of different endocrine disorders that women were facing and other women’s health issues including things like gender bias in medicine. Things about personalized medicine and research that is more focused on men’s health and really ignoring this whole layer that is affecting women for decades. That is where the Hormone Soup sort of came in. I started a Facebook page and Twitter and all of those social media just really to start sharing information and found people like yourself and other patient advocates that are out there doing amazing things.|
|I started connecting with health care providers who are also frustrated with the health care system because they are out there too. There are providers, doctors, nutritionists, all sorts of integrative health care people that are trying to also get good information out there and trying to push the envelope and get better care delivered to women. That was the really incredible part.|
|As that network of mine grew and I got involved in participatory medicine, where people are actually taking an active role in their health care, I realized I couldn’t just blog anymore. That is when I decided I had to start building a health care program or company or some sort of health care system that actually would start addressing the needs for women and soon, blogging wasn’t enough anymore. My blog has been a little bit neglected over the last year while I have switched focus to really starting to make a difference in women’s health and gather thought leaders and experts in all sorts of areas to come together.|
|The big problem that I saw happening was the fragmentation of health care. You might go to a doctor or a nutritionist, you might go do all sorts of other things to help yourself feel better or get well. You try all sorts of different things. You go to the health food store and see what they have or you watch something on TV and you are trying to piece together a health care plan, but really that is problematic, I think. The fragmentation was one following the biggest issues I saw. For me, it is about building a bridge, I think, between the latest research, the great experts and provides that are out there that are able to help you and how women can access it. I started a company called Open Source Health to try and close that gap and deal with the fragmentation.|
|Amy:||That is such a huge amazing step that you made coming from a woman that was really searching for answers, to starting her own blog, to seeing this need that needs to be met in the health world and then stepping up to create this new company to help find solutions for women so that they can get better care. I just really applaud you. It is like this brave new world.|
|Sonya:||It is for sure.|
|Amy:||Tell us, you had mentioned participatory medicine. I know that when we spoke on the phone to get ready for our call, you told me about new initiatives in precision medicine or personalized medicine. Could you explain what this brave new world in medicine is for our audience?|
|Sonya:||Sure. Maybe just to sort of continue is with the company that I started, as I was talking to people in my network and leaning more because I am just a sponge for information in terms of health care. I am kind of one of those health care geeks. I don’t really have a background in health care other than as a patient, and really becoming an empowered patient is so huge. There is no better time, I think in the history of medicine than now to be able to do that. Precision medicine is, I think, about to become embraced by patients and providers alike. I think I will just explain precision medicine who might not understand.|
|Precision medicine is also referred to as personalized medicine. There is a bit of confusion around it. It is centered in genomics, and so your DNA. Taking a look at what your specific DNA looks like and then using that to inform the care of the patient. When we start getting actual molecular data about a patient, then what does that look like, and what we can we get out of all that information to actually deliver a more personalized type of care?|
|For example, it is being used in terms of its called pharmacogenetics. It is a big convoluted word to say. For example, one person might have trouble metabolizing Clomid, which is a fertility medication. Maybe 30% of women have that gene mutation that affects their ability to metabolize Clomid. How do you know that without having your DNA looked at? That is where precision medicine comes into sync like that. We hear about it more in terms of cancer right now, but I think that PCOS is a perfect use case for precision medicine.|
|We have taken that a few steps further than just talking about women’s DNA. We are combining all sorts of data on many different levels. We will look at genomics, which is your DNA, the genes that you carry, and then we are also looking at proteomics, which are the proteins in your blood and they carry disease markers. We are going to look at those too. Then, there is metabolomes, so that is called metabolomics. Then, there is the microbiome. We all have different gut flora and vaginal flora and that is an emerging and super interesting field. I think there’s hidden insights in there that we are just beginning to discover.|
|Then, there are other biometrics and then there is the missing piece in medicine where nobody is really listening to the patient, and so patient self-reported data. We can do all of this stuff for a patient, but how do they feel about the quality of their life? I think that is piece that is really missing in medicine today is, how does the patient feel about her health and getting out of bed in the morning and all of those things? How does this all interact with her mental health? Those pieces are being dealt with quite differently on a fragmented basis. We are really bringing all of these pieces together and creating a molecular view of a woman with PCOS.|
|President Obama has recently announced the Precision Medicine Initiative. He and his office really believe that precision medicine is the future. Other governments around the world are getting involved as well in this whole precision medicine movement. I think it is really the future of health care, and I think PCOS is the perfect use case to start trying to figure out what we can use of this data to inform the care, specifically for each woman. Maybe it is different for one woman with PCOS. We have different sub-types of PCOS but we also have all sorts of other differences. What does that look like? To be honest, we don’t actually know. I think it is time to find out. I think so do a lot of other women.|
|There is this huge gap and time lag from health research and then that research being put into practice. I have read studies it is actually 17 years of the time lag. We think it is time to close that gap, give women access to their own data. They act as their own control and so it is your data and what are you going to do with it? Can you learn from it? Can your health care providers use it to help you get the best care and hopefully get optimal health? Earlier detection of potentially life-altering disease is possible. More access to preventative measures and greater insights. Those are all things that precision medicine can bring. I can’t think of a patient group that is more medically under-served than women with PCOS. That is why we are starting with PCOS because I think there is nowhere to go but up. The protocol hasn’t changed in decades and so many women with PCOS are suffering. I think it is time to change that.|
|Amy:||Yeah. This is really exciting. I just attended the Androgen Excess PCOS meeting. I will be honest with you, I was really disappointed. I think that we need somebody like you and this effort to shake things up. The dialogue was a lot of the same old, same old, and there was not a lot of innovation. I see this as being extremely innovative for the PCOS effort.|
|I will tell you that I do have some experience with this kind of precision medicine with my husband. He is being seen by a really wonderful functional endocrinologist to sort of get to the root problem of why he is having some atrial fibrillation. They did some testing with Boston Heart Diagnostics, where they actually look at different genetic markers. We found out that he has the MTHFR mutation. The good news was he didn’t have blood clot protein genes, which is good news with A-fib. He also has some genetics that kind of lead him to cholesterol issues. The doctor made some recommendations on supplements based on that genetic testing. He is also having neurotransmitter testing done as well that then the doctor will be able to recommend certain supplements as a result of his own unique neurotransmitter profile.|
|It is very cool that you can really customize medicine based on your own individual factors and not just because every other woman that has PCOS should be given Clomid and Metformin. I’m very excited about this.|
|Sonya:||Right. For every woman who was in a study 20 years ago or that kind of thing…|
|Sonya:||I think that we are going to all start learning so much about ourselves. The reason some of this couldn’t be done before is because we didn’t have a way to store that much data on one human being. Now that it is possible, thanks to the cloud and we can actually store huge amounts of data. For us, we take the patient genome, and we start to look at that, but also look at the proteins, and the metabolites, and the microbiome, and other measures every 90 days. We are going to start to see changes happen. As we introduce integrative health care measures, so changing some nutrition and things like that, we are going to start noticing changes, I think, on those measures every 90 days. I think once we start being able to bring enough women into our precision medicine and integrated medicine PCOS program, we are going to actually start to see things that we are going to be able to pick out of this data that just never have even been noticed before.|
|We are casting a wide net and for women who want to do that with us and be those innovative patients, those empowered patients and say, “You know what? I don’t know 100% of what is going to come out of this, but I want to start finding out.” The time to do that is now.|
|If you think of a women’s reproductive years, just as one example because that really was important to me, it was taking so long to try and get answers in my health care. By the time anybody does any research, my productive years are almost over. I didn’t want to wait for that kind of stuff. I feel really excited about what is happening now in terms of precision medicine.|
|Then, you and I agree on functional and integrative treatment approaches and talking about prevention and things that are complementary that could make you feel better day by day.|
|Amy:||Yeah. You know what I find really exciting about the work that you are going to be doing is that you are looking at the gut biome. I know Dr. Felice Gersh has been on the podcast and has written articles for PCOS Diva, talking about that subject. I believe she is one of your consultants on-|
|Sonya:||She is. Dr. Gersh is an advisor to us. She is just wonderful and so knowledgeable about all of the aspects that we are bringing together in this program. I am so happy to have her on board.|
|Amy:||Yeah. Eat the Excess Androgen PCOS meeting, half of the meeting was dedicated to mood disorders and women with PCOS. Women with PCOS are 5 times more likely to have depression and about 5 times more likely to have anxiety than women without PCOS. I am really interested in that kind of gut-brain connection. I would be very curious to see if you find some correlation with women with PCOS and their gut biome and as things improve, do the mood disorders improve as well. That is something that I am really interested in.|
|Sonya:||I am super interested in that too. There is so much research coming out in terms of the biome and also, interestingly, in terms of how we gain and lose weight. The gut-brain connection is super interesting and so is the other aspects of the microbiome. I am equally fascinated, Amy. I think it is going to be really interesting. I can’t wait to deliver this to women all across the country and even more than that, start to talk about what kinds of results that we are seeing. That is going to be really, really exciting and something that is not really being done right now. Really exciting time in terms of health care and women’s health.|
|Amy:||Your plan is to start with 10 women in Atlanta. Then, what is your plan to scale from there?|
|Sonya:||Yeah. The reason we are starting with 10 women is because the way I approach everything is from a patient perspective because that is my background. When I first started and thought about starting a health care company, I thought, “Who am I to start a health care company?” I probably could have been voted the least likely person that should start a health care company. I have to tell you, it didn’t take me long to realize I am exactly the person to start a health care company because it needs to come from the patient’s side. This transformation needs to be pushed from the grassroots. I am really passionate about patient empowerment and advocacy.|
|You hear all of these buzzwords when you go to medical conferences and everybody is saying, “We empower patients and we have a patient-centered this and that.” Truly, when you look at it, it is not really that empowering.|
|For me, I am one patient, so how can I build a health care company just based on my information and my experience? I think it needs to really involve patients at the grassroots.|
|With this PCOS project, we are bringing 10 women in and we are working with the clinic that I know the doctor personally. The clinic, they are trailblazers too, and they believe in really this whole area of precision medicine. It is new for everybody. Most doctors and clinicians don’t know about much, but we are all learning together, which is actually quite exciting. We are all kind of all on the same page.|
|These 10 women are actually going to be acting as advisors to help us build the program in a very patient-centric way. There really go to be women who have PCOS, women who maybe are on the more mature side of things and women who are just starting out, women who were recently diagnosed, women who were diagnosed a long time ago, women who have had babies, women who maybe have not had babies yet or have struggled with infertility, women who are lean, and women who have problems with obesity. We are getting this great variety of women with PCOS and then we are going to put them through the program first.|
|As they got through the program, they are actually going to come back and advise us, and I am going to through with them so that we can actually have great conversations about how it feels to be going through this, and how does it feel to get your genetic data back? How does it feel to be going and getting your blood taken every 90 days? Those kinds of things and really be able to build a program around patients that is for patients. For me, coming at it from the patient side is the only way to build something that really is patient-centric and is going to be something that aligns with how patients want to see their health care delivered.|
|That is why we are starting with 10 women in Atlanta and then we will scale up from there. We are going to learn a lot. There are probably going to be bumps and bruises along the way, when we get started here in a few weeks, and that is fine. Everybody is willing to take the plunge and do that, and that is how we are going to learn.|
|Then, once we get through a cycle or two, we are going to open it up and start scaling. Some of this stuff takes a while to get this much analysis back and start to inform providers how they can actually use this data to help the patients and that kind of thing. We will scale it up systematically from there and then eventually move to other clinics across the country and hopefully be able to offer it to many, many women- any woman who really wants to learn more about their own personal health and take an active role in getting integrative treatment.|
|Amy:||Are you planning on publishing results in medical journals? That kind of thing.|
|Sonya:||I think that is a good question and that is something that we are definitely going to look at down the road. Right now, we are just kind of building the program and then we will definitely go for IRB approval and build a study around what we have put together. For the first 10 women, we are just kind of using these initial tests to sort of build out the program and see how we want to do it. We are working with the top scientists really across, globally actually, but particularly across North America to already take best practices that are being used, even though it is early stage on everything, and put this program together. Once we figure out how we are going to do that, then definitely, I think it is time to start being able to publish this information.|
|Amy:||I am just so appreciative of what you have been doing, Sonya. I think you are shining your light. You have bravely and courageously sort of stepped up and you keep stepping and moving forward. I know that is not always easy to do. On behalf of women with PCOS, thank you for what you are doing. How can we help? How as a community can we help you in your efforts?|
|Sonya:||First of all, thank you so much. That means a lot to me coming from you. It is one following those cases where ignorance is bliss- if you knew how hard something was, you might not have got started. It is also coming from the heart. I feel passionate about it every day. When I started blogging, I would sit at my computer and just leak tears of frustration for women around the world who were reaching out to me with their stories. How can you not do something when you start gathering this kind of network and people around you. You start to see all of the pieces and how they could possibly come together. Really, I don’t know how I couldn’t have done something. Really, that is what it is about for me. Really, I think the best thing to do.|
|If anybody wants to learn more, I would be happy for anybody who is interested to reach out to me personally, that would be great. If you want to stay involved or informed about the roll-out and where we are at, I would be really happy to keep you in the loop and let you know how we are doing and what we are rolling out in terms of the program coming out across the country over time.|
|I mentioned my friend Ava, and I didn’t follow up by saying the platform is actually being named as a tribute to my dear late-friend, Ava. She had passed away a couple of years ago, and I really wanted to be able to find a way to pass her gift on to other women. I always thought I wish every woman could have her own friend named Ava. The platform is going to be called, “MyAva.” If you go to myava.com, you can put your email address in, and we will keep you in the loop and let you know about any updates or what we are doing with the precision and integrative medicine project.|
|Amy:||That is really beautiful. I am sure she is so proud of you and what you are doing for women. Thank you, Sonya, for joining us today and sharing this great news of your new initiative.|
|Thank you, everyone, for listening. I look forward to being with you again soon. Bye, bye.|