Podcasts about precision medicine initiative

According to the Precision Medicine Initiative, precision medicine is "an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person."Bev & Paul talk about how Bio-Touch has always held this idea as a key element of Bio-Touch healing being used in our healthcare protocols.

What does the future of personalized medicine look like? Are RFK and Trump moving at warp speed to implement the UN'S and Obama's Precision Medicine Initiative? Is DeepSeek a psyop to gut Silicon Valley? How will this affect 401k plans and the recent project announcement of Stargate MRNA vaccines? Join LIVE in this historic time, as the Dangerous Dames dive into all things AI & more! __________________________________________________________ This Show Is Only Possible With Support Of Our Dangerous Audience! ---------------------------------------------- ▶Support our show by supporting your health & wealth! ▶The Medical Rebel Shop: Promo Code: DANGEROUS * Healthy Foundation Pak 2.5 https://bit.ly/3V0ohHS * Rebel Immunity https://bit.ly/3Kivo9u * Greska's Carbon-60 https://bit.ly/3R3R6C6 ▶Richardson Nutrition Center: http://bit.ly/Dangerous-Dames-B17 Use Promo Code: DANGEROUS for a 10% Discount! ▶ Defy The Grid - Goldbacks: https://bit.ly/Dangerous-Dames-Goldbacks Use Promo Code: DANGEROUS ------------------------------------- ▶Follow & Connect with Courtenay: https://linktr.ee/courtenayturner ▶Follow & Connect with Dr. Merritt: https://drleemerritt.com/ ©2025 All Rights Reserved Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode, our guests discuss the potential of large-scale health datasets to transform research and improve patient outcomes and healthcare systems. Our guests also delve into the ethical, logistical, and technical challenges that come with these programmes. We hear how organisations such as UK Biobank, Our Future Health, and All of Us are collecting rich, diverse datasets, collaborating and actively working to ensure that these resources are accessible to researchers worldwide. Hosting this episode is Dr Natalie Banner, Director of Ethics at Genomics England. She is joined by Dr Raghib Ali, Chief Medical Officer and Chief Investigator at Our Future Health, Professor Naomi Allen, Professor of Epidemiology at the Nuffield Department of Population Health, University of Oxford, and Chief Scientist for UK Biobank, and Dr Andrea Ramírez, Chief Data Officer at the All of Us Research Program in the United States. "There are areas where academia and the NHS are very strong, and areas where industry is very strong, and by working together as we saw very good examples during the pandemic with the vaccine and diagnostic tests etc, that collaboration between the NHS and academia industry leads to much more rapid and wider benefits for our patients and hopefully in the future for the population as a whole in terms of early detection and prevention of disease." You can download the transcript or read it below.  Natalie: Welcome to Behind the Genes   Naomi: So, we talked to each other quite regularly. We have tried to learn from each other about the efficiencies of what to do and what not to do in how to run these large-scale studies efficiently. When you are trying to recruit and engage hundreds of thousands of participants, you need to do things very cost effectively. How to send out web-based questionnaires to individuals, how to collect biological samples, how the make the data easily accessible to researchers so they know exactly what data they are using.   All of that we are learning from each other. You know, it is a work in progress all the time. In particular you know, how can we standardise our data so that researchers who are using all of us can then try and replicate their findings in a different population in the UK by using UK Biobank or Our Future Health.    Natalie: My name is Natalie Banner, and I am Director of Ethics at Genomics England. On today's episode we will be discussing how we can unlock the potential of large health datasets. By that I mean bringing together data on a massive scale, including for example genomic, clinical, biometric, imaging, and other health information from hundreds and thousands of participants, and making it available in a secure way for a wide range of research purposes over a long time period.   Through collaboration and industry partnerships, these programmes have the potential to transform research and deliver real world benefits for patients and health systems. But they also come with challenges ranging from issues in equity and ethics through to logistics, funding, and considerable technical complexities. If you enjoy today's episode, we would love your support. Please like, share, and rate us on wherever you listen to your podcasts.     I'm delighted to be joined today by 3 fantastic experts to explore this topic. Dr Raghib Ali, Chief Medical Officer and Chief Investigator at Our Future Health. Professor Naomi Allen, Professor of Epidemiology at the Nuffield Department of Population Health, University of Oxford, and Chief Scientist for UK Biobank, and Dr Andrea Ramírez, Chief Data Officer at the All of Us Research Program in the United States.   Andrea, if I could start with you. It would be really great to hear about All of Us, an incredibly ambitious programme in the US, and maybe some of the successes it has achieved so far.   Andrea: Absolutely. Wonderful to be here with you and thank for you for the invitation. The All of Us Research Program started in 2016 from the Precision Medicine Initiative and was funded with the goal of recruiting 1 million or more participants into a health database. That includes information not only from things like biospecimens including their whole genome sequence, but also surveys that participants provide, and importantly linking electronic health record information and other public data that is available, to create a large database that researchers that access and use to study precision health.   We have recruited over 830,000 participants to date and are currently sharing available data on over 600,000. So, we're excited to be with your audience, and I hope we can learn more and contribute to educating people listening about precision medicine.   Natalie: Thank you, Andrea. And not that this is competitive at all, but Raghib, as we are recording this, I understand the Our Future Health programme is marking quite a phenomenal milestone of 1 million participants. Would you mind telling us a little bit about the programme and something that you see as the benefits of working at scale for health research.   Raghib: Thank you very much. So, Our Future Health is a relatively new project. It was launched in 2020 with the aim of understanding better ways to detect disease as early as possible, predict disease, and intervene early to prevent common chronic diseases. Similar to All of Us, we are creating a very large database of participants who contribute their questionnaire data, physical data, genetic data, and linkage to healthcare records, with the aim as I said, to really improve our understanding of how best to prevent common chronic diseases.   So, we launched recruitment in October 2022. Our aim is to recruit 5 million participants altogether, and in the last 2 years about 1.85 million people have now consented to join the project. But you are right, as of last week we have what we call 1 million full participants, so people that have donated a blood sample, completed the questionnaire, and consented to link to their healthcare records. In our trusted research environment, we now have data on over 1million people available for researchers to use.   Of course, we have learnt a lot from the approach of UK Biobank, which we are going to hear about shortly, but the resource is open to researchers across the world, from academia, from the NHS, from industry, so that will hopefully maximise the benefits of that data to researchers, but as I say with a particular focus on early detection, early intervention, and prevention research.   Natalie: Thank you Raghib. Great to have you with us. Naomi, Raghib mentioned that UK Biobank has been running for a long time, since 2006.  It is a real success story in terms of driving a huge range of valuable research efforts.  Could you talk to us a little bit about the study and its history and what you have learned so far about the sort of benefits and some of the challenges of being able to bring lots of different datatypes together for research purposes?   Naomi: Yeah, sure. So, UK Biobank started recruiting 0.5 million participants in 2006 to 2010 from all across the UK with a view to generating a very deep dataset. So, we have collected information on their lifestyle, a whole range of physical measures. We collected biological samples, so we have data on their genomics and other biomarkers. Crucially because they recruited 15+ years ago, we have been able to follow up their health over time to find out what happens to their health by linkage to electronic healthcare records. So, we already have 8,000 women with breast cancer in the resource, cardiovascular disease, diabetes, and so on.   But perhaps most importantly, not only does it have great data depth, and data breadth, and the longitudinal aspect, is the data is easily accessible to researchers both from academia and industry, and we already have 18,000 researchers actively using the data as we speak, and over 12,000 publications already generating scientific discoveries from the resource.      Natalie: So, we have got 3 quite different approaches. Recruiting in different ways, different scale, different depth of data collection and analysis, but all very much around this ethos of bringing lots of different datatypes together for research purposes. I wonder if you could talk a little bit about how you might be sort of working together, even though you have got slightly different approaches. Are there things that you are learning from one another, from these different data infrastructures, or how might you be looking in the future to work together to address some of the challenges that might come up from working at scale?      Naomi: So, we talk to each other quite regularly. We have tried to learn from each other about the efficiencies of what to do and what not to do in how to run these large-scale studies efficiently. When you are trying to recruit and engage hundreds of thousands of participants, you need to do things very cost effectively. How to send out web-based questionnaires to individuals, how to collect biological samples, how to make the data easily accessible to researchers so they know exactly what data they are using.   All of that we are learning from each other, and you know it is a work in progress all the time. In particular, how can we standardise our data so that researchers who say are using All of Us can then try and replicate their findings in a different population in the UK by using UK Biobank or Our Future Health. So, can we come up with common standards so that researchers can better directly compare the data that they are using? So, we are in close contact with each other.   Natalie: Fantastic, thank you. And Andrea, from your perspective obviously you are collecting data in the US. Are you finding ways of working internationally and with other infrastructures like Biobank and Our Future Health around things like data standards? It sounds like something simple, but I can imagine it is quite complex in practice.   Andrea: Absolutely, and that dialogue and understanding and learning from each other both informally in meetings and talking as well through the published literature. So, all of these datasets are actively widely used, and seeing what is coming out in publications helps us know what researchers are doing with the data. And when you see different researchers either generating hypotheses from our datasets in a different way, or testing hypotheses differently, that helps us understand where some benefit might be added to our dataset or where we really may need to grow in a different direction to meet some other research needs.   I think that every study design always struggles with that balance between knowing exactly what we want to study and therefore building very specific questions and very specific protocols, but also allowing for the knowledge that we don't really know all of the discovery we need to make and bringing in datapoints that will really generate those new hypotheses for the future.     I think for our study in particular, UK Biobank has been so remarkable in this way, helping structure All of Us to be able to contact our participants like UK Biobank and say, “Hey, we didn't really know what we were going to get, but we have put all this wonderful data together and now we need to do a deeper dive.”   So, the engagement and long-term return of those UK Biobank participants has really enriched our data, and we have learnt from UK Biobank a lot there, and hope through growing our partnerships programme that we can continue to create partnered research opportunities to strengthen that data as well. That is a new thing coming out of our group. You may have heard of it previously as ancillary studies, but we recognise the partnership that is important for those research opportunities. So, we are reporting here that we are hoping to rebrand it to reach a larger audience, and that is led by Dr. Shelley, as partnered research opportunities that will allow us to re-contact, bring our participants back, and really deepen that dataset.   Natalie: Thank you. And Raghib, I know that it is a really important part of the Our Future Health model about going back to participants, but you are in quite early stages of working out what those opportunities might look like.   Raghib: Yes, very much early stages. Just to reiterate the point for me personally, having started my research in the UK about 20 years ago, I have certainly learnt a lot personally, but we have all learnt a lot from the model that UK Biobank established in terms of collecting data and providing it to researchers, and I see these 3 studies as very much complimentary.   All of Us again have done a lot more work in terms of providing feedback to participants about their risk of disease and genetic information, and as you say Our Future Health was set up deliberately to not just be a purely observational study, but to give participants feedback about their risk of different chronic diseases as well as the opportunity to take part in not just studies to collect data, but also interventional studies to see if we can change the natural history of disease and prevent diseases in our participants.   So, that has never really been done at scale before, and that is certainly a big challenge for us to do, not just in the UK, but anywhere, including the US and working with health systems as to how best to do that. So, you know we have spent the last 2 years really trying to understand how best to recruit participants and to provide data to researchers for the next couple of years, and long beyond that we will be looking really as to how we can maximise the benefits of providing feedback to participants and taking part in interventional studies.   Naomi: I think one way in which we can all learn from each other actually, is we know how to recruit hundreds of thousands of people, the general population, into research study, and the next challenge is how do you keep engaging them, telling them what you are doing. You can't collect everything when they first join the study, or they would be with you for days. So, what UK Biobank has been doing is sending out web-based questionnaires, a couple a year, to find out extra information about health outcomes, lifestyle factors. Inviting them back to specific assessment centres.   So, we are inviting 100,000 participants back for imaging, and then again over the next few years for a second scan. So, I think the real challenge here is once you have recruited them, how to find that right cadence of engaging those participants to keep contributing their data and their biological samples to really maximise the value of the dataset for research. That is an ongoing challenge for all of us. But I have to say, the UK Biobank participants, they are an amazing group of individuals, very altruistic.   Our Future Health and All of Us, we don't give feedback, so there is nothing in it for our participants other than knowing that their data may help the future health of their children, and their grandchildren, and the rest of the world. So, that is very humbling, to know that the data that they have generated, and we have collected on them, is being used in that way.   Natalie: That's a really interesting point, Naomi, about the difference between a research study that is designed for answering a particular question. You gather specific data for a specific purpose, and when it comes to recruiting participants into that you can be very clear about what it is you are trying to do.   But of course, for all of these programmes, the whole nature of them is that you are collecting a lot of data over a long period of time, and it could be used for all sorts of different purposes. You can't say at the outset exactly what those purposes might be and what those outcomes might be. So, there is a really interesting question, and of course I would say this with my ethics hat on, a really interesting question around sort of participant trust and confidence in those programmes.   Naomi, you spoke just then about one way of retaining engagement and retaining people's interest, but I wonder Raghib and Andrea, if you have got thoughts on those sort of questions of how you can create that environment where participants can trust what you are doing with data over a long period of time, when you can't at the point at which they consent, say exactly how that data might be used? You have got a sense of the kinds of purposes, but you can't be too specific         Andrea: Sure. We know, and I have learnt from my own peers in this role, that enrolment in the study isn't the end point of engagement. All of Us's approach on engagement has been communicating with the entire community and really being there in the community, and that has been very powerful.   One effort over the last year we are proud of has been what we are dubbing participant driven enquiry, and that is where we say, “Thank you participants. We have gotten a ton of data out there for use, and funded researchers to use it all the time, but what do you, the participants, really want?” We were able to then take papers that researchers write and help tell participants and explain it in lay language, so the participants can say, “Hey, I have a question. Could you answer that for me?” Maybe we can, maybe we can't, but it has been very interesting to hear what participants want to know, and that participant driven enquiry project has turned out to be a big opportunity there.    The question they came to was not easy. Certainly, we didn't expect an easy question, but they came to us asking, “Why is my diabetes worse than someone else's? Is it the environment? Is it my genome? Is it my access to care? Why can't my diabetes be as well controlled as someone else's?”  So, that has been huge, to interact directly with our participants and help really close the loop by answering questions in the language of research and show them how their data is contributing back.    Natalie: Thank you. And Raghib, how are you sort of grappling with these questions, particularly because you are recruiting so very heavily at the moment?   Raghib: So, as you say it is a challenge, and people do join the programme primarily based on trust that we will use their data for public health benefit and for the benefit of the whole population, but they also join on the basis that they will get back information about their own health and their risk of disease. To do both of those is not straightforward. I mean, the first of those, it has been well established by UK Biobank, and about 80% of our participants also say they are doing it primarily for to altruistic reasons, which is great. But 80% also said they would like to receive feedback about their own health, which is also understandable, and so we need to find ways to provide that in a timely way, but also in a way that the health service can manage. That is going to be one of our key challenges going forward.    But to echo what Naomi and Andrea have said, I mean to maintain participant's engagement with the programme is not easy. We need to make sure that they are receiving information regularly, are kept up to date with what we are doing with their data, with the work that we are doing with academia, with the NHS, with industry etc. It is easier now than it was before because Our Future Health has been set up as a digital cohort, so we have means of communicating much more easily with our participants. But yeah, as you say we are at early stages. Over time that does get harder, to maintain that engagement. So, we know in the next one to 2 years we need to step up our work on feedback and recontact.   Natalie: Fantastic. I really love the idea of like the participant-led enquiry. That is something that I think our participant panel at Genomics England would really like to hear more about.   So, speaking about sort of ongoing engagement with participants, one of the challenges we know around recruiting into large-scale studies like this is that many research datasets don't have equal representation from all communities. That might have an impact on the quality, the representativeness of the scientific outputs that you can generate, and potentially the benefits back to patients and participants.   How are you addressing this challenge in recruitment where you may have some communities that are not as engaged with scientific research. You may have elements of distrust or people being marginalised, having difficulty accessing research and these sorts of opportunities. Do you have any examples of what has worked really well? Raghib, if I could come to you first.   Raghib: Sure. So, I mentioned I worked on UK Biobank about 20 years ago. One of the things I was looking at then was how we could maximise participation, particularly of people from ethnic minorities into the project. Because of the age group that was chosen by UK Biobank for very good reasons, age 40 to 69, the proportion of people from ethnic minorities was relatively small. So, although it was representative for that age group, I think it was about 6%, or 34,000 out of the 500,000, that were from non-white ethnic minorities.   So, when Our Future Health was set up, we knew that the population has changed anyway. You know, the UK has become a much more ethnically diverse society. But also, because it is a cohort from 18+ and I think minorities tend to be younger on average than the white population, we knew we had an opportunity to really have a big step change in the number of people that could take part in a study like this. So, our aim is actually to get 10% of the whole cohort from ethnic minorities, so 500,000 out of the 5 million from ethnic minorities. Actually, so far we are pretty much on track. So, of the 1.8 million that have consented, about 180,000 are from non-white ethnic minorities.   That is extremely important, particularly for genetic research where non-European populations are very much underrepresented in nearly all genetic databases. Secondly, from a UK context, although it applies of course in all countries, is that people from more deprived backgrounds are also less likely to take part in this type of research. So again, we have made a very deliberate attempt to try and ensure we have adequate numbers from the most deprived quintile. Again, about 10% of the cohort so far, nearly 200,000 are from that most deprived quintile who both are underrepresented in research, but also have the worst outcomes. So, this is really our first study that has been big enough in the UK to look at that group properly and understand some of the factors at an individual level that we haven't been able to in the past.   Finally, geographically, so the first time again because it is a digital cohort, we were able to recruit people from all over the UK. So, every single part of the UK is now represented in Our Future Health, particularly coastal communities and rural areas that haven't been able to take part in this type of study before, as well as Northern Ireland. You know, for the first time we have got that full geographical coverage.   Natalie: Fantastic. I suppose a lot of that recruitment approach has very much been about going to where people are, rather than expecting them to come to you. Is that right?     Raghib: That is right and thank you for reminding me. So yeah, we have had a different approach. So, we have opened up many, many more clinics than previous studies through a combination of mobile units, shopping centres, community pharmacy. Community pharmacy in particular has been very important. So, to date we have had about 400 different venues that we have been able to recruit. That is over 1 million people that have given blood samples, and that has really enabled people from every part of the country to take part. Secondly, we have kept clinics open in areas of greater deprivation and ethnic diversity much longer than in other areas, to maximise the opportunity for them to join. Thirdly, we do provide reimbursement for people with expenses to ensure they aren't excluded because of financial reasons, and again that has helped.    Natalie: So, really making those efforts is evidently paying off. Andrea, have you had similar experiences as All of Us? What has your approach been to try and ensure that you are getting a wider representation from different communities?    Andrea: It has really been a focus on the programme from the start to engage those who have not been included in research in the past and make sure the opportunity is there to participate. Our Engagement Division, led by Dr. Corrine Watson has really pioneered reaching those communities here in the US.   I think one other thing I will mention that we think about when we think about how to engage participants and reach people to return value back to those communities, is to make sure the people who are accessing the data also represent them, and we can build diversity within that researcher workforce. So, since our data was first released in 2020, we have recognised that the biomedical workforce also has a huge group of underrepresented individuals, and a lot of our researcher engagement and researcher outreach has focused on reaching those of diverse backgrounds and career paths.   To that end we have reached out and engaged historically black colleges as well as other minority serving institutions, really looking to make sure that their students and researchers can have the same access as more traditional research-based institutions in the US system.    That has been important because our system is built on cloud-based architecture and shared data that doesn't require a huge cluster on campus, and that helps remove a barrier that some of those institutions and researchers may have had. We also know they haven't been able to participate in the past, and we think that cloud architecture again can make the data much more feasible and be a huge support to diversifying the researcher workforce as we go forward. That circling back, helping them be the voices speaking to their community, helps build out that diverse participant community base as well.    Natalie: That's such an important point, because it is not just about the participants and the data you can collect, but also who is able to look at it? Who is actually able to undertake the research?    Naomi, can I bring you in here? I know that UK Biobank has been thinking a lot about researcher access to data and trying to ensure that the data that you hold, the really rich datasets you hold in UK Biobank, are more accessible to researchers from different backgrounds who may not have the same level of resources. Can you tell us a little bit about the work you have been doing on that?   Naomi: Yeah. So, just following on from what Andrea said, it is really important to get as diverse ideas as possible from across the global research community to really move public health forward.   So, what UK Biobank has done is we are putting mechanisms in place so that early career students, and career researchers, and researchers at all levels of their career from lower income countries, can access the data at a much lower fee. So, currently for most researchers it costs about £9,000 to access all of the data. So, that is 40 petabytes of genomic data, biomarkers, clinical outcomes, lifestyle factors and so on. So, early career researchers and those in lower income countries, it is about £500.   On top of that a group of big pharmaceutical companies have got together to create a global researcher access fund, which essentially covers this reduced fee so that all researchers no matter where they are from have exactly the same opportunity to access the data to advanced scientific discoveries. So, on top of that all our researchers now use our online secure research analysis platform. While there is no charge to access the platform, there are costs associated with compute needed to analyse and store the results.    So, AWS have donated research credits for early career researchers and those from lower income countries up to a total of about $500,000 per year, to use the research platform. So, researchers can apply to use these research credits to offset the costs of compute and storage. So, that means that we are trying to democratise access to researchers from all around the world.   I think actually our biggest challenge is not so much … we have largely dealt with you know subsidising the cost. It is actually making researchers from lower income countries aware that these resources exist, and that are applicable to them.   So, sometimes we hear from say researchers in Africa or South America, “Well, there is no point accessing UK Biobank because it is not relevant to our population.” You know, a third of our researchers are from China. So, even if UK Biobank hasn't got coverage of those racial ethnic populations, that doesn't mean that the associations that you find between risk factors and disease risk are not applicable to other different populations. And that is also why having different resources like UK Biobank, like Our Future Health, like All of Us, in different populations around the world, is so important in order to replicate those findings.    Natalie: Absolutely, and fantastic just to hear the attention that is being paid to trying to ensure that diversity of different types of researchers who will just bring different questions to the table, different perspectives on the data, different priorities, different types of questions.    So, speaking about that diversity of researchers, one really important part of his ecosystem that we haven't really touched on so far is around the role of industry. There are a lot of really important research questions being addressed by industry. Some that can only really come from, maybe it is pharmaceuticals, maybe it is tech.   From your perspectives, what kind of role can and should industry and commercial partners play in supporting the kinds of long-term research studies that you have set up, and ultimately trying to get to that point of sort of generating benefits back to patients and health systems. Naomi, can I start with you, for that sort of longer-term perspective for Biobank?   Naomi: So, industry are great partners for long-term studies like ours because they can bring additional funding, expertise, and technology. So, for UK Biobank, because it is so easily accessible to industry and academics alike on exactly the same terms, what it has meant is that industry, particularly big pharma and also now big tech, they can access the data, they see the value of the data for their own research purposes, and then they have invested into UK Biobank to do whole-exome sequencing, whole genome sequencing, proteomics at scale to increase the value of the dataset for their own drug discovery pipelines.   But of course, it means that the data that they have generated, which cost millions of dollars to generate, when you need deep pockets to do these kinds of study enhancements, then become available to all researchers. So, having access to these large-scale resources that have deep data on genomics, physical measures, other biomarkers, and clinical outcomes enables pharma to rapidly increase their drug discovery pipelines in generating new drugs and treatments for patients, and also those data are then shared with the rest of the global research community.     So, we found it to be a really exciting win/win in which industry get what they need to help move forward new drug targets and discovery, but also other researchers get what they need in order to make other scientific discoveries in different fields of research.        Natalie: Thank you. And Raghib, I know that for Our Future Health, that industry relationship is a really important part of the founding model. Will you tell us a little bit about how you are engaging and working with industry partners?   Raghib: Sure. So, as you said Our Future Health was set up in a different way, as a very public private partnership. Although the largest funder is the UK Government, more than half of our funding has come from a combination of life science companies, so pharmaceutical, diagnostic companies, as well as the medical charities, so the larger medical charities in the UK. That partnership is deliberate for all the reasons that Naomi has outlined. There are areas where academia and the NHS are very strong, and areas where industry is very strong, and by working together as we saw very good examples during the pandemic with the vaccine and diagnostic tests etc, that collaboration between the NHS and academia industry leads to much more rapid and wider benefits for our patients and hopefully in the future for the population as a whole in terms of early detection and prevention of disease. So, we have 16 life sciences companies that have joined as founding partners with Our Future Health who have contributed financially to the programme.    Equally importantly they have also contributed scientifically, so there is a huge amount of scientific expertise in industry, and they work with us with our Scientific Advisory Board with our scientists internally to think about the best use of the resource for drug discovery, diagnostics, new medical technologies, and new targets etc.    So, that is the vision, and so far, it is working well. It is a relatively new model to have set up a project like this in this way, but it has been a very collaborative approach, and we all recognise, all have similar aims, so recognise what we are working towards. You know, we meet regularly. We have a Joint Founders Board where as I say academia, NHS, industry, and the charities come together to decide on the priorities for the coming years.   Natalie: Fantastic. And Andrea, I suppose in the US it might be slightly different culturally from the UK, but the role of industry with All of Us, how are you engaging with those pharmaceutical, technology bodies, and partners as well?     Andrea: Absolutely, and maybe this goes back a bit to your first question. We at All of Us love learning from UK Biobank and have really seen them forge a lot of wonderful partnerships that have enriched and developed their dataset. We at All of Us have started with academia and working through partnership opportunities really intramurally at intramural centres that make up parts of the National Institute of Health. We believe that building on those close friends and family relationships we have both in the government and academia get us through our first step to be able to interface with commercial organisations. That really started with taking the first step this year to ensure broad availability of data that can maximise both use of the data available, as well as look forward to our partnership opportunities in the future.   So, commercial organisations as of 2024 have also been able to access the All of Us dataset that is that first step in thinking about what a partnership would be, and we are glad to build on the access that international organisations and academic organisations already have.   Natalie: A lot to look forward to here. We are going to have to wrap up in a moment, so I'd just like to leave you all with a final question before we have to end the podcast. There is huge ambition in all of the research programmes that you are leading and involved in, but what are you most excited about coming down the line in the next few years? What do you think is going to be feasible? What really gets you excited about the work that you are doing and where you see the potential benefits really landing in the next few years? Andrea, would you like to start?   Andrea: Thanks. There is a lot we are really excited about. I haven't had a chance yet to mention our paediatric cohort, and that in addition to expanding access for international research, in 2024 we were able to enrol our first paediatric participants. That really sets up the potential to observe participants across the lifespan. That is a huge advance for All of Us and we are excited about the paediatric work going forward.    Natalie: I love that, how do you come into the future with us? That is fantastic. Naomi.   Naomi: Yeah, if I had to choose one would be the possibility of being able to measure circulating proteins on all half a million participants. We have done this on about 55,000 participants, and just that subset alone is already generating fascinating insights for early biomarkers for disease through protein profiles and risk prediction of disease. I think having that on all half a million coupled with their genomics data and health outcomes, will bring a sea change in how we diagnose disease earlier. So, I think that is a really exciting avenue for us to go into over the next couple of years.   Natalie: Really enriching. That data sounds like a very exciting set of possibilities. Raghib.   Raghib: Thank you. There are so many opportunities here, but I will just maybe mention 3. So, the first, in terms of being able to combine the genetic data that we are collecting and all the other information about risk factors, and particularly the fact that we have this on a lot of young people, will enable us to identify people at high risk of diseases in the presymptomatic phase and then to be able to offer them both feedback about their risk of disease but also interventions that can change their natural incidences. That has never really been possible before. That is extremely important for all diseases for people, but also it is very important for our healthcare system.   So, those of you listening in the UK, I know the NHS is under a huge amount of pressure, and the current model of healthcare which has been in place really since the inception of the NHS, is to treat late-stage disease when people have already developed symptoms and signs. You know, it wasn't really possible to identify people earlier, but it is now, and Our Future Health will provide the evidence base to show that prevention really is better than cure, and to show that these approaches both lead to better clinical outcomes, but also are cost effective and a good use of resources. Of course, the new government is very much committed to this as well, you know moving from acute care to prevention, from hospitals to community, and from analogue to digital.     Finally, because our cohort has now become so large and does cover every part of the UK, and this wasn't something I necessarily thought about when we started Our Future Health, we are able to have unique insights into the health of the population across every age group, across every ethnic group, across every geographical area, and by deprivation, and to understand not just observationally in terms of risk factors, but also the impact of interventions on those different populations.   We can look at that, as I said at an individual level on millions of people to gain intelligence about what is going on in terms of public health, but also to see what will hopefully improve their health in the future. So, there are really, you know I have described transformational opportunities to improve health through both biomedical research and populational health insights now through the resource, and I look forward to working with colleagues across the UK and globally to deliver them.   Natalie: We will wrap up there. Thank you so much to our guests, Dr Raghib Ali, Professor Naomi Allen, and Dr Andrea Ramírez for joining me today as we discussed how collaboration, scale, ongoing engagement, can really unlock the potential of large-scale health datasets to drive brilliant new research and ultimately improve the lives of patients and the population.   If you would like to hear more like this, please subscribe to Behind the Genes on your favourite podcast app. Thank you for listening. I have been your host, Natalie Banner. This podcast was edited by Bill Griffin at Ventoux Digital and produced by Naimah Callachand.

In this episode, Amy Sylvis is joined by her dear friend Emily Kramer-Golinkoff, a remarkable advocate living with advanced cystic fibrosis (CF). Emily shares her journey, revealing how her experience with a fatal lung disease has paradoxically fostered an abundance mindset – driving her to focus on what truly matters. As the founder of Emily's Entourage, a nonprofit dedicated to accelerating research for those with rare CF mutations who do not benefit from current treatments, Emily discusses the importance of health, purpose, and resilience. She also touches on the stark realities faced by the final 10% of the CF community and emphasizes the need for equity in healthcare. Despite the challenges, Emily's story is one of profound clarity, gratitude, and a relentless pursuit of a better future for all those affected by CF. More about Emily: Emily Kramer-Golinkoff is Co-Founder of Emily's Entourage, an innovative 501(c)3 that accelerates research for individuals in the final 10% of the cystic fibrosis (CF) population that do not benefit from existing mutation-targeted therapies. She is also an internationally recognized patient advocate and speaker. Since 2011, Emily's Entourage has awarded millions of dollars in research grants, launched a now-acquired CF gene therapy company, developed a patient registry and clinical trial matchmaking program to accelerate clinical trial recruitment, and led worldwide efforts to drive high-impact research and drug development. The organization has been featured in media outlets, including New York Times, STAT, CNN, Yahoo, AOL, People, The Philadelphia Inquirer and more.   Emily has a master's degree in bioethics and certification in clinical ethics mediation from the University of Pennsylvania, where she also completed her undergraduate degree. She has given talks at The White House, TEDx, University of Pennsylvania's Annenberg School for Communication Commencement, Stanford University's Medicine X Conference, and more. Emily was named a “Champion of Change” for President Obama's Precision Medicine Initiative and is the recipient of the 2024 Personalized Medicine Coalition's Award in Leadership in Personalized Medicine, 2020 Philadelphia Magazine Luminary Award, and the 2016 Global Genes Rare Champion of Hope for Advocacy Award. Connect with Emily: https://www.emilysentourage.org https://www.instagram.com/emilysentourage https://www.facebook.com/EmilysEntourage https://www.twitter.com/EmilysEntourage https://www.linkedin.com/company/emilysentourage https://www.youtube.com/@EmilysEntourage Connect with Amy Sylvis: https://www.linkedin.com/in/amysylvis Contact Us: https://www.sylviscapital.com https://www.sylviscapital.com/webinar 0:00 Episode Preview 01:44 About Emily and her nonprofit, Emily's Entourage 06:54 Why Trikafta doesn't help The Final 10% 11:04 Equality problem in healthcare 13:58 The positive sides of CF 28:28 Emily's advice for more abundance 33:35 More on Emily's Entourage 38:28 Truth about drug development

On this episode of The Genetics Podcast we welcome Dr. Barbara Kraatz Fortini, Associate Professor of Genetics at Keck Graduate Institute (KGI). Tune in to learn about Barbara's research on non-coding variants in colorectal cancer and the interplay between genetics and the environment on lifetime cancer risk. As the Program Director for the MS in Human Genetics and Genomic Data Analytics at KGI, Barbara also shares her insights in genomics education for future scientists, physicians, researchers, and counsellors. You don't want to miss this riveting episode!

In this episode of The Genetics Podcast, we're joined by Dimitar Tonev, an experienced drug development consultant specialising in Hepatology and Virology. Tune in to discuss the recent reclassification of Non-alcoholic Steatohepatitis (NASH) to Metabolic Dysfunction-Associated Steatotic Liver Disease (MASLD), and the complexities of identifying treatments for this condition. Dimitar sheds light on the pioneering role of non-invasive biomarkers and comments on the potential impacts of the Maestro study. Join us as we dive into the world of liver disease and drug development, touching upon the breakthroughs, challenges, and ethical considerations of clinical trials. For anyone interested in liver health innovations and the future of hepatology research, this episode is a must-listen.

Happy Monday! The whole MR Crew is back! Sam and Emma speak with James Tabery, professor in Philosophy at the University of Utah, to discuss his recent book Tyranny of the Gene: Personalized Medicine and Its Threat to Public Health. First, Sam runs through updates on a US deal with Iran, the House GOP's impending government shutdown, Drew Barrymore officially un-resuming her show (making Bill Maher the biggest SAG Scab), and progressive action in the US, before diving into the UAW's ongoing strike and the unconditional support coming in from the White House. James Tabery then joins, diving right into his personal experience working with and within the Personalized Medicine industry, and seeing how it can (with great expense) help patients, before stepping back to analyze the greater history of precision (personal) and genomic medicine over the last three decades, with the evolution of the Human Genome Project, and the rise of Human Genome Institute figurehead Francis Collins to the director of the National Health Institute. Briefly, he then discusses Obama's Precision Medicine Initiative. Professor Tabery then walks Sam and Emma through the complicated drive behind the personalized medicine movement, with real believers (like Collins) used as lynchpins by the Healthcare and Pharmaceutical industries that would profit from a hyper-individualized and cure-based philosophy to medicine over a preventative and environmental-based one, before looking at how this has also resulted in a politicization of environmental considerations in medicine, and why – despite existing proof of environmental contributions to countless health issues – the US healthcare system remains far behind researching and addressing these problems. Wrapping up, Professor Tobery parses through the influence of this debate when it comes to research on race-based genomes for issues that could likely result from environmental factors. And in the Fun Half: Sam and Emma watch the Auto Industry leadership attempt to undermine UAW after the union essentially kept the industry alive in the wake of the 2008 Financial Crisis, also expanding on Biden's support for the UAW and the inverse being expressed by GOP Presidential hopefuls. Rylie from West Philly and Corey on I-80 expand on the union discussion, the MR Crew discusses the unsurprising Russell Brand news (and those that came to his defense), and Teacher James from Iowa discusses the epidemic of anti-LGBTQ outing laws. Ronald Raygun gives his perspective on the positive impact on unions, plus, your calls and IMs! Check out James's book here: https://www.penguinrandomhouse.com/books/622502/tyranny-of-the-gene-by-james-tabery/ Become a member at JoinTheMajorityReport.com: https://fans.fm/majority/join Subscribe to the ESVN YouTube channel here: https://www.youtube.com/esvnshow Subscribe to the AMQuickie newsletter here: https://am-quickie.ghost.io/ Join the Majority Report Discord! http://majoritydiscord.com/ Get all your MR merch at our store: https://shop.majorityreportradio.com/ Get the free Majority Report App!: http://majority.fm/app Check out today's sponsors: Tushy: Go to https://hellotushy.com/MAJORITY and use promo code MAJORITY for 10% off your first order. Henson Shaving: Henson Shaving is giving my audience a 2-year supply of blades for FREE. Just go to https://hensonshaving.com/MAJORITY. Add a razor and 100-pack of blades to your cart, then enter code MAJORITY to get the blades for free. Rhone: The Commuter Collection can get you through any work day and straight into whatever comes next. Head to https://rhone.com/MAJORITYREPORT and use promo code MAJORITYREPORT to save 20% off your entire order. Follow the Majority Report crew on Twitter: @SamSeder @EmmaVigeland @MattBinder @MattLech @BF1nn @BradKAlsop Check out Matt's show, Left Reckoning, on Youtube, and subscribe on Patreon! https://www.patreon.com/leftreckoning Subscribe to Brandon's show The Discourse on Patreon! https://www.patreon.com/ExpandTheDiscourse Subscribe to Discourse Blog, a newsletter and website for progressive essays and related fun partly run by AM Quickie writer Jack Crosbie. https://discourseblog.com/ Check out Matt Binder's YouTube channel: https://www.youtube.com/mattbinder Check out Ava Raiza's music here! https://avaraiza.bandcamp.com/ The Majority Report with Sam Seder - https://majorityreportradio.com/

In this episode of The Genetics Podcast, we welcome Dr. Konstantinos Lazaridis, the Executive Director of the Center for Individualized Medicine at the Mayo Clinic. Tune in to learn about the impacts of genomics and individualised medicine on rare liver diseases and advanced cancers . Discover how the Mayo Clinic actively uses genomic testing, precision medicine, and environmental interventions to improve patient outcomes.

People who live in major cities in the US and abroad tend to benefit from better cancer care due to having access to more doctors, facilities and equipment. In contrast, those who live in rural areas face many challenges accessing consistent and quality care.  In Part One of this ASCO Education Podcast Dr. Jack Hensold, a hematologist/oncologist in Bozeman, Montana and Chair of the ASCO Rural Cancer Care Task Force, Dr. Chris Prakash, Medical Oncologist in Paris, Texas and Medical Director of Texas Oncology and President of the Texas Society of Clinical Oncology, and Professor Sabe Sabesan, a Medical Oncologist in Townsville, Australia and the President-Elect of the Clinical Oncology Society of Australia will examine the realties practicing oncology in rural areas.  They discuss the difficulties of having to travel long distances for treatment (5:30), the effectiveness of telehealth (8:07) and solutions to recruiting a supportive care workforce in rural areas  and facilitating access to imaging facilities and specialized treatment (18:12). Speaker Disclosures Sabe Sabesan: Speakers Bureau - Merck Sucharu Prakash: Speakers Bureau - Myriad Genetics   Jack Hensold:  Consulting or Advisory Role Company - Vibliome Therapeutics Resources  Policy Recommendations for Improving Rural Cancer Services in the United States  If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org. TRANSCRIPT Disclosures for this podcast are listed on the podcast page.  Dr. Jack Hensold: Hello and welcome to this two-part episode of the ASCO Education Podcast. Today we will explore some real-time and real-world issues that oncologists face while practicing in rural areas in the US and abroad. Cities tend to benefit from having more doctors, facilities, and equipment to address the health needs of the population. In contrast, people who live in rural areas – estimated to be about 25% of the US population – face various challenges to obtaining consistent health care, including scarce medical personnel and infrastructure. Transportation of that care may involve considerable time and financial expense.  I'm Dr. Jack Hensold, the Hematologist/Oncologist in Bozeman, Montana, and Chair of the ASCO Rural Cancer Care Task Force. I also serve as Medical Director of Regional Outreach at Bozeman Health. Joining me is Chris Prakash, Oncologist and Medical Director of Texas Oncology and President of the Texas Society of Clinical Oncology. Chris is also the Director of Quality Services for the statewide group and leads Texas Oncologist's Precision Medicine Initiative.  Also joining me is Professor Sabe Sabesan, a Medical Oncologist in regional Australia. He is the President-Elect of the Clinical Oncology Society of Australia and Clinical Director of the Australian Teledyne Health Program, led by the Queensland State Department of Health. Professor Sabesan is an internationally recognized expert in the area of tele-oncology. He has developed and evaluated various oncology models to deliver cancer care closer to home.  Providing healthcare is a very involved career, more so in rural areas. Dr. Prakash, you finished your oncology training in Detroit, yet you practice primarily in rural Texas. Can you detail the factors that led to your decision in practicing oncology in a rural setting?  Dr. Chris Prakash: Thank you, Jack, for having me as part of this podcast. I finished my fellowship at Wayne State in Detroit, Michigan, and we were looking for a place to raise our kids and family and to find a good practice for myself. My daughter was two years old at that time. We were looking for a quiet, safe place with a laidback lifestyle, but at the same time a dynamic oncology practice. That's how I found East Texas, which is primarily a rural area. The small community here, good schools, and nice, accepting people really appealed to us. So we decided to give it a chance. We are still here almost 23 years later. My daughter has grown up and is in medical school. My son, who was born in Paris, Texas, is planning to go to med school next year.  Over the last couple of decades, I've found that practicing oncology in a rural setting is indeed very rewarding. You can make a difference in people's lives here. People are simple. They have faith and respect and follow doctors' advice. Practicing here, I've had a real chance to make a difference in not only people's lives but also in the overall healthcare system and in health policy. As you know, Jack, about 18% to 20% of the population lives in rural areas in the US. But only 3% of oncologists are available to provide care for them. So I'm not only fulfilling a need but also satisfying a desire to contribute.  Dr. Jack Hensold: Chris, could you clarify the nature of your practice? Are you a solo oncologist within a much larger group spread out over the state, or is there more than one oncologist on your site? Dr. Chris Prakash: Yeah, so I'm part of Texas Oncology, which is a statewide large group with multiple sites of service. In my location, there are three medical oncologists and one radiation oncologist. So we serve the catchment area of Northeast Texas and Southeast Oklahoma. But within Texas Oncology, we have locations spread out all over the state. Dr. Jack Hensold: Thank you for that clarity. Professor Sabesan, you started in Sri Lanka and are now in a rural area of Australia. How did that happen?  Professor Sabe Sabesan: I grew up in northern Sri Lanka in a village but moved to Australia because of the war in Sri Lanka in ‘90. So I did my med school in Adelaide, Australia. During my med school, we had to do a lot of rural clinical placements. And also as a result of that, I did my internship in a central Australian town called Alice Springs. Throughout that journey, I saw firsthand the difficulties these communities face in accessing healthcare, basic healthcare. So when I finished my training in medical oncology, I was looking for a place where I could contribute to minimizing these difficulties, but also taking an academic angle to this. So I chose a regional center called Townsville in North Queensland as our home that actually serves a large rural and indigenous population, but also it is an academic hub for rural medicine. So it kind of served my clinical and academic needs, and we've been there last 20 years now. Dr. Jack Hensold: A significant hurdle for patients in rural areas is transportation. Patients sometimes travel an entire day or stay overnight near the clinic, where they will be examined or treated. What resources have been developed to assist with transportation to help patients come back for test results, appointments, and treatments? Chris?  Dr. Chris Prakash: Transportation, that's a big hurdle for many patients across the country, but mainly for the rural population. So, as I just said, my practice is in Paris, Texas, but the draw is about a quarter of a million. So patients come to see us here to receive their medical care from all over Northeast Texas as well as Southeast Oklahoma, and there is no public transportation in many of these areas. The average time to commute for many of my patients is in excess of an hour and a half each way. Patients do travel sometimes an entire day. They sometimes have to stay overnight to receive their treatments the next day.  I recall a patient with tonsillar cancer last year who was receiving concurrent chemotherapy and radiation. So he lived almost three hours away. This was too cost prohibitive for him to travel back and forth on a daily basis for radiation therapy. So what he did was set up his camper right behind the cancer center, which certainly made it a lot easier for him to get his treatments that way. I would not recommend that as a routine practice for everybody, but it did work out for him   Close by there is a community of Choctaw Indians here in Southeast Oklahoma also, and they do have some options for transportation for just their citizens. And locally, some local church groups and volunteer organizations provide assistance with transportation for some patients as well. But that is a problem. Transportation is a big access issue for my population. Dr. Jack Hensold: Thank you. And just to make a comment, there's actually a fair amount of literature regarding what we refer to as financial toxicity associated with the need to travel. Sabe, do you have some transportation problems in your area? I would assume… Professor Sabe Sabesan: This is similar to what Chris and you are describing, Jack. Our area is 2000 by 1000 kilometers with about 650,000 population. There are scattered rural hospitals, but really there's no consistent public transport. But the government does pay for transport and accommodation. I heard that it doesn't fully cover it. But one of the disappointing things is that if you're traveling for clinical trials, that subsidy is not there for them. So that's probably one of the reasons why the governments have gone for the telehealth investment.   Dr. Jack Hensold: Thank you. Telehealth is a critical tool for providing healthcare in many areas, including rural areas. How do you manage the health literacy problems of ethnically, educationally, and socioeconomically diverse populations using telehealth? Chris? Dr. Chris Prakash: Telehealth has been around for a long time, but during the pandemic, that's when we needed to keep our patients safe and away in their homes and still continue to give healthcare to them. So we conducted many visits through telemedicine at that time. Telehealth is especially used for many patients in rural areas because they have problems with access. But there are many challenges. As you know there is a broadband divide in the US. About 1 in 4 Americans do not have a good broadband connection so it is very difficult for them to perform a video telehealth visit. Audio works out okay a lot of times, but to do a good video telehealth visit, that's a difficulty.   Also, as you know, many of the flexibilities that we were afforded during the pandemic regarding telemedicine, they are slowly going away. So that's making telemedicine even more difficult to do. But telemedicine is a boon for many of the patients who live in rural areas. I remember just the other day I saw an elderly couple, the man had just been diagnosed with advanced lung cancer. In the room, he requested that his children join the conversation via FaceTime on his phone so that they can listen in to what I had to say and what I had to tell them. This was indeed very helpful for them. I was able to explain to the patient, his wife, as well as his children who joined via FaceTime about the diagnosis, which was new, the treatment plan, expectations moving forward, and all of that.   So even though this was not a true televisit, it really demonstrates how technology can help us deliver good communication and good oncology care in many situations. But still, I would say that for many patients, telemedicine is not ideal. It's especially true given the devastating diagnosis of cancer. Patients want to see their doctors face-to-face. As a doctor, I want to examine them. And also, body language is very important. It is important for my patients to trust me as a physician, and that's hard to do sometimes via video chat.  So right now my nurse practitioners do a lot of chemo teaching through telemedicine. Now that is really helpful for them because this can be done over multiple teaching sessions, it makes it a lot easier for the patient. Because rather than coming into the clinic for all these visits, they can learn from the comfort of their homes before they really start the toxic chemotherapy.  Dr. Jack Hensold: Chris, thank you for that. I think that you make a very valid point and one that I've made, which is that telehealth is a great tool for overcoming geographic barriers in rural areas. But I think we just simply have to accept the fact that it's not as good as a face-to-face visit. So how we blend the use of telehealth with face-to-face visits I think is going to be a challenge moving forward. Dr. Chris Prakash: Yeah, I totally agree. I think toxicity management is great. I mean, it's a great tool to call and see how patients are doing after treatment. But that initial visit, there's something to be said about establishing a rapport and faith and trust in your doctor when you're treating cancer. Dr. Jack Hensold: I completely agree. Sabe, you sound like you're one of the experts in Australia regarding telehealth. I wonder if you have some comments about your experience. Professor Sabe Sabesan: Yeah, I would say it's an evolving experience which has evolved over 15 years. So in terms of the health literacy needs, my observation is actually the same whether it's in person or in telehealth. What we observed is that we just need to tailor to the patient's needs. When we first developed the telemedicine, we had the same issues, developing rapport and seeing first consultations in person. But what we did, we started doing a lot of shared care models and tele supervision models with rural facilities rather than directly into homes. So what that meant, we had patients' families can attend, especially the primary care physicians, and the rural nurses were able to sit in with the patients. So that means if there were any communication issues or any translation aspects, language-wise or explaining medical lingo, there was a system in place in the rural sector that is close to home that was provided by the primary care physicians and the families.  And also then from that experience, we did some research and the patients actually said they were happy to continue initial consultations on the telehealth consultation, provided there were families involved, the primary care physicians were in there, and also the aboriginal health workers. So for some regions now we do the initial consultation purely on telehealth because what also what telehealth does for the first consultation, if we need to then bring them to our center, then we would be able to coordinate the whole trip rather than coming back and forth. So that's actually probably the difference in a couple of the larger centers. But the other main benefit I actually found for indigenous patients is that we can involve the whole family in the patient care and normally that means they are able to ensure compliance and compliance with clinic visits. So it's been evolving but really it is what our models, some of them are tele-oncology replacing face-to-face, some of them are hybrid, some of them are treatment-related. So it's really based on the needs of that little communities. That's what we've been doing. Dr. Chris Prakash: If I can ask you a question Sabe, on that, do you experience barriers to practice across state boundaries in Australia? Because I know in the US that's a big issue, that's a hurdle. Licensing is an issue across state boundaries and also broadband issue because a lot of my patients, they simply don't have the broadband width to get on a video chat. Do you experience that in Australia as well? Professor Sabe Sabesan: So we definitely have the broadband divide in Australia, but luckily the state governments have actually invested heavily on fiber. So all the health facilities, whether they are small or large, they are all connected on fiber. So if you do video calls or telehealth within that system, it is pretty good. But as soon as you go outside to a primary care facility that is not part of a state facility or home, you run into trouble with broadband. But in terms of the state boundaries, I think it is a bit loose. I don't know whether there's actually a strict monitoring of the systems, but because the whole Australian system is funded by Medicare, it really doesn't matter where the patient lives as long as you bill the patient based on the consultation. Dr. Jack Hensold: And I'd like to just respond to something you said, Sabe, too, which is the involvement of primary care doctors and local healthcare workers in the care of patients, is something I will return to later in this conversation. But I think it's important that we consider when we're keeping patients out of our larger centers and treating them in their own home areas, that we are relying on supportive care by those primary care providers. Any other comments regarding the telehealth issue?   Professor Sabe Sabesan: In terms of the primary care shared care models and collaborations, that is actually one of the important aspects of telehealth because we have in the rural sector, the turnover of the staff is pretty high. So then what happens if we want to provide consistent medical service on telehealth? Something needs to be consistent so we become the consistent aspect of the partnership. So then that gives us bit more safety that there's a shared care model, but also what we found now that in terms of educating on oncology topics, the shared care models actually give you an opportunity for case-based discussion. I think there is a benefit for workforce development as well, as well as connecting the rural workforce with a network of workforce. Dr. Chris Prakash: Involving primary care physicians in the total care of the patient is vital, especially in rural areas because they really depend upon their PCPs and often these are APPs providing their primary care. You've got to manage their diabetes and hypertension and go through all their medications, antiemetics pain medications, work with the local pharmacy. There are so many issues that go into treating a patient with cancer and as an oncologist sitting 100 miles away, I'm not going to be able to take care of every detailed aspect of their care. So what I do is involve their primary physician from the very beginning. So when the patient first comes to me, it could be via telemedicine or not, I'm calling them back and saying, “Hey, I saw so and so. This is my diagnosis, this is my plan. I'm going to do all the treatments here at my center. But whatever's possible you can do locally, I would appreciate that.” If there's labs that can be drawn, imaging that can be done locally, any testing that can be done locally, patients really value that because they don't want to travel 2 hours just for a CT scan if they can avoid it. That's my practice.   Dr. Jack Hensold: Thank you. You mentioned something that we're going to touch on next, which is that in rural areas it is often difficult to access labs, imaging facilities, and other specialized treatments, certainly CAR T therapy and other highly technical therapies. There are other services that may be limited in a rural area such as mental health, fertility preservation, palliative care, access to social workers. Do you have solutions to address that really supportive care and those needs? Dr. Chris Prakash: Yeah, I think, Jack, you touched on a very, very critical challenge right now. It's a workforce issue. It's very hard to hire and keep good support staff not only in rural areas but all over the country right now. So you mentioned social workers, nurses, nutrition specialists, mental health providers, even fertility services. They're very hard to find in rural areas. There's a big workforce problem, right, all over the country. But the pandemic really exacerbated that. I mean, it's hard to find good staff anywhere and there's no easy solution to fix this problem. So what we need to look for is maybe provide incentives such as loan forgiveness programs or tuition payment programs, or repayment. Really anything that keeps professionals in rural settings. And we need to find people who like working in these areas because that's a very difficult problem as well.  And as you know, many specialized treatments, stem cell transplants, CAR T cell therapy, specialized neurosurgeries or cardiothoracic surgeries, or many oncologic surgeries, they can only be done at big tertiary centers in big cities often. So patients have got to travel a few hours to go there. So what we can do to make it easier on them is provide the first consultations with those specialists via telemedicine. And if they're thought to be good candidates for the procedures, then they can make a trip that's necessary to the city, let's say. But also you mentioned consistency, that is the key. It's very important to be consistent if you want to provide quality cancer care. It could be imaging, it could be diagnostics, molecular testing, or any kind of therapy that you deliver. They should all be consistent no matter where a patient is being treated. So that brings into question provider education. Many oncologists in rural areas, they're generalists, they treat all cancers. They do not specialize in one area. It's really hard to keep up with all the latest information that's coming out. So it's important that we provide all educational tools possible to keep them up to date.  I just moderated a meeting called Oncology Congress. So this is geared towards cancer care providers in rural areas. It's a free CME webcast, various topics on cancer, excellent faculty, and the main thing is that the discussion is geared towards improving multidisciplinary care in those rural settings. So I think another thing that we could think of as a solution to this problem is virtual tumor boards. I mean, they're very helpful where somebody can get on and get an opinion regarding a difficult case. But I think most helpful is if you have a network of doctors or specialists that you can rely on, you can call somebody, a quick consult or say, “Hey, I have a problem, a challenging case, what would you recommend?” Because sometimes we just don't have time to wait for that tumor board or wait for an official consultation. So, yeah, it's a difficult challenge. Dr. Jack Hensold: Yes. And again, a point that you made that I'd like to respond to is the virtual tumor boards and basically shared education with maybe a larger group. As we've kind of in Montana looked at a development of hub and spoke models, we've realized it may make sense to consider a hub and spoke communicating with a spoke and hub. In other words, a larger center with what becomes the hub for a smaller community, and then that reaches out. So there's a series of educational connections that need to be made. Dr. Chris Prakash: Yeah, I think you almost need multiple hubs. One central big hub in this day and age is probably not going to help solve that problem. So you got to have a big hub and then maybe a series of regional hubs where patients can easily access and doctors can access information. Dr. Jack Hensold: Yes, I think that's absolutely correct. The education piece, too, is, I think, something that keeps oncology practitioners out of smaller communities where they may be practicing by themselves. Because it's difficult, as you know, as an oncologist, to feel like you're staying current with everything you need to stay up to date with, and therefore practicing in a larger group where you can turn to someone else for some immediate education.  Dr. Chris Prakash: That's very true. And if you really look at what these CME programs or educational programs are geared to, none of them are geared towards rural practice. They talk about big clinical trials. And those populations are really not my patient population, for sure. So you really need a program where people who know rural medicine, who have experienced it firsthand, like you, me, and Sabe, and say, “Okay, this is what really happens. You cannot give CAR T therapy to every Lymphoma that walks in.” I think those are the kind of educations we are talking about. There's so many educational programs that are available, but not many for rural practitioners. Dr. Jack Hensold: Right. And it does speak to whether or not we need to be thinking about developing some type of education that's easily accessible to those very busy practitioners who may be a solo practitioner with no one around for hundreds of miles, I guess.  Dr. Chris Prakash: And not to throw in a plug for my conference, but the Oncology Congress that I do twice a year, that's the sole purpose. We will have faculty from big centers. But I make sure that the conversation moves towards rural settings where we do not have all the latest technologies and the therapies available. And we had a really good turnout this past weekend, so I'm happy to share information if anybody's interested.  Dr. Jack Hensold: Yes, that would be great. Again, I think this conversation has been terrific because I've really become focused on the issue of the inadequate education we have not only for our oncologists who are out in practice in smaller areas but also for the primary care providers who need a better understanding of what's required for supportive care of oncology patients. And there's very limited material that focuses on that as well.  Dr. Chris Prakash: Totally agree. Just one last point I want to make is with the checkpoint inhibitors. That's a perfect example. Many of these toxicities are multi-organ, and the patients in the community, the docs in the community sometimes are not aware of the skin rash or lung symptoms, or pneumonia is really related to the therapy. So very important to involve the whole team in their care. Dr. Jack Hensold: Completely agree. Sabe, what about your experience in this regard? Professor Sabe Sabesan: Exactly the similar experience Chris has been describing. Another group of rural people, there are actually smaller rural communities. Sometimes they are like 500 or 1000 population maximum. So those kinds of places, they completely miss out because they are too small even for standard general medicine specialties. What we've been observing over time or focusing on is really how do we build those capabilities at rural sites because if they keep doing the same stuff, then they are not going to grow or build. So what we've been doing is let's build some rural capabilities and let's also focus on expanding the scope of practice. So to do that, we actually have to start shifting specialist services like chemotherapy administration or rheumatology infusions back to those smaller towns. And then we have to utilize tele-supervision and share care models with allied health and the rural health workforce. So when that happens, we need more staff because there are more activities happening.  And what we found in the western Queensland town of Mount Isa before 2007, maybe a few chemotherapy patients had to travel for everything. Over time we shifted all the chemotherapy and biotherapy to that 20,000 population town. That meant that over that ten years they had more resources from the government, more staff like registrars and residents, and also needed infrastructure. So that gave us some confidence that maybe we have to leverage the telemedicine technologies to build rural systems, not just seeing patients.  Dr. Jack Hensold: Thank you Dr. Prakash, for your insight into this topic and also to Professor Sabesan for his perspective from his practice in Australia. In part two of this podcast, we will explore how the difference between American and Australian healthcare systems impact care for rural patients, the need for advocacy from doctors in a pilot project in Montana I'm working on with ASCO.  I'm Dr. Hensold and I would like to thank all of our listeners of the Cancer Topics ASCO Education Podcast. This is where we explore topics ranging from implementing new cancer treatments and improving patient care to oncologist well-being and professional development. If you have an idea for a topic or guest you'd like to hear on the show, please email us at education@asco.org. To stay up to date with the latest episodes and explore other educational content, visit education.asco.org. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.   Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.        

COR2ED Medical Education: In this podcast, Prof. Jonathan Trent and Prof. Robin Jones discuss what’s new in the patient management in sarcoma from CTOS 2022. The Connective Tissue Oncology Society is an international group of physicians and scientists with a primary interest in the tumours of connective tissues. With nearly 600 attendees, 10 sessions specific for sarcoma, and over 300 posters, CTOS 2022 took place between November 16 and 19 in Vancouver, BC, Canada. Clinical practice and patient management highlights covered in the podcast include insights from the DEFI study on desmoid tumour, the REECUR study for Ewing sarcoma, and the ENLIVEN study for gastrointestinal stromal tumor (GIST). In addition, early studies with potential clinical impact are discussed. Prof. Jonathan Trent is Associate Director for Clinical Research, the Director of the Bone and Soft-tissue Sarcoma Group and Medical Director of the Precision Medicine Initiative at the Sylvester Comprehensive Cancer Center in the University of Miami Health System, Miami, FL, USA. Prof. Robin Jones is Head of the Sarcoma Unit at The Royal Marsden NHS Foundation Trust, London, UK.

“It's still early days in the application of all this technology relative to its long-term potential, but even so, it's already producing some big wins for patients,” says Dr. Matthew Might, whose impactful career in computer science and medicine has been shaped by the rare disease odyssey of one of his children. His son, Bertrand, was the first person in the world diagnosed with a particular form of NGLY1 deficiency, a neurogenic degenerative condition that causes developmental delays, seizures and frequent infections. Unfortunately, Bertrand succumbed to an infection at the age of twelve in 2020 but by that time, Dr. Might's work in precision medicine had led to crucial discoveries for dozens of children with NGLY1 deficiency. Now, as director of the Hugh Kaul Institute of Precision Medicine at the University of Alabama at Birmingham, he uses an AI-based system programmed to connect the dots in extensive databases of medical literature to make inferences about potential therapies for uncommon diseases. Check out this fascinating conversation with host Shiv Gaglani about the promise of this approach, the challenges in repurposing drugs and conducting clinical trials in the rare disease community, the need for more genetic counselors and Dr. Might's work on President Obama's Precision Medicine Initiative, which he calls the Rosetta stone of the human genome. Mentioned in this episode: https://www.uab.edu/medicine/pmi/ 

With the ambitious goal of enrolling more than 100,000 participants within five years, the My Reason campaign aims to build the largest kidney-focused genomics registry of its kind. Dr. Michael Anger, Principal Investigator for the My Reason Genomics and Precision Medicine Initiative, and Jeffrey Carr, Head of Genomics and Precision Medicine, join Field Notes to discuss the significant impact My Reason will have on improving outcomes for kidney disease patients.

On this episode, Ami Kassar interviews Rhett Buttle, Founder of Public Private Strategies, on the Biden Administrations' small business agenda: How things are going and what's next? Rhett Buttle is the Founder of Public Private Strategies (PPS). PPS creates opportunities where the public and private sectors meet bringing together diverse allies including foundations, associations, corporations, small businesses, and entrepreneurs to solve pressing societal challenges. By harnessing the power of the private sector, PPS build coalitions, activate campaigns, and create strategic partnerships to drive desired policy and market outcomes. Rhett is also a Senior Fellow at The Aspen Institute. In his role at Aspen, Rhett focuses his efforts on advancing the innovative Reconnecting Work and Wealth Initiative – a cutting edge effort at the Aspen Institute that engages several of the Institute's largest policy programs and their stakeholder networks in an ambitious re-visioning of the ways that 21st Century labor and financial markets can deliver inclusive growth and shared prosperity. Before founding Public Private Strategies, Rhett was the Business Engagement Director at Hillary for America serving as Secretary Clinton's liaison and private sector advisor during her run for President. Before joining the campaign, Rhett was President & Managing Director of a national business advocacy organization where he led an organization of over 25 people actively doing policy and advocacy work both nationally and in 10 states across the country. In 2014, Rhett was appointed by President Obama to The White House Business Council and served as the Director of Private Sector Engagement in the Office of the Secretary at the U.S. Department of Health and Human Services. In this role, he was the main liaison between the department and the business community. He is an expert on healthcare policy issues as it relates to the employer community. He worked on the implementation of the Affordable Care Act, public private partnerships for the Ebola response & the President's Precision Medicine Initiative. He was a key player in the Administration's effort to transform the healthcare system to one that is more focused on value and patient centered care. Buttle has also served in the Office of the President at George Washington University, in the Office of California Governor Arnold Schwarzenegger, and has worked on several presidential, state, and local campaigns. Rhett frequently engages with the media and has been featured in the New York Times, CNN, WSJ and several business publications. He has spoken on business issues at the Aspen Institute, the Harvard Institute of Politics, and the Center for American Progress. He also serves on the boards of several organizations. Rhett holds a bachelor's degree from the University of San Diego and a master's degree from The George Washington University. In addition, he is active in many volunteer & professional organizations including American Legion Boys State. Rhett was born and raised in Las Vegas, NV. In 2016, he was honored by the US Hispanic Chamber of Commerce and the National Gay & Lesbian Chamber of Commerce as their Business Advocate of the Year. Recorded 09/29/2021.

Meet Dr. Eric Topol:Dr. Eric Topol is a cardiologist, scientist, and author. He is the Founder and Director of Scripps Research Translational Institute, and the Executive Vice-President of Scripps Research. He has published over 1200 peer-reviewed articles and is one of the top 10 most cited researchers in medicine. In 2016, Dr. Topol received a $207 million grant from the NIH to lead a portion of All of Us, part of the Precision Medicine Initiative. He is the author of three books on healthcare and is known for his commentary on patient-centered care and artificial intelligence. Key Insights:Dr. Eric Topol is an expert in healthcare personalization and has gained traction on social media for his commentary on COVID-19. Our discussion covers a variety of pandemic response topics, and broadens to the applications of artificial intelligence in the future of healthcare. COVID-19 Response. We discuss testing (13:55), breakthrough cases (16:41), mix and match vaccinations (20:21), hybrid immunity (23:22) and more about COVID-19. Institutional Trust. The pandemic has decreased trust in some government agencies, Dr. Topol describes how it can be won back. (27:10) Artificial Intelligence. Dr. Topol dives into the application of artificial intelligence and deep learning in the future of healthcare. (31:31) Democratization of Medicine. Patients yearn for more control over their care and health data, and are the future of healthcare innovation. (42:11)

Claudia previously served as Senior Advisor for Health Technology and Innovation at the White House, helping to lead President Obama's Precision Medicine Initiative. She believes that the next step to improve healthcare in America is to unlock information from its silos and put it in the hands of innovators. Do you have any thoughts? Please email us at hello@rosenmaninstitute.org. We post new episodes every Monday. “The Health Technology Podcast” is produced by Herminio Neto, hosted by Christine Winoto, and engineered by Andrew John Rojek.

The VFW organization helps veterans to thrive by keeping veterans informed, engaged, and educated about all the benefits and programs available to them and their families. This podcast highlights how additional financial and charitable donations are collected and utilized, unique programs for minority veterans, and how veterans can continue to be of service through medical research. During this episode of The VFW Podcast, Host Terrence Hayes chats with Executive Director of the Center for Minority Veterans, Stephen Dillard who discusses the wonderful work his team does to ensure our minority veterans have the health care, benefits, and entitlements they have earned. Director of the VFW Foundation, Richard Potter, discusses the 25th anniversary of the foundation and what lies ahead as they continue to seek ways to best serve our amazing veterans, service members, and families. Drs. Chris O'Donnell, Chief of Cardiology and Director of the Center for Population Genomics, VA Boston Health Care System, and Phil Tsao, Assistant Chief of Staff for Precision Medicine and Director of the Palo Alto Epidemiology Research and Information Center for Genomics, discuss the All of Us Research Program and how this program helps ensure veterans are represented in this historic effort to speed up biomedical breakthroughs.   Executive Director for the Center for Minority Veterans, Stephen Dillard —   Stephen offers an overview of the Center for Minority Veterans and details the people served by the organization. [2:01] How the VFW and Center for Minority Veterans collaborate. [5:22] Information about the benefits available to minority veterans and their families. [6:50] The Minority Veterans Advisory Committee consults and advises the Center for Minority Veterans. [10:48] The Minority Benefits Summit is postponed due to COVID-19. [14:35]   Director of the VFW Foundation, Richard Potter —   Richard explains the creation and the purpose of the VFW Foundation. [17:26] How the VFW Foundation and corporate sponsors support veterans and service members. [20:04] The VFW Foundation has provided financial relief to VFW community posts during the COVID pandemic. [27:55] The VFW Foundation is celebrating its 25th anniversary. [30:51]   Dr. Chris O'Donnell and Phil Tsao, Ph.D. —   Dr. O'Donnell shares the goals and accomplishments of the Precision Medicine Initiative. [36:36] How veterans can join the All of Us program and how the program benefits veterans. [38:14] Over 250,000 veterans participate in the ongoing All of Us program. [41:18] The genetic feedback veterans receive from participating in the program. [43:02]   For more information or continue the conversation, please visit: Veterans of Foreign Wars Website VFW Podcast Page @VFWHQ on Twitter VFW on Facebook VFW Unmet Needs Program Call 1-888-JOIN-VFW Text “NEEDS” to 20222 to donate to the Unmet Needs Program Center for Minority Veterans VFW Foundation All of Us Program — 1-833-805-0426  

The importance of the US to the global pharmaceutical industry cannot be overstated. Home to many of the sector's best performing companies, the country's relatively lighter drug pricing controls and government support for R&D make it an extremely lucrative market to operate in. After an enthralling US Election, Democratic nominee and former Vice-President Joe Biden is now US President Elect. While there is no doubt that his overall vision will differ immensely from that of outgoing President Donald Trump, it is less clear whether the new administration will mean big changes for healthcare and pharmaceuticals. In this interview with Peter Loge, former senior advisor to the Food & Drug Administration Commissioner in the Obama Administration, we seek to shed some light on the potential impact of Biden's election on issues that directly affect the industry, including drug pricing, manufacturing and R&D. About the Speaker: Peter Loge, Associate Professor of Media and Public Affairs, School of Media and Public Affairs, George Washington University Peter has over 20 years of experience in communications including a presidential appointment at the Food and Drug Administration and senior positions for Sen. Edward Kennedy and three members of the US House of Representatives. He currently leads the Project on Ethics in Political Communication at the School of Media and Public Affairs. Prior to joining the full-time faculty at SMPA, Peter served as a senior advisor to the commissioner of the Food and Drug Administration in the Obama administration, a presidential appointment. In this role, he developed and helped lead the strategic communication efforts for some of the top White House and FDA health priorities including the Cancer Moonshot, the Precision Medicine Initiative and combating the opioid crisis.

My guest this week is Esteban Burchard an expert in pharmacogenetics and asthma. Esteban’s prolific scientific contributions have been featured on Science Friday and other shows. He also served on President Obama’s Precision Medicine Initiative. I was particularly excited to discuss issues of Diversity, Equity, and Inclusion with him, as he is a leader in emphasizing the importance of studying drug response across diverse individuals.

Today we're talking about Precision Medicine with Anil Bajnath, MD, MBA, MIfHI, CEO and Founder of The Institute for Human Optimization and an Adjunct Assistant Professor in the GW School of Medicine and Health Sciences. The NIH describes Precision Medicine as "an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person." Dr. Bajnath is conventionally trained in Family Medicine and Integrative Medicine Throughout the span of a decade, he has cultivated extensive first-hand experience in Precision, Integrative, Functional and Genomic Medicine. And he's paying it forward by teaching Precision Medicine to grad students in GW's Integrative Medicine Programs. ◘ Related Content NIH: What is the Precision Medicine Initiative? https://ghr.nlm.nih.gov/primer/precisionmedicine/initiative Sung Symposium: Next Generation Health https://www.youtube.com/watch?v=Xlf3jhJNBDk&feature=emb_logo Health IT Analytics: What Are Precision Medicine and Personalized Medicine? https://healthitanalytics.com/features/what-are-precision-medicine-and-personalized-medicine Who Will Benefit From Precision Medicine https://www.ucsf.edu/magazine/benefit-precision-medicine ◘ Transcript https://www.linkedin.com/pulse/transcript-what-precision-medicine-integrative-medicine-and-health/?published=t ◘ This podcast features the song “Follow Your Dreams” (freemusicarchive.org/music/Scott_Ho…ur_Dreams_1918) by Scott Holmes, available under a Creative Commons Attribution-Noncommercial (01https://creativecommons.org/licenses/by-nc/4.0/) license. ◘ Disclaimer: The content and information shared in GW Integrative Medicine is for educational purposes only and should not be taken as medical advice. The views and opinions expressed in GW Integrative Medicine represent the opinions of the host(s) and their guest(s). For medical advice, diagnosis, and/or treatment, please consult a medical professional.

As regulatory battles rage over data privacy and monopoly laws, we often think of Silicon Valley and Washington D.C. as separate worlds. Yet nothing could be farther from the truth. Historically, technologies like silicon chips and the Internet were rooted in huge government investment, leading to America's ascendance as a technological and military superpower. In this episode of Rebuilding Government, I’ll be chatting with DJ Patil—an expert on public-private cooperation on technology. He was former Chief Data Scientist of the U.S., where he pioneered national data initiatives across precision medical care, police transparency, and national security. DJ is currently the CTO of Devoted Health, a healthcare company serving seniors, and he previously built the first Data Science team at LinkedIn. Based on his wide-ranging experience, DJ has a real empathy for the challenges that these different sectors face in using technology for social good. We chat about his pathway to public service, what data ethics can learn from medicine, and advice for college students seeking a high-impact career. *Find us on Twitter @RebuildingGovt and your host @jasminewsun. * Relevant resources: * DJ Patil on Twitter, LinkedIn, and Medium @dpatil * Precision Medicine Initiative https://obamawhitehouse.archives.gov/precision-medicine * The 5 Cs of data science https://medium.com/@dpatil/ethics-data-science-ff21d0c29346 * Tuskegee syphilis experiment https://www.cdc.gov/tuskegee/timeline.htm * Henrietta Lacks https://en.wikipedia.org/wiki/Henrietta_Lacks * Nuremburg Code https://history.nih.gov/research/downloads/nuremberg.pdf * The Power by Naomi Alderman Rebuilding Government is a podcast in collaboration with UNIT Innovations (@unitinnovations) and Teske Media (@teskemedia).

Large scale data collections are available to academics and medical researchers, but who participates and who has access is often up to a coordinating entity that owns the data. The All of Us research program is an effort from the Precision Medicine Initiative that aims to change this. With a goal to collect data from more than one million voluntary participants, All of Us will serve as a public data repository for everyone from educators to medical researchers that will provide data from all populations, including healthy people and populations that have typically been overlooked in clinical trials and medical research efforts. In this episode, we'll take a closer look at All of Us through discussion with one of its data curation leads, Dr. Robert Carroll of Vanderbilt University Medical Center. We also talk to USF Health's Director of Informatics and Analytics programs, Dr. Athanasios Tsalatsanis, following his attendance at a conference for the American Medical Informatics Association, where All of Us was a big topic of discussion. To find out more about educational opportunities with USF Health, click here. To keep up with trends around health IT, learn more about our students and find out what’s going on at USF, bookmark our resources section!

The American Sleep Apnea Association was founded in 1990 with a goal to administer and nurture a new model of sleep apnea peer support groups. Adam Amdur has been the Chief Patient Officer  since 2014 and in a wide ranging conversation we talk about the work of the ASAA, dispel some of the myths and misperceptions about sleep apnea, and discover how patients can find help and support from the ASAA. This episode's guest: Adam Amdur is the Chief Patient Officer of the American Sleep Apnea Association. He was diagnosed with severe obstructive sleep apnea in 2008, more than thirty years after he first showed symptoms. As the first patient principal investigator and co-founder of the Sleep Apnea Patient-Centered Outcomes Network, a part of the National Patient-Centered Clinical Research Network, Adam worked to bring together patient leaders from other networks in order to discover a common patient voice as it relates to research best practices and collaboration with diverse stakeholders. He has increased awareness through multiple media interviews and has been a lead presenter at the National Institutes of Health’s Precision Medicine Initiative.   LinkedIn: https://www.linkedin.com/in/adam-amdur-7b794310/ More Resources: American Sleep Apnea Association: https://www.sleepapnea.org/ Facebook: https://www.facebook.com/sleepapneaorg/ Twitter : https://twitter.com/sleepapneaorg SleepApnea.org Youtube channel: https://www.youtube.com/channel/UCI_rc835UoOe-r_J7mJYzNA LinkedIn: https://www.linkedin.com/company/american-sleep-apnea-association/ Episode Homepage: https://sleepjunkies.com/sleep-apnea-org/ More Episodes:

The American Sleep Apnea Association was founded in 1990 with a goal to administer and nurture a new model of sleep apnea peer support groups. Adam Amdur has been the Chief Patient Officer  since 2014 and in a wide ranging conversation we talk about the work of the ASAA, dispel some of the myths and misperceptions about sleep apnea, and discover how patients can find help and support from the ASAA. This episode's guest: Adam Amdur is the Chief Patient Officer of the American Sleep Apnea Association. He was diagnosed with severe obstructive sleep apnea in 2008, more than thirty years after he first showed symptoms. As the first patient principal investigator and co-founder of the Sleep Apnea Patient-Centered Outcomes Network, a part of the National Patient-Centered Clinical Research Network, Adam worked to bring together patient leaders from other networks in order to discover a common patient voice as it relates to research best practices and collaboration with diverse stakeholders. He has increased awareness through multiple media interviews and has been a lead presenter at the National Institutes of Health's Precision Medicine Initiative.   LinkedIn: https://www.linkedin.com/in/adam-amdur-7b794310/ More Resources: American Sleep Apnea Association: https://www.sleepapnea.org/ Facebook: https://www.facebook.com/sleepapneaorg/ Twitter : https://twitter.com/sleepapneaorg SleepApnea.org Youtube channel: https://www.youtube.com/channel/UCI_rc835UoOe-r_J7mJYzNA LinkedIn: https://www.linkedin.com/company/american-sleep-apnea-association/ Episode Homepage: http://sleepjunkies.com/sleep-apnea-org/ More Episodes:

Deep Medicine My interivew with Eric Topol about his newest book Deep Medicine and how AI can make healthcare human again. In our conversation, we discuss the current state of the medical industry and the reasons behind its destruction and how technology and AI can restore the medical industry and the doctor-patient relationship. The topic is certainly much more in-depth and complicated than what we discuss but on the surface level, it's informative and insightful. In hope that with the greater understanding we can direct the use of AI and tech in the medical field to benefit human health not impede on it further. I hope you enjoy. Guest Bio Eric Topol is Executive Vice-President of Scripps Research, Professor of Molecular Medicine, and the Founder & Director of the Scripps Research Translational Institute. He has published over 1,100 peer-reviewed articles, with more than 200,000 citations, elected to the National Academy of Medicine, and is one of the top 10 most cited researchers in medicine (Thomson Reuters, ISI). His principal scientific focus has been on individualized medicine. In 2018, Topol was commissioned by the United Kingdom to oversee the future of the National Health Service’s workforce needs with the integration of AI, genomics, and digital medicine technologies. In 2016, Topol was awarded a $207M NIH grant to lead a significant part of the Precision Medicine Initiative, which is enrolling 1 million US participants. Prior to coming to lead Scripps Research Translational Institute in 2007, he led the Cleveland Clinic to become the #1 centre for heart care and was the founder of a new medical school there. He has been voted as the #1 most Influential US physician leader in a national poll conducted by Modern Healthcare. He has published 3 bestseller books on the future of medicine: The Creative Destruction of Medicine, The Patient Will See You Now, and his most recent book, Deep Medicine, which was published on March 12, 2019.

A federal program scheduled to spend $60 million in Wisconsin continues to try to get people to share their health and lifestyle information, plus their DNA. The effort known as All of Us has the ambitious goal of enrolling 1 million people nationally, and 33,000 in the greater Milwaukee area. The promised reward is a $25 enrollment payment and eventually, specialized disease prevention and treatment. WUWM's Beats Me series recently received a couple questions related to the program. Beats Me: What Questions Do You Have For WUWM's Beat Reporters? All of Us is part of the Precision Medicine Initiative , which began during the Obama administration. It's an approach to disease treatment and prevention that looks at people's lifestyle, environment, and biological makeup, including their genetic structure. The thought is that if doctors have a better idea of someone's family health history and gene makeup, the medical community can recommend steps to prevent a disease, find it early, or do

“The Forum on Healthcare Innovation: Technology and the Future of Healthcare Delivery” was hosted by Jackson Laboratories in Farmington, CT on the UCONN Health campus. The conference was full of healthcare professionals and covered genetic testing (including direct-to-consumer), genomics, the microbiome, patient advocacy and healthcare technology. In this episode, I share highlights from some of the presentations including from Francis Collins, the NIH Director. Francis Collins, Director of National Institute for Health, shares that the NIH also stands for hope. Reasons for hope include uncovering life’s foundations, translating discovery into health and moving forward together. Collins gave an overview of the different projects ongoing at NIH, starting with the backstory of the Human Genome Project. A major aspect of the project that has impacted the future of research and healthcare was the data sharing. Every 24 hours, new data collected from the day was uploaded allowing researchers to start using the data in their own research. It would have taken years if the project had waited to release data when it was officially published. This idea of data sharing has increased collaboration between scientist, accelerating the rate of research and development. Collins also shared his excitement around CRISPR, the gene editing technology. From basic research to human trials. This is huge as people often say basic research is not worth the money, but every once in awhile something like this comes along and completely changes the field. CRISPS has already achieved the status of a revolution in medicine and biotechnology. Collins predicts it will cure the first molecular disease, Sickle Cell Disease. The current major NIH project is “All of Us” (formerly Precision Medicine Initiative). Beta launched in May 2017 with a full launch in Spring 2018 where it will ramp up to having over 100 locations. The purpose of the project to accelerate healthcare, specifically for individualized care. Enrolling one million participants is the goal. The term participants is key, as opposed to human subjects, as the patients are considered partners in this journey. Why now? One main reason is the insane drop in the cost of sequencing, in 2004 it costs $22 million to sequence a genome, now in 2017 the cost is $800. “We don’t have a healthcare system, it’s a sickcare system” Collins explained. The more data we can provide showing prevention is more effective than treatment will help us make this transition in our health care approach. Collins also commented on the exciting new field of microbiome research, studying the bacteria that live in and on us. Human Microbiome Project’s mission is to generate resources for comprehensive characterization of the microbiome. It started in 2008 and is now in it’s second phase. George Weinstock, professor at Jackson Laboratories, state there are 754 studies on clincialtrails.gov (as of 10/25/17) that list the microbiome. New genetic sequencing technologies (like Next Generation Sequencing) has driven this field. Research centers around the relationship between disease and the microbiome. The microbiome has additional obstacles when researching, compared to genomics, due to it’s enormous plasticity. Our microbiome changes with our environment, diet etc. One interesting research study mentioned studies Olympic level athletes to find out if there is a “golden microbiome”, so far they have found a bacteria in common with many of these athletes, M. smithii. Another advancement in the field is an FDA approved product produced from microbiome research data, AEObiome’s MotherDirt. It is a body spray that is designed to be compatible with the microbiome of the skin. James Lu, Co-Founder and Senior Vice President of Applied Genomics, Helix, discussed direct to consumer genomics and a few interesting new genetic themed apps (Neanderthal by Insitome, BABYGlimpse by HumanCode). He also talked about emerging platform for participatory research such as Precise.ly, which tracks symptoms and diseases. Lisa Anderson, Co-Founder and Chief Executive Officer of Genome Medical, stressed the potential genetics/genomics medicine has to improve patient outcomes and reduce costs of care, YET it’s not accessible to patients despite the technology existing. Genetic testing is growing 20-25% yearly, however the workforce is only growing by 3%. This gap is continuously growing. Her company aims to reduce this gap by providing real time access to genetic counseling. Anderson also predicts within 5 years every cancer patient will have germline and somatic sequencing. Andrew Ury, Chief Executive Officer and Founder of ActX, explained how direct-to-consumer genetics can be used for a potential screening for drug compatibility (pharmacogenomics). 90% of patients have potential drug genomic interactions. This is especially useful for mental health medications. An announcement/reminder that the first Genetic Counseling Awareness day will be on November 9th. Follow activities with #IAmAGeneticCounselor and on National Society of Genetic Counselor’s website.

What’s it like working for President Trump after working for President Obama? Former White House policy advisor Maya Uppaluru speaks to the energy of both white houses, the initiatives that persist despite the new President, and what it’s like to be a working mom in these roles… Maya Uppaluru was a policy advisor in both the President Obama White House and President Trump White House.  Maya joined the White House in 2015, in the Office of Science and Technology Policy, launching the Precision Medicine Initiative and serving as a policy advisor to the U.S. Chief Technology Officer, where she helped to shape national policies around health data interoperability and led public-private collaborations to facilitate better access to health data for medical research. She is now an associate in Crowell & Moring’s Washington, D.C. office with the Digital Health Practice and Health Care Group and provides strategic, legal, and regulatory advice to a range of organizations at the forefront of health innovation, including providers, plans, large tech companies, startups, and venture capital. Maya has a track record of helping technologists successfully navigate complex regulations to achieve their design and product goals. Most recently, she was on the healthcare team at the United States Digital Service, which aims to improve the way government delivers services to the American people through better technology and user-centered design. Mayaworked directly with engineers, data scientists, designers, and product managers on the launch of the All of Us Research Program at the National Institutes of Health. She also worked with the Centers for Medicare and Medicaid Services to improve data sharing with physicians participating in the Quality Payment Program, and transition Medicare from fee for service to value-based care under the Medicare Access and CHIP Reauthorization Act. Previously, Maya served as a policy advisor at the Office of the National Coordinator for Health IT, where she drafted regulations pertaining to patient access to health data and application programming interfaces and created the first program to link health IT policymakers directly with digital health startups and the venture capital community. Maya also served as an attorney advisor for the Healthcare Connect Fund at the Federal Communications Commission, working to expand access to broadband for rural health care providers to gain access to technology, including telemedicine and electronic health records.

This is the second year in a row, Health Innovation Media put a studio on the ground at HIMSS courtesy of the co-founders at Conversa Health, i.e., Phil Marshall, MD, MBA and West Shell III. We again built an impressive list of guests this year engaging with industry thought leaders, innovators, system executives and the former Acting Administrator for CMS Andy Slavitt. For the compete list checkout:  'LIVE From #HIMSS17: On This Week in Health Innovation'  and for last year's line-up including links to both audio and select video interviews, see: 'LIVE from #HIMSS16: Broadcast Schedule'. In this exchange Health Innovation Media co-host Douglas Goldstein engages Praduman "PJ" Jain, CEO of Vibrent Health a key NIH contractor for thePrecision Medicine Initiative now known as the All of Us Research Program. Produced by Gregg A. Masters, MPH for Health Innovation Media. Enjoy!

Today we are delighted to bring you an interview with Matt Might, computer scientist and medical researcher extraordinaire and architect of President Obama's Precision Medicine Initiative. As the Obama Administration winds down, we're talking with Matt about the goals and accomplishments of precision medicine (and related projects like the Cancer Moonshot) and what he foresees as the future marriage of data and medicine. Many thanks to Matt, our friends over at Partially Derivative (hi, Jonathon!) and the White House for arranging this opportunity to chat. Enjoy!

Camille Nebeker (UCSD Dept. of Family Medicine and Public Health; http://profiles.ucsd.edu/camille.nebeker) joins Andrew Maynard and Heather Ross to talk about the CORE Project (thecore-platform.ucsd.edu) and challenges with wearable device research. Please note that this podcast was recorded using Skype, so the sound is a bit different than usual. We were also treated to bird songs in the background at various points during the recording session, reminding us that despite our focus on technology and tech policy, our work still sits amid living nature. Show Notes •Camille and the Connected and Open Research Ethics (CORE) Project: https://sfis.asu.edu/futurethink/podcast/camille-nebeker-core-project •The CORE Project at UCSD: https://thecore.ucsd.edu/ •Sensecam for Dementia Patients: https://www.technologyreview.com/s/409170/a-camera-to-help-dementia-patients/ •An overview of the IRB: https://researchintegrity.asu.edu/humans •Learn more about the Precision Medicine Initiative: https://www.whitehouse.gov/the-press-office/2015/01/30/fact-sheet-president-obama-s-precision-medicine-initiative

In this special episode of the futurethink podcast, Heather Ross and Andrew Maynard have an unplanned (but recorded) chat with colleagues Michael Bennett, Bob Cook-Deegan, and Diana Bowman. They discuss the possible implications of the 2016 presidential election results on the near future of science, technology, research, and innovation. Show Notes • The Master's of Science and Technology policy program at Arizona State University prepares graduates to work on the intersection of science policy and politics. Check it out here: https://sfis.asu.edu/degree/science-technology-policy-0 • The Disruptive Innovation Festival is an online, open access event for thought leaders and entrepreneurs exploring the changing economy and where we go from here. Find out more here: https://www.thinkdif.co/big-top-tents/arizona-state-university-asu • What does the 2016 Presidential election mean for the future of science and technology policy? • Some areas of scientific research are expected to remain untouched, such as the Precision Medicine Initiative (https://www.nih.gov/precision-medicine-initiative-cohort-program), the cancer moonshot( https://www.cancer.gov/research/key-initiatives/moonshot-cancer-initiative/task-force), Alzheimer’s research (https://www.nia.nih.gov/), the Brain Initiative (https://www.braininitiative.nih.gov/), and CERN (https://home.cern/). • Scientists must now practice what they preach through responsible innovation and use public engagement as a tool to engage people who feel disenfranchised. • Closing notes: We must confront the distrust of expertise. How can experts re-frame the issues? o Propose--don’t preach. o Listen. o Shared value in democracy.

Britt Johnson returns to the podcast to discuss her impressions of Stanford Medicine X 2016, share her thoughts on her featured panel on prescribed opioids, and make her case for including chronic pain treatment in the broader Precision Medicine Initiative. Read Britt's recap of her panel on her blog, thehurtblogger.com and follow Britt on Twitter @HurtBlogger.. Run Time - 33:36 Send your feedback to feedback@justtalkingpodcast.com.

Dr. Steve Steinhubl Director of Digital Medicine, the Scripps Translational Science Institute talks about the NIH Precision Medicine Initiative (PMI) Cohort Program that will be officially launched this fall to recruit 1 million people in the most ambitious medical research program in US history.  The goal is to create a rich data base feed by genetic information and patient data collected using smart phones and sensors to help define the new model for the future of healthcare. @ScrippsSTSI Scripps Translational Science Institute Go here to register to receive more information from NIH: PMI Cohort Program Participation

On July 6th, as part of the President’s Precision Medicine Initiative, the FDA issued two new draft guidances for the oversight of next gen sequencing (NGS) tests. The first guidance is for using NGS testing to diagnose germline diseases. In the second, the FDA lists guidelines for building and using genetic variant databases. To help us understand just what the guidance is and what led to its release, we’re joined by Liz Mansfield, the Deputy Office Director for Personalized Medicine at the FDA.

更多内容请关注微信公众号：每周英语，微信号：Weekly_English。在本周的演讲中，奥巴马缅怀前美国第一夫人南希·里根，简要地回顾了她的一生，并着重强调了她在众多社会事务上的成就，特别是在医疗健康方面。Hello, everybody. This past week, we lost an American icon and one of the most influential figures of her time – former First Lady Nancy Reagan. Born in New York City, and raised mostly in Chicago, Nancy Davis graduated from Smith College in 1943. As an actress, she appeared in 11 films. And off-screen, she starred in a real-life Hollywood romance with the love of her life, Ronald Reagan, whom she married in 1952. As President, I know just how important it is to have a strong life partner, and President Reagan was as lucky as I am. Nancy Reagan redefined the role of First Lady of the United States. In addition to serving as a trusted advisor to her husband, and an elegant hostess for our nation, she was a passionate advocate for issues that touched the lives of so many. She raised awareness about drug and alcohol abuse. She was a staunch（坚定的） supporter of America&`&s veterans（老兵）. And after her own battle with breast cancer and a mastectomy（乳房切除术）, she spoke in personal terms about the need for women to get mammograms（乳房X光摄影检查）. The American people were deeply moved by the love Nancy felt for her husband. And we were inspired by how, in their long goodbye, Nancy became a voice on behalf of millions of families experiencing the depleting（耗尽的）, aching（疼痛的） reality of Alzheimer&`&s disease（阿尔茨海默病，又名老年痴呆症）. She brought her characteristic intelligence and focus to the twin causes of stem cell research and Alzheimer’s research. And when I signed an order to resume federal stem cell research, I was proud that she was one of the first phone calls I made. Nobody understood better than Nancy Reagan the importance of pursuing treatments that hold the potential and the promise to improve and save lives. That’s why, last year, my administration announced the Precision Medicine Initiative（精准医疗计划） to advance our ability to tailor（调整） health care and treat diseases like cancer and Alzheimer’s by accounting for individual differences in people’s genes, environments, and lifestyles. Last month, we took new actions to foster more collaboration between researchers, doctors, patients, data systems, and beyond to accelerate precision medicine. And more than 40 organizations stepped up with new commitments in this cutting-edge（前沿的） field. We’ve also launched the BRAIN initiative to revolutionize our understanding of how the human brain works. Thanks to the tireless efforts of people like Nancy Reagan, I’ve never been more optimistic that we are getting closer to the day when every single patient can get the care they need and deserve. I’ve never been more optimistic that we will one day find a cure for devastating（毁灭性的，令人震惊的） diseases like Alzheimer’s. And I can think of no better way to honor our former First Lady’s legacy than by working together, as one nation, toward that goal. Thanks, everybody.

Topics: a method that might improve the Search for Extraterrestrial Intelligence; Panasonic is developing a robot that can pick tomatoes; the Precision Medicine Initiative will create a research database containing the genome of one million patients; future statistics for Internet Connected & Driverless Cars; legitimate uses for Google's Project Tango indoor mapping tablet; and Wikipedia's article: List of Common Misconceptions. Hosted by Stephen Euin Cobb, this is the March 9, 2016 episode of The Future And You. [Running time: 26 minutes] Stephen Euin Cobb has interviewed over 350 people for his work as an author, futurist, magazine writer, ghostwriter, and award-winning podcaster. A contributing editor for Space and Time Magazine; he has also been a regular contributor for Robot, H+, Grim Couture and Port Iris magazines; and he spent three years as a columnist and contributing editor for Jim Baen's Universe Magazine. For the last ten years he has produced a weekly podcast, The Future And You, which explores (through interviews, panel discussions and commentary) all the ways the future will be different from today. He is an artist, essayist, game designer, transhumanist, and is on the Advisory Board of The Lifeboat Foundation. Stephen is the author of an ebook about the future entitled: Indistinguishable from Magic: Predictions of Revolutionary Future Science.

How related is breast cancer to say, prostate cancer? Researcher John Witte of the University of California San Francisco is looking at the shared genetic basis among different cancers with the hope that it will lead to more targeted treatment. This project ties in with President Obama’s Precision Medicine Initiative by personalizing treatment based on genetics. "All of cancer is a genetic disease. And I don’t mean that it’s all inherited, but even cancers that are caused by say, smoking or sun exposure, arise because there’s been DNA damage." Witte and his lab are looking for the genetic mutations that different types of tumors share, no matter where in the body they’re located. "For example, are hormonally based tumors, like breast, ovarian, and prostate cancer, are those arising from similar genetic mutations? And if so, maybe we could use similar treatments across different cancers."

On this week's podcast, the team discusses the confirmation of Robert Califf as FDA commissioner and his priorities, the president's Precision Medicine Initiative at the White House, the long-awaited release of the new global quality standard for medical devices, unannounced audits in Europe, device firms at the Supreme Court, an interesting deal for ResMed and more.

Original Air Date: January 15, 2016 | Throughout medical history, countless diseases have been diagnosed, treated, and prevented over time. Unfortunately, far too many diseases have no known means for effectively treating them, much less preventing them from occurring in the first place. What we do know is that the need is great for finding a better understanding of what influences our genetics, as well as our environmental and lifestyle choices, have on diseases. But how? One solution being explored is Precision Medicine.

Informatics is changing the processes behind laboratory medicine. With ever-growing demands on laboratory medicine professionals not only to collect and interpret omics data in the era of the Precision Medicine Initiative, but also to ensure high-quality, low-cost patient management in the structure of accountable care organizations, we have invited several experts to discuss their take on "big data."

Josie Briggs is Director of the National Center for Complementary and Integrative Health (NCCIH) at the NIH. She is also currently serving as interim director of the president’s new Precision Medicine Initiative (PMI). What has happened since the president announced the initiative, what is the proposed timeline going forward, and how much money will there be for the project ongoing?

A review of a Precision Medicine Initiative presentation at Jackson Laboratory Genomic Medicine in Farmington, CT. by Dr. Jo Handelsman. Also on July 10th the 21st Century Cures Act passed in the House of Representatives, the advantages and disadvantages are explored if this is passed in the Senate.

Francis Collins is Director of the National Institutes of Health. Stephen Morrissey, the interviewer, is the Managing Editor of the Journal. F.S. Collins and H. Varmus. A New Initiative on Precision Medicine. N Engl J Med 2015;372:793-5.

One of those attending the recent White House gathering where Obama announced the Precision Medicine Initiative was a woman who has worked tirelessly as a patient advocate for over twenty years. She’s an award winning scientist and the CEO of the Genetic Alliance: Sharon Terry joins us to kick off a new series, Personalized Medicine and the Consumerization of Healthcare.

This episode features an interview with Noel Lloyd who is the communications manager from the Alliance for Aging Research. The Alliance for Aging Research is the leading nonprofit organization dedicated to accelerating the pace of scientific discoveries and their application to vastly improve the universal human experience of aging and health. Noel explains how the Alliance advances science and enhances lives through education campaigns and working with legislation. You can read the blog post Noel references about Obama's Precision Medicine Initiative that I discussed last episode of DNA Today along with the 21st Century Cures Initiative blog post. Check out the nonprofit on their website, agingresearch.org, and follow their activties on Twitter @aging_research.

President Obama unveiled the details of his $215 million precision medicine initiative, the centerpiece of which is a 1 million person study that seeks to correlate genetic data, with health records, lifestyle information, and more to better understanding wellness and disease and fuel the development of new therapies. We spoke to Amy Miller, executive vice president of The Personalized Medicine Coalition, about the initiative, if the funding for it will match its ambition, and whether concerns about privacy will stand as a barrier to its success.

President Barack Obama proposed the Precision Medicine Initiative. It has a $215 million investment in the President’s 2016 Budget. This initiative focuses on the making major advances in personalized medicine. This means tailoring the treatments based on specific characteristics of individuals, such as a person’s genetic makeup, or the genetic profile of an individual’s tumor.