Podcasts about opennotes

- Overview of Metastatic Triple Negative Breast Cancer - The Important Role of the Caregiver in Communicating with the Health Care Team - Your Important Role in Decision Making - Taking on the Role of Caregiving - What Research Tells Us About Caregivers - Caregiving for Your Loved One with Metastatic Triple Negative Breast Cancer - Challenges in Communicating with the Health Care Team - Guidelines to Prepare for Telehealth/Telemedicine Appointments, Including Prepared List of Questions, Quality-of-Life Concerns, Discussion of OpenNotes & Follow-Up Appointments - Coping with Each Day, On Special Occasions, Holidays & Birthdays - Managing Family & Friends - Long Distance Caregiving - Self-Care & Stress Management Recommendations to Manage the Stress of Caregiving - Questions for Our Panel of Experts

- Overview of Metastatic Triple Negative Breast Cancer - The Important Role of the Caregiver in Communicating with the Health Care Team - Your Important Role in Decision Making - Taking on the Role of Caregiving - What Research Tells Us About Caregivers - Caregiving for Your Loved One with Metastatic Triple Negative Breast Cancer - Challenges in Communicating with the Health Care Team - Guidelines to Prepare for Telehealth/Telemedicine Appointments, Including Prepared List of Questions, Quality-of-Life Concerns, Discussion of OpenNotes & Follow-Up Appointments - Coping with Each Day, On Special Occasions, Holidays & Birthdays - Managing Family & Friends - Long Distance Caregiving - Self-Care & Stress Management Recommendations to Manage the Stress of Caregiving - Questions for Our Panel of Experts

- Overview of Metastatic Triple Negative Breast Cancer - The Important Role of the Caregiver in Communicating with the Health Care Team - Your Important Role in Decision Making - Taking on the Role of Caregiving - What Research Tells Us About Caregivers - Caregiving for Your Loved One with Metastatic Triple Negative Breast Cancer - Challenges in Communicating with the Health Care Team - Guidelines to Prepare for Telehealth/Telemedicine Appointments, Including Prepared List of Questions, Quality-of-Life Concerns, Discussion of OpenNotes & Follow-Up Appointments - Coping with Each Day, On Special Occasions, Holidays & Birthdays - Managing Family & Friends - Long Distance Caregiving - Self-Care & Stress Management Recommendations to Manage the Stress of Caregiving - Questions for Our Panel of Experts

Host Dr. Davide Soldato and guests Dr. Suzanne George and Liz Salmi discuss their JCO article "Overcoming Systemic Barriers to Make Patient-Partnered Research a Reality" TRANSCRIPT TO COME Dr. Davide Soldato: Hello and welcome to JCO's After Hours, the podcast where we sit down with authors from some of the latest articles published in the Journal of Clinical Oncology. I am your host, Dr. Davide Soldato, Medical Oncologist at Ospedale San Martino in Genoa, Italy. Today, we are joined by JCO authors Liz Salmi, Researcher and Patient Advocate, and by Dr. Suzanne George, who works as a Medical Oncologist at the Dana-Farber Cancer Institute where she acts as the Chief of the Division of Sarcoma. She is also Associate Professor of Medicine at Harvard Medical School. Today, we are going to discuss with Suzanne and with Liz the article titled, “Overcoming Systemic Barriers to Make Patient-Partnered Research a Reality.” So thank you for speaking with us, Suzanne, Liz. Liz Salmi: Thanks for having us. Dr. Suzanne George: Yes, thanks. Dr. Davide Soldato: I just want to make a brief introduction because I think that the concept of patient partner research is very wide and I'm not sure that all of the readers of JCO really have a deep understanding because I imagine that there are a lot of ways we can involve patient and patient advocates in the research process. And so I was wondering if you could give us a little bit of an introduction about the concept. Dr. Suzanne George: Sure. I think the point that you raise is really important because there are many terms that are used, patient-partnered research, patient advocacy, but I don't think that there's a single definition as to what that actually means. In the context of our work, we've sort of summarized our experience through something called the PE-CGS or the Participant Engagement and Cancer Genome Sequencing network. And in that project, which is a Moonshot funded network, the intention is to have participants in research be true partners working with traditional academic research teams in order to develop networks specifically focused on cancer genomics. So what we've done, every center is a little bit different in the network, but we're really having research participants not just act, but really work on the research team from the beginning of the project inception all the way through the research project. Liz Salmi: What brings me to the PE-CGS network is my 17 years experience as a person living with a low grade glioma, brain tumor or brain cancer and involving patients in the co-design of research is super critical because patients bring unique lived experiences that can shape research questions, study designs and outcome measures in ways researchers might not anticipate. And we're finding this through our network. So through my work, including my patient experience and brain tumor focused study designs, I've seen firsthand that patient insights can drive more practical implementations that ultimately benefit both patients and the researchers. And so the particular project I work on in the network, we've got like five different arms and different groups of cancer types that are being represented, so I'm basically focusing on the OPTIMUM study around how brain tumor patients can help in this study design. So in this project I serve as not just a participant in the research, but also as a patient co-investigator. Dr. Davide Soldato: That is very interesting. And I think that we really captured the essence of patient-partnered research by having both of you here talking with us about the PE-CGS. And the second question that I wanted to ask is: I really think that the network focuses on something that is quite important right now and currently in medical oncology - so cancer genome sequencing, access to novel therapies - and I think that it's really challenging to imagine a way in which we can really get our patient and get patient advocates to help us designing new trials who are looking into this. And I just wanted to know, do you think that there is something that is particularly challenging when we are speaking specifically about cancer genomics and access to this type of drugs that are targeting specific molecular alteration? Because I think that in general it might be a little bit easier, maybe I'm biased on this, so you can also tell me if I'm wrong, but I think that it's a little bit easier when we are trying to design, for example, behavioral intervention or things that are more commonly found in oncology and a little bit more complicated when we are speaking about genomics. Dr. Suzanne George: So I think that's part of what this network is trying to address, which is really what are the barriers and the opportunities around cancer genomics from the patient perspective and how do we make sure that that perspective is included as we're thinking about study design and inclusion? As Liz mentioned, this network has five different networks within the network, five different centers, and each center is slightly different with the population that it engages with. And so there's diversity there in terms of reaching out to different patient communities and partner communities around potential barriers for genomics research. I think one of the things though that we're finding across the network is that people want to be part of this work. People that have a lived experience of cancer want to help move the field forward. And what we ended up writing about was some of the barriers that get in the way of that. It's awesome to have people like Liz that are like all in and then there's people who are on the other end of the spectrum that want to share their information to help move the field forward around genomics, but then there's all these barriers at the systems level that get in the way of that. So I think that that's one of the challenges we're trying to overcome and learn about across the network. Liz Salmi: Yeah, I think I bring this really interesting, I can't say I'm really interesting, but I think I bring this really niche perspective. Not only am I a person living with a brain tumor and I'm a co-investigator but also like a participant in this study. I also, in my day job, I'm an investigator as part of the director of communications and patient initiatives on the OpenNotes lab at Beth Israel Deaconess Medical Center. And our lab really focuses on how open, transparent communication between doctors and patients improves care. And that's been going on for longer than I've been around on our team. But what I bring to that lab is I focus on engaging both patients and clinicians in spreading the awareness about the power of how easy access and transparent communication, access to information across healthcare settings helps patients feel more involved and informed in their care.   And I work specifically, it's a really niche area. I work on projects that aim to expand access to notes and test results in diverse care settings, really helping tailoring initiatives so that various patient communities can understand how they can be involved in these types of research projects. Ultimately that's what brought me into this space. I might be one of the first generation of patients that actually starts helping co-design studies on things like this. And I think that across a lot of healthcare settings cancer is really what we're focused on. But patients are now increasingly being involved as research collaborators. And there's many different funding institutions such as the NCI but also PCORI they now mandate that funders reflect a shift towards more patient centered research frameworks. So it's like the PE-CGS network isn't the only group that's being funded to do research in this way. And I think other investigators, even outside of the cancer space, but specifically in cancer, need to learn how to do research in this way. Dr. Suzanne George: Yeah, I agree. And I think the other thing that we need to do is if people want to participate and that participation in many of these networks has to do with record sharing and data sharing, the system needs to accommodate that. If people want to share their information in order to allow research to be performed, then we need to make sure that that can happen, and that it's not that the institution systems don't connect with someone else's systems or that you to pay X, Y and Z dollars for the data to go A, B and C, or that some places are on this EHR and some places are on that EHR and so, sure, you can share it, but you have to go through all of these hurdles in order to make it happen. When a patient signs a consent form that says, “I want my data to be used,” we as an investigator community, we owe it to that patient to make sure that their information is being part of the data set that will be used for learnings. And that's part of what we wrote about, is the lots of behind the scenes things that just get in the way and that we need to work towards improving. Liz Salmi: Both Suzanne and I are really passionate about this stuff. And as a person living with a brain tumor for the last 17 years, I'm a chronic research participant. I always, always, am really curious. I'm like, “Yes, let me contribute my data. Whether that's electronic health record data or maybe I'm being interviewed about certain aspects of the cancer care experience.” And the one thing that bummed me out for like the first 10 years of being this chronic research participant is I would enroll in things, I'd be interviewed for things, I'd fill out these surveys and then I never heard anything about what happened with that information and that time I spent. And people would send me like a $10 gift card to Amazon, like, “Thanks for participating,” but really what I wanted to know is like, did you do anything with that? How did that inform things? So that really annoyed me to the point where I was like, I'm just going to be part of the research process and really figure out how we share that information back to everybody who had spent so much time. And so my participation in this space is like, “Let's change it. Let's give people information back.” And now I know it takes a really long time to have a finding that could be published somewhere that we then get it back. But closing the loop on the communications gap is something I'm really passionate about. Dr. Davide Soldato: Do you think that we are changing a little bit this perspective? I feel like we are getting a little bit better in creating patient communities of patients who are included in specific clinical trials. And then we do the effort of creating a community, of keeping people really involved with the research that they are participating in. I think that we are not quite there yet, but I think that we are making some kind of steps in that direction. For example, trying also to inform patients to participate in the study when the publication that is related to that specific study comes out. What is the benefit? What have we discovered? I think that we are not quite there yet. There is a lot of room for improvement, particularly in the way I think we communicate these to patients who participated in research. But I have the impression that we are making some steps forward. So I don't know. Do you share the same thoughts? Liz Salmi: So Dr. George talked about the PE-CGS network and then there's five different cancer types being studied. So the thing I can reflect on is what we've done in the, this is a really long acronym but, Optimizing Molecular Characterization of Low Grade Glioma. Say that 10 times fast. So our particular group is people who donate tissues about their brain tumors. We're really collecting data from people with multiple brain surgeries over time, which is really complicated and to make that process easier. And then once those tissue samples are stored somewhere, studying that information about what changes in the brain tumors over time and then also giving those results back to people so they can take that research level data and bring it back to their neuro oncology team and say, “Hey. Here's what I found out, “and having a conversation. So, this is a long multi touch point study and in order to do that, to even make that possible is the individual patients need to understand what's in it for them. They're donating precious tissue in order to make the research process work. And so in order to do that, it's not just the investigators saying, “Hey. Give us your brain tissue, peace out.” It is we have a whole research advisory council of people living with these particular tumor types who help us co-design how do we do that outreach, how do we explain why this is important, or how do we message the importance of this work so they understand,“Oh, this is what's in it for me and this is what's in it for other people like me.” And from there then with that process, which again I mentioned, all of these multi-step processes, once we're able to understand how patients want to hear that information, what's in it for them, then we bring it back to like those bench scientists, investigators going, “Okay. And here's how this workflow should work for the patients,” and design everything around the patient experience before we even care about what's happening from the scientist researcher perspective. Dr. Suzanne George: I agree. I think to your point, I think the fact that we're all here today talking about this is just like you said, is that we are making progress, right? Like we're even here having this conversation. Just like you said, I think there's opportunities to improve and further refine the communication and the involvement back in the patient community. When I think- if I put on my clinical investigator hat, I'm very involved in PE-CGS, but my primary research interest historically has been clinical trials and drug development. And I think that our approach in communicating results back has just not been consistent. But I do think that there's opportunities, just like you said, to provide summaries of information to loop back. I don't think that we've completely solved: What do we do? How do we provide information back to loved ones of patients that may no longer be alive that participated? How do we provide information to people who maybe we don't have their contact information? What if we lose track of them? How do we also make sure that we give people the choice to know? Do you want to know about this or would you rather just participate and then give space to that research? Because maybe that's how people's best for them. So I think that you're right, we're making progress, but I think that there's also a lot more that we can do. So I'm glad we're talking about it. Dr. Davide Soldato: How much do you think that directly involving patients in this process, like asking them directly and co-designing the trial from the very beginning and understanding the level of information? This might also be another question inside of the question. So first, how much co-designing this type of research helps, and then do we also need to further refine at that level of communication, different communication depending on the level of information that different people want to have? Because I think that that's another level of complexity that we need to work towards at a certain point. We need to work on that first level of giving back the information. But then I think that there is also the other point of providing the information and information that should also be probably adapted to the cultural belief of different patients, to the ethnicity or to whatever cultural background or social background or whatever they may place their most interest in. Dr. Suzanne George: So I think that you're 100% right on all of those points. I think those are all topics that need to be considered. We may be able to get to a certain degree of granularity around those communication points, but on the other hand, we also want to be able to communicate broadly and accessibly as possible. One of the interesting things about PE-CGS, as Liz was mentioning, is each of the five centers has a slightly different focus. For example, one of the centers is focused on American Indians and Tribal Nations, and the communication practices coming out of that center are really unique and really very special and something that's been really, I think for me, very fascinating to hear about. Because to your point, like, just the strategy and what's considered appropriate is just different. I think if we hope to build a research world where our research participants and research data come from a broad swath of the population that really represents the population, the only way that we're going to be able to do that is find ways that bring meaning across the population as well. And that may be different based on where people are coming from and where people are at in their own journeys and in their own lives. But it's on us to be open to that and like to hear that, so we can do the right thing. Dr. Davide Soldato: And I think that this is one of the objectives of the PE-CGS, really trying to bring this type of research participation to really diverse and underrepresented populations, not only in terms of cultural background, but I also think about different types of tumors. Like Liz was referring about brain cancer or low grade glioma, which is a very niche population. And I also think about sarcomas, for example, the degree of variability that we have in that specific type of disease is such that we really need to probably find different ways to communicate also inside of this diversity in terms of single patient and experiences, but also in terms of single diseases. You were speaking a little bit before about the fact that the manuscript is really on the barriers that we would need to identify and then to change to make this system a reality. We were talking a little bit about consenting information and consenting the sharing of information, and I think that you make a very interesting point about the consent process when we are designing research. Could you give a little bit of your impressions about giving informed consent? What we need to change, how can we improve? Dr. Suzanne George: The bottom line is the consent process needs to be simple, clear, and transparent. And sometimes I feel, because the traditional way that we've always gone about consent is frequently consent is as it should be in many ways. These consent forms are developed from a regulatory framework. What are we required to do to consent and how do we meet those requirements? Sometimes that becomes directly at odds with how do we do this simply, clearly and transparently? And I think as a research community, we have to be able to find a common ground there. That has to include regulatory requirements, that has to include IRBs. When we think about consents and work with our patient communities on this, everybody agrees the consents need to be more simple, except the IRB or maybe the IRB agrees, but it's this tension between how do we make it simple, clear and transparent and not get so bogged down in the regulatory that we lose that intent. Liz Salmi: It's complicated. As a person, I mentioned, I'm a chronic research participant living with a brain tumor for 17 years. I remember enrolling in studies and seeing things that are just so complicated. I'm like, “Well, I'm just going to sign off.” I imagine somewhere somebody who knew more than me said, “I should just fill out this thing.” And then as I switched to the research world, I spent more time digging into, “Wow, this is a really complicated consent,” versus, “This is a really streamlined consent and I love this.” And throughout my work with Dr. George and others on the PE-CGS network, an example of a good consent that's easy for people to understand is what the NIH All Of Us research project did, where they're trying to get a million people, more than that, signed up to be in this longitudinal study. And their consent is to go to their website and they have a whole bunch of short YouTube videos. There's a kind of like a quiz involved and they're animated, they have multiple languages involved. And I signed up for that study and I was like, “This is a beautiful consent.” And it's a very plain language. And more consents like that. If you're looking for a good example, go there. I have not been paid by them in any way. I'm a participant in their study. I'm not sure if you guys and your listeners are aware, but there was I think, October 19th of this year or 2024, there was a special communication published in JAMA on an update on the Helsinki Principles for Medical Research involving human participants. And what they're saying is an ethical update is patient engagement in research, which emphasizes the need for continuous, meaningful engagement with research participants and their communities throughout the research life cycle, before, during and after studies. And so this is what we're talking about here. And it's now been embedded in these updated principles. Dr. Suzanne George: That's really great and I agree with you. I think the All Of Us consent process is very accessible. It feels like you can understand it. But the other thing is that, again, I also am not directly involved with All Of Us, but the other thing about it is that they also have a high-touch way to consent where they have navigators and people that will go into communities in a very resource intensive way. So there's all different ways to go about it. We need to find a way that we can balance the complexity around regulatory and the simplicity and transparency that we need in cancer research. Dr. Davide Soldato: Do you think that in terms of patient engagement we are doing better in academic sponsored research compared to sponsored research? A little bit of a provocative question maybe. Dr. Suzanne George: I think that's a really interesting question. I think this idea of participant engagement and involvement is being infused across the research community. And in part, the FDA has prioritized it as well. I think the industry sees the FDA prioritizing this as well. And I think that there are many companies that are involving participant and advocacy communities in different ways in the study design, in the study process early on. So I think it's happening. Liz Salmi: I'll be spicy. I've been a participant, I've been an investigator, co-investigator on studies and I have been reached out to often by pharma of, “Hey Liz, brain tumor patient advocate, would you be kind of like the poster child of our study or be involved in that way?” And I personally want to have no work in that space. I have no interest. However, I am approached, and other people living with cancer have been approached, by industry about lending their likeness or being commercials. And I don't think there's enough education to patient advocates of what that necessarily means, pros and cons. But I also can't speak on behalf of all of the patient advocates who might want to see that's a way that they could lend their voice and advance research. I personally think that there needs to be more involvement from the academic side of creating spaces where patients can be involved in the co-design of research and they also get compensated for their time fairly at the same level or some version of it in a way so they don't just jump to the pharma side of things. But that's an opinion that I have. Opinions. Dr. Suzanne George: I think it's really interesting the point that you make about providing more awareness or information about what it even means to do these things from a patient side. I certainly don't know that side as well, but I do see, often, the term patient advocate used very frequently in many different contexts that mean many different things. And I think that there's an opportunity there for understanding more about what that really means and what it can mean. Liz Salmi: Yeah. We want to involve patients, we want to do patient engagement. The BMJ or the British Medical Journal, have this new policy in place for patients as reviewers of research. And what I find interesting with the BMJ is they also ask patients to declare their conflicts of interest. So this is kind of a new space. If you're involved in patient research or perhaps working with pharma, patients, if you're involved at that level, should also be declaring their conflicts of interest if they're getting paid by a pharma. Or do I have a conflict now that I'm doing this cool ASCO podcast? Maybe. But do we want to overburden patients with tracking all this information? So it's a new world. The more we have access to information, the more we share information, the more we can read studies and we co-design, there's a new space I think over the next 5 to 10 years where how do we define this in a transparent way. Dr. Suzanne George: Yeah, I think you're right. I know that we're getting long, but I just want to say one other thing about that, which is that you're right. If we're bringing patients in to be partners, then we have to treat each other that way. We have to acknowledge- I think this issue that you raise about compensation and about paying people for their time or acknowledging people for their time, I think that's really important and very under-discussed. Liz and I were at the annual meeting for the PE-CGS and someone was there giving a talk about- this was a guest speaker that was giving a talk about a very large high impact grant and that included a patient advocacy kind of module, let's say. And they put in a specific funding and budget for that component that included compensation for the people- from the people in the advocacy community that were spending their time. And the PI of this project, again, not to get into the details of it, but they were sharing that they got a fair bit of pushback on that. But the PI pushed back and said, “Listen, we're compensating other people for their time. These guys, we want them to be partners, we need to treat them as such.” And I think that also again, kind of we're in a new space, but if we're going to do it right, then we have to acknowledge that we're partners. Dr. Davide Soldato: But I think that maybe an experience like the PE-CGS probably can be also a network for expanding awareness for patient advocates and also for creating sort of a new culture about what does that mean and how can we also improve on that part. Because in the end, if we want to engage, we also need to provide patients with the instruments to engage in a way that we think it's both useful for them, that can make research better, but can also make them at the exact same level as everyone who is participating in that research, which I think it's the bottom line of all the concepts that we are discussing right now. Liz Salmi: Yep. Dr. Suzanne George: Yes, I agree. Dr. Davide Soldato: So I think we have covered a lot of things. Just wanted to make one last reference to a point that Suzanne mentioned earlier, which is the interoperability of systems. And I think that when we come to the cancer genome, that is very important, being able to share information, especially for those diverse and less common cancer types that we were discussing earlier. There is a lot of work in gaining all that information and we need to be able to gather all of that information in the same place to advance research. You were mentioning before that the process is actually very complicated and I was wondering if in the network you are already working on some potential ways to address this type of issue. Dr. Suzanne George: I think our first step is really just calling it out, acknowledging how hard this is and what the barriers are. Oftentimes I think in research, we don't talk enough about what our methodologic barriers are. We talk more about what our results are, but not like how hard it is. But like in our projects, the Count Me In project, my network that I'm involved with, we're doing rare tumors. We can only do the United States and Canada because of privacy issues. And we're doing a completely web based platform. So we have the technology. But the privacy laws are impeding our ability to involve other parts of the world. And even within the United States, it's not as easy as we would like to get records. For example, despite the fact that people are saying, “Yes, use my records.” But then it's like, “Okay. Well, that's not that easy. How are we going to get them?” We had to hire a third party vendor in order to get the records, in order to manage all the different consents and releases that were needed across all these different hospital systems. So I think the first question is just calling it out and then from there working together as a community to try to see what the solutions can be, because we need to come up with those solutions. Liz Salmi: Yeah, we're in the same camp as Dr. George and the fact that of the five partners, we're not associated with one particular institution. So we can reach out around the country and get access to those records. And we need them at multiple points in time, over time and it takes a lot of effort and work. And it's not like you could just, say, call hospital A and they have all the information. It's like all of the calls to all of the other sites. And it's not just from one surgery, it's from two or more surgeries. But also the way that people stay involved, and, by people, I mean patients and family members, there's this promise that at some point you're going to get some sort of information in response. Like, it's the “what's in it for me?” aspect of it. We do interviews with those who've been enrolled in the study, those who could be potential enrollees in the future because they've only had one surgery. And what we're learning overall is there's this altruistic nature that people have of- they want to participate in the research because they're like, “Here's my horrible cancer experience. I know other people are going to go through this as well.” There's this guiding light of “I want to do something, and I'm not going to be the person that creates the cure, discovers the genome or whatever for this particular cancer type. But my little bit of participation in this multiplied by 20, 30, 100, 1000 people, is what is going to lead us to the next phase in development and is going to move the needle for this particular tumor type or other cancer types.” And so what I think the impact in this space and participant engagement isn't just something we figure out, like a little research method and a little finding for one small tumor type, it's like the methods to do that is the big impact. The method around participant engagement can impact even beyond the cancer community. Dr. Davide Soldato: Yeah. As Suzanne was saying, we need to be in a system that really helps us and allows us to do that. So I think that you really have a lot of things to work on inside of the network. Dr. Suzanne George: I think one thing that I would say is I think that this issue of interoperability is acknowledged as a challenge. We refer to several different initiatives across the US where this is supposed to ideally change over time. I think people want it to change over time. I think investigators at the ERTC want it to change over time. I think different countries are working on this. And I think, again, the first step is getting us at the table talking about it, and then figuring out ways to move it forward. And I think it's there. I think that there is the will. We just have to figure out the how and continue to work on that together, because there's just a tremendous opportunity. I live in the rare tumor space, and between the FDA and the EMA and the regulatory, the national and the international research groups, the patient communities, people want this to be solved and I do hope that we will be able to get there. Dr. Davide Soldato: So I would like to thank Liz and Suzanne for joining us today. Dr. Suzanne George: Thanks for having us. Liz Salmi: Thank you. Dr. Davide Soldato: Suzanne, Liz, we appreciate you sharing more on your JCO article titled, “Overcoming Systemic Barriers to Make Patient-Partnered Research a Reality.” If you enjoy our show, please leave us a rating and a review and be sure to come back for another episode. You can find all ASCO shows at asco.org/podcasts.   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.     DISCLOSURES Liz Salmi Speaking Honoria: Medscape. Research Funding (Inst): Abridge AI, Inc., Yosemite. Dr. Suzanne George Honoraria CStone Pharmaceuticals Consulting or Advisory Role Blueprint Medicines, deciphera, Bayer,  Lilly, UpToDate, Research to Practice, MORE Health, Daiichi, Kayothera, Immunicum, BioAtla   Research Funding Blueprint Medicines, Deciphera, Daiichi Sankyo RD Novare, Merck, Eisai, SpringWorks Therapeutics, TRACON Pharma, Theseus Pharmaceuticals, BioAtla, IDRx, NewBay Pharma, Acrivon Therapeutics   Patents, Royalties, Other Intellectual Property Company name: UptoDate Stock and Other Ownership Interests Abbott Laboratories and Pfizer Recipient: An Immediate Family Member

- Overview of Metastatic Triple Negative Breast Cancer - The Important Role of the Caregiver in Communicating with the Health Care Team - Your Important Role in Decision Making - Taking on the Role of Caregiving - What Research Tells Us about Caregivers - Caregiving for Your Loved One with Metastatic Triple Negative Breast Cancer - Challenges in Communicating with the Health Care Team - Guidelines to Prepare for Telehealth/Telemedicine Appointment about Prepared List of Questions, Quality-of-Life Concerns, Discussion of OpenNotes & Follow-Up Appointments - Coping with Each Day, On Special Occasions, Holidays & Birthdays - Managing Family and Friends - Long Distance Caregiving - Self-Care & Stress Management Recommendations to Manage the Stress of Caregiving - Questions for Our Panel of Experts

- Overview of Metastatic Triple Negative Breast Cancer - The Important Role of the Caregiver in Communicating with the Health Care Team - Your Important Role in Decision Making - Taking on the Role of Caregiving - What Research Tells Us about Caregivers - Caregiving for Your Loved One with Metastatic Triple Negative Breast Cancer - Challenges in Communicating with the Health Care Team - Guidelines to Prepare for Telehealth/Telemedicine Appointment about Prepared List of Questions, Quality-of-Life Concerns, Discussion of OpenNotes & Follow-Up Appointments - Coping with Each Day, On Special Occasions, Holidays & Birthdays - Managing Family and Friends - Long Distance Caregiving - Self-Care & Stress Management Recommendations to Manage the Stress of Caregiving - Questions for Our Panel of Experts

- Overview of Metastatic Triple Negative Breast Cancer - The Important Role of the Caregiver in Communicating with the Health Care Team - Your Important Role in Decision Making - Taking on the Role of Caregiving - What Research Tells Us about Caregivers - Caregiving for Your Loved One with Metastatic Triple Negative Breast Cancer - Challenges in Communicating with the Health Care Team - Guidelines to Prepare for Telehealth/Telemedicine Appointment about Prepared List of Questions, Quality-of-Life Concerns, Discussion of OpenNotes & Follow-Up Appointments - Coping with Each Day, On Special Occasions, Holidays & Birthdays - Managing Family and Friends - Long Distance Caregiving - Self-Care & Stress Management Recommendations to Manage the Stress of Caregiving - Questions for Our Panel of Experts

The PulsePod team are in Brisbane Australia for the annual HIC conference, where there are a number of announcements from large software companies, plus the future of interoperability seems to be FHIR all the way baby!What does Rock Health's latest report tell us about US investor sentiment in digital health startups?Investing in women founders is so rare, should we refer to that as the real unicorn in start-up land?US based personal genomics company 23andMe – from highs to lows, what's next for personal genomics?It's all about the patient!  Simple things like the convenience of online patient appointment booking are still a rarity in the land of medical specialists – one guy is wanting to change that!A visit into the Pulse+IT archives: Kate McDonald wrote about Chris Longhurst and Mike South's HIC2018 keynote on why clinician burnout related to the EMR is not as prevalent a problem in Australia vs US.Louise & George talk with Liz Salmi, Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in the US about her research and patient advocacy work, and what does happen when patients get bad health news from reading it in online firstPaper: When Bad News Comes Through the PortalKeynote: Getting Ready for Open Everything, MedInfo 2023Follow @TheLizArmy on LinkedIn  |  X Visit Pulse+IT.news to learn more, engage in this rapidly growing sector, and subscribe to breaking digital news, weekly newsletters and a rich treasure trove of archival material.  People in the know, get their news from Pulse+IT – Your leading voice in digital health news.Follow us on LinkedIn  Louise  |  George  |  Pulse+ITFollow us on X   Louise  |  George  |  Pulse+ITSend us your questions pulsepod@pulseit.newsProduction by Octopod Productions | Ivan Juric

The OpenNotes Lab will bring transparency, collaboration, and innovation to the intersection of healthcare AI and patient-centered care. The Lab builds on the organization's 15 years of advocacy and research. The Lab will apply OpenNote's expertise in research, advocacy, and innovation to an emerging area of healthcare – AI - to ensure it enhances patient care and is not a burden on clinicians. Healthcare IT Today had the opportunity to sit down with Liz Salmi, Communications & Patient Initiatives Director at OpenNotes and Chethan Sarabu, MD, FAMIA, FAAP - Clinical Assistant Professor at Stanford University School of Medicine to learn more about OpenNotes and OpenNotes Lab. Learn more about OpenNotes at https://www.opennotes.org/ Find more great health IT content at https://www.healthcareittoday.com/

In this episode, our guest is Colin Banas, MD, MSHA, Chief Medical Officer, DrFirst. Colin Banas is an Internal Medicine Hospitalist and the former Chief Medical Information Officer for VCU Health System in Richmond, VA prior to stepping down after 15 fulfilling years to pursue consulting. He is proud to have testified before the U.S. Senate and the Office of the National Coordinator (ONC) on the topic of Health IT and the Meaningful Use Program and is a former Health IT Fellow for the ONC. His interests center the role of big-data and analytics on patient outcomes and on novel forms of Clinical Decision Support, those that are outside of the realm of traditional rules and alerts, and include real-time dashboarding and intuitive usability designs. He also helped spearhead the VCU effort to participate in the Open Notes initiative, where patients have access to their clinical documentation in real time. In 2017 Dr. Banas was humbled to receive the HIMSS-AMDIS award for Physician Executive of the Year from his peers. Pharmacy Interoperability: New Opportunities, Persistent ChallengesTopic Summary: Interoperability has been a buzzword for the healthcare industry for many years, but until now, the conversation has centered around how to get doctors and healthcare systems more accurate, complete patient health data for improved outcomes. In 30 years of e-prescribing, the pharmacy's role – at least where interoperable data sharing is concerned - has been viewed from the narrow lens of fulfillment. Today, there are encouraging signs of change, particularly coming out of the ONC's annual meeting in December 2023. Pharmacy Interoperability: Persistent Challenges….-Technical, economic, structural, and psychological issues that must be addressed-Conflicting concerns/interests of the major players within the industry, including NACDS/NCPA, AMA, HHS, and others-Data standards/lack of available infrastructure and networks to advance and scale interoperability with pharmacists and pharmacies-Competition can impede pharmacy collaboration in data sharing ….New Opportunities-Awareness is growing, more attention and focus from ONC, CMS, and others of the unique technical, economic, and business challenges pharmacies face – and acknowledgment of the critical role pharmacists play as equal members of the patient care team-AI in pharmacy workflow and patient-facing tech solutions are connecting the provider, patient, and pharmacy like never before  -Pharmacy vendors are looking for new and innovative ways to partner within innovative data-sharing business modelsGuest - Dr. Colin BanasHost - Hillary Blackburn, PharmD, MBAwww.hillaryblackburn.com  https://www.linkedin.com/in/hillary-blackburn-67a92421/ @talktoyourpharmacist for Instagram and Facebook@HillBlackburn Twitter/X ★ Support this podcast on Patreon ★

In 2021, federal rules from the 21st Century Cures Act mandated that most clinical notes be made available in real-time, online and free of charge to patients. This practice, commonly known as “open notes,” was a significant step towards enhancing medical information transparency–– a vital step in reinforcing trust in the provider-patient relationship. However, it also introduced complexities, raising questions as to what to include in the notes. “The ethical analysis does not always align with the legal analysis, and these are conversations that ethicists are aware of,” Steven Bondi, MD, JD, says. Dr. Bondi, a lawyer turned doctor, is renowned for his expertise on the Cures Act, Open Notes and Electronic Medical Records. He specializes in pediatric medicine at Golisano Children's Hospital and is an associate professor within the Department of Pediatrics at the University of Rochester Medical Center. “I think that knowledge is important, and we need to know what the law says and what its parameters are and when we can use the exceptions,” Dr. Bondi says. Dr. Bondi recommends multiple resources on this topic. He suggests visiting healthit.gov and navigating to their information blocking section for informative FAQs and webinars. He also recommends the Guttmacher Institute as a source for general knowledge around adolescent health and privacy. Lastly, he explains that he was recently a part of the American Academy of Pediatrics' committee on medical liability and risk management where he helped produce a monthly column called ‘Pediatricians in Law.' This episode was recorded at the 2023 American Academy of Pediatrics National Conference and Exhibition. Some highlights from this episode include:  How to navigate difficult situations and avoid labels  The role that ethics play in this discussion Confidentially in adolescents by state Biggest pitfalls and gray areas  For more information on Children's Colorado, visit: childrenscolorado.org    

- Overview of Metastatic Triple Negative Breast Cancer, in the Context of COVID & Seasonal Flu - The Important Role of the Caregiver in Communicating with the Health Care Team - Your Important Role in Decision Making - Taking on the Role of Caregiving - What Research Tells Us about Caregivers - Caregiving for Your Loved One with Metastatic Triple Negative Breast Cancer - Challenges in Communicating with the Health Care Team - Discussion of OpenNotes & Follow-Up Appointments - Coping with Each Day, On Special Occasions, Holidays & Birthdays - Managing Family and Friends - Long Distance Caregiving - Self-Care & Stress Management Recommendations to Manage the Stress of Caregiving - Questions for Our Panel of Experts

- Overview of Metastatic Triple Negative Breast Cancer, in the Context of COVID & Seasonal Flu - The Important Role of the Caregiver in Communicating with the Health Care Team - Your Important Role in Decision Making - Taking on the Role of Caregiving - What Research Tells Us about Caregivers - Caregiving for Your Loved One with Metastatic Triple Negative Breast Cancer - Challenges in Communicating with the Health Care Team - Discussion of OpenNotes & Follow-Up Appointments - Coping with Each Day, On Special Occasions, Holidays & Birthdays - Managing Family and Friends - Long Distance Caregiving - Self-Care & Stress Management Recommendations to Manage the Stress of Caregiving - Questions for Our Panel of Experts

- Overview of Metastatic Triple Negative Breast Cancer, in the Context of COVID & Seasonal Flu - The Important Role of the Caregiver in Communicating with the Health Care Team - Your Important Role in Decision Making - Taking on the Role of Caregiving - What Research Tells Us about Caregivers - Caregiving for Your Loved One with Metastatic Triple Negative Breast Cancer - Challenges in Communicating with the Health Care Team - Discussion of OpenNotes & Follow-Up Appointments - Coping with Each Day, On Special Occasions, Holidays & Birthdays - Managing Family and Friends - Long Distance Caregiving - Self-Care & Stress Management Recommendations to Manage the Stress of Caregiving - Questions for Our Panel of Experts

- Overview of Metastatic Triple Negative Breast Cancer, in the Context of COVID & Seasonal Flu - The Important Role of the Caregiver in Communicating with the Health Care Team - Your Important Role in Decision Making - Taking on the Role of Caregiving - What Research Tells Us about Caregivers - Caregiving for Your Loved One with Metastatic Triple Negative Breast Cancer - Challenges in Communicating with the Health Care Team - Discussion of OpenNotes & Follow-Up Appointments - Coping with Each Day, On Special Occasions, Holidays & Birthdays - Managing Family and Friends - Long Distance Caregiving - Self-Care & Stress Management Recommendations to Manage the Stress of Caregiving - Questions for Our Panel of Experts

All Home Care Matters is honored to welcome Alexandra Drane the CEO of ARCHANGELS as guest to the show.   Alexandra is co-founder and CEO of ARCHANGELS. She co-founded Eliza Corporation (acquired by HMS Holdings Corp: HMSY), Engage with Grace, and three other companies (all boot-strapped). A serial entrepreneur, she is also a cashier-on-leave for Walmart. She believes communities are the front line of health, that caregivers are our country's greatest asset, and that we need to expand the definition of health to include life.    Alexandra sits on the RAND Social and Economic Policy Advisory Board, the Leadership Council for the Rosalynn Carter Institute, the Entrepreneurs Council for The United States of Care, and Harvard Medical School's Executive Council of the Division of Sleep Medicine. She is a member of the Board of Directors of C-TAC and has served as a vice chair of the Trustee Advisory Board at Beth Israel Deaconess Medical Center from 2012-2020 and returned to the role in 2021. She also serves on the Board of Advisors for Open Notes. She served for 7 years as a Governor appointed member of the Executive Committee for the Board of Directors for MassTech, until March 2022.   Alex was named to the first ever Care100 list in 2020, a Top Women in Healthcare's Entrepreneur of the Year by PR News, one of Disruptive Women in Health Care's Women to Watch, one of Boston Globe's Top 100 Women Leaders, and listed in Boston Business Journal's “40 Under 40”, as well as an inventor on multiple patents. She joined Prudential Financial as a Wellness Expert for a film series called “The State of US” that was turned into a national ad campaign and generated close to two billion impressions. She has one hobby outside of her passion for revolutionizing health care, and her love of family and adventure…car racing.   Connect with ARCHANGELS: Official Website: https://www.archangels.me/

Welcome solo and group practice owners! We are Liath Dalton and Evan Dumas, your co-hosts of Group Practice Tech. Our latest episode is an audio replay of our recent panel with ZynnyMe and Ström Consulting on what therapists need to be aware of regarding terms and conditions. We discuss the red flags from Simple Practice's new T&Cs; Zoom's updated T&Cs; the differences in these two situations; the impacts of certain T&Cs; steps to evaluate services for meeting needs as well as trust and transparency; the difference between HIPAA compliance and HIPAA consistency; healthcare companies using customer data to train AI models; Simple Practice providing untrue information about what is and isn't PHI; liability after agreeing to new T&Cs; BetterHelp's fines from the FTC; how professional organizations are responding; green and red flags to consider for service providers; informed consent for clients; short and long term EHR considerations for practice owners; voting with your dollars; recommended EHRs; Open Notes and client access to records; and backing up data. Listen here: https://personcenteredtech.com/group/podcast/ For more, visit our website. Resources EHR/Practice Management Reviews by Rob Rienhardt LPCS, M.Ed., NCC at Tame Your Practice PCT Resources Group Practice Care Premium for weekly (live & recorded) direct support & consultation service with PCT consulting team + monthly session co-facilitated by Eric Ström, JD PhD LMHC + assignable staff HIPAA Security Awareness: Remote Workspaces training for all team members + access to Remote Workspace Center with step-by-step tutorials & registration forms for securing documenting Remote Workspaces (for *all* team members at no per-person cost) + assignable staff HIPAA Security Awareness: Bring Your Own Device training + access to Device Security Center with step-by-step device-specific tutorials & registration forms for securing documenting personal & practice-provided devices(for *all* team members at no per-person cost) + more   PCT's Group Practice Service Selection Workbook & Worksheets (free!! Step 1 of the PCT Way) -- support for selecting HIPAA-secure, effective, and economical phone, video, and communication platforms (and your other practice functionality needs, too!)   PCT's HIPAA Risk Analysis & Risk Mitigation Planning service for mental health group practices -- care for your practice using our supportive, shame-free risk analysis and mitigation planning service. You'll have your Risk Analysis done within 2 hours, performed by a PCT consultant, using a tool built specifically for mental health group practice, and a mitigation checklist to help you reduce your risks.   PCT CE Training: The “Open Notes” Rule and Your EHR Choice: Legal Compliance and Client Safety Now and in The Future presented by Rob Rienhardt, LPCS M.Ed., NCC, Eric Ström, JD PhD LMHC, and Roy Huggins, LPC NCC

As a result of the 21st Century Cures Act, patients in the United States have greater and more immediate access to their care notes. What are open notes, and what is the role of the chaplain in this new paradigm? As we noted in a 2021 webinar, “Healthcare systems are required to make a patient's electronic medical record directly available via secure portal under the Cures Act. This direct access includes all documentation made by healthcare chaplains, including templates with pre-populated check boxes and narrative notes.” How should chaplain notes be included in electronic health information? Join three leading chaplain researchers for a research-informed discussion of the Cures Act, open notes, and what chaplains need to know about how they can document encounters. We are grateful to Transforming Chaplaincy for co-sponsoring this webinar. We are joined by: Jo Hirschmann, Senior Director of Education, Center for Spirituality and Health @Mount Sinai Health System Csaba Szilagyi, Director, Transforming Chaplaincy Paul Galchutt, Research Staff Chaplain, M Health Fairview

Thanks for joining us on Pickleball Therapy - the podcast dedicated to your pickleball improvement. If you have not yet subscribed to the podcast ... wait what?? you haven't subscribed? ... you know what to do.If you can STOP chasing winners, you will win more. What??? Yes. When you chase winners, you make more mistakes. When you make more mistakes, you lose more points. Simple as that.Stick with the program: make less errors - and you will win more rallies (and games). One powerful way to do this is by going for less winners. Stop playing high risk pickleball and you will play better.In the riff, I share with you parting notes about the 2023 US Open tournament and what I learned from playing it.Join us inside our next Pickleball System class. ⁠⁠⁠⁠Click here to register or for more information.⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠You can get your visual training here.⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Check out Tyrol shoes here.⁠⁠⁠⁠⁠ Use code BP10 at checkout (if you are a System member, use the code inside your course).⁠⁠⁠⁠⁠Sign up here to get our weekly emails⁠⁠⁠⁠⁠.⁠⁠⁠⁠⁠Our mental book recommendations here.⁠⁠⁠⁠⁠⁠⁠⁠Getting Started Beginner Materials here.⁠⁠⁠If you like the podcast, please give it a rating. And share it with your friends. If you like it, they probably will too.Stay well,Tony

Catherine M. DesRoches, co-senior author of the study and executive director of OpenNotes, the international movement based at the Beth Israel Deaconess Medical Centre in Boston Learn more about your ad choices. Visit megaphone.fm/adchoices

The possibility that patients will suddenly have access to their notes has caused some anxiety for GPs in England. The department of health's plans to allow patients to prospectively access their medical record lead to fears about increased workloads, misunderstandings, and safety - and the plans have now been pushed back. In this podcast the Deep Breath In team are joined by the authors of a recent article in The BMJ to explore those fears, hear about the potential benefits, and understand the evidence behind open notes. Our guests; Charlotte Blease, and interdisciplinary health researcher at OpenNotes, Beth Israel Deaconess Medical Center/Harvard Medical School. Brian McMillan, a GP and senior clinical lecturer at the University of Manchester Gail Davidge, research associate at the University of Manchester The article they're discussing is a practice pointer on Adapting to transparent medical records: international experience with “open notes” https://www.bmj.com/content/379/bmj-2021-069861

Medical notes capture information that informs decision making. They can also reveal how healthcare providers are judging their patients, and patients reading those notes can feel offended, shamed and stigmatized by what they read. Drawing from her work as a Latina primary care clinician and health equity advocate, and as a Harvard Professor, Dr. Fernández highlights the importance of language and culture in medicine and in our medical notes. In this episode,we explore how language and literacy shape our ability to offer equitable, meaningful, and respectful care to Latinx, Black and other marginalized populations.

Medical notes capture information that informs decision making. They can also reveal how healthcare providers are judging their patients, and patients reading those notes can feel offended, shamed and stigmatized by what they read. Drawing from her work as a Latina primary care clinician and health equity advocate, and as a Harvard Professor, Dr. Fernández highlights the importance of language and culture in medicine and in our medical notes. In this episode,we explore how language and literacy shape our ability to offer equitable, meaningful, and respectful care to Latinx, Black and other marginalized populations.

Medical notes capture information that informs decision making. They can also reveal how healthcare providers are judging their patients, and patients reading those notes can feel offended, shamed and stigmatized by what they read. Drawing from her work as a Latina primary care clinician and health equity advocate, and as a Harvard Professor, Dr. Fernández highlights the importance of language and culture in medicine and in our medical notes. In this episode,we explore how language and literacy shape our ability to offer equitable, meaningful, and respectful care to Latinx, Black and other marginalized populations.

On April 21, 2021 the “21st Century Cures Act” mandated that all healthcare providers grant clients/patients access to their chart “without delay” and without charge. Make sure you listen to all 3 episodes as we have noted psychiatrist and trainer in medical record keeping, Dr. Tony Thrasher, to answer our questions. In this episode, Dr. Thrasher outlines exceptional situations when the provider can keep notes private. We also discuss the importance of reviewing the prognosis with patients. Hosts: Eyrn, Toshia, Alan Guest: Tony Thrasher, MD, DFAPA

On April 21, 2021 the “21st Century Cures Act” mandated that all healthcare providers grant clients/patients access to their chart “without delay” and without charge. Make sure you listen to all 3 episodes as we have noted psychiatrist and trainer in medical record keeping, Dr. Tony Thrasher, to answer our questions. In this episode, we discuss our takes on using "woke language" in our documentation. Hosts: Eyrn, Toshia, Alan Guest: Tony Thrasher, MD, DFAPA

On April 21, 2021 the “21st Century Cures Act” mandated that all healthcare providers grant clients/patients access to their chart “without delay” and without charge. While providing access to one's chart usually works very smoothly for medical treatment, it's a different story for psychiatric and psychological treatment. For example, it's common for a client to lack insight about themselves—that's a big reason for going to therapy. So how will the treatment be affected when the client reads about how their psychologist or psychiatrist thinks they don't know what the problem actually is? Make sure you listen to all 3 episodes as we have noted psychiatrist and trainer in medical record keeping, Dr. Tony Thrasher, to help us answer these questions. Hosts: Eyrn, Toshia, Alan Guest: Tony Thrasher, MD, DFAPA

The “open note” feature of the 21st Century Cures Act provides significant benefits to patients who want immediate access to their results and medical record.  But, it has also resulted in some unintended consequences.  This podcast will include two panelists; one who actively works with healthcare organizations to mitigate their risk and malpractice exposure related to “open notes” and one who brings the patient perspective to this law and the impact on patient care.

Tom Delbanco, MD, and Catherine DesRoches, DrPH, Co-Founder and Executive Director respectively of OpenNotes, discuss common concerns and best practices when sharing clinical notes with patients. Read the full toolkit on this topic to learn more: https://bitly.is/37AnIiT.

It’s a Rami-chat as Alex Ramirez graces JBW with a 30-plus-minute discussion, we look at the latest Hall of Fame inductees, the opening of corona camps, hit some notes, including Coco Balentien, and handle HighHeat.

Welcome to the Open Notes Podcast by the Fort Collins Symphony. My name is Jeremy Cuebas and I'm your host for this exciting dive into the rich world of Classical Music.This podcast is for anybody interested in learning more about Classical Music, from total newbies to seasoned veterans. If you want to learn more, then this is the place to be.This episode introduces the podcast and what you can expect by subscribing.Visit the Fort Collins Symphony and view our upcoming concerts at FCSymphony.orgFollow us on Facebook and Instagram at @FortCollinsSymphonyClick here to sign up for the symphony's email listYou can learn more about your host Jeremy at JDCuebas.com, and explore his podcast Podium Time at PodiumTimePod.com.Thank you for joining us.Support the show (https://www.coloradogives.org/FortCollinsSymphony/overview)

Meet Alexandra Drane:Alexandra Drane is an entrepreneur extraordinaire. Currently, she is the co-founder and CEO of ARCHANGELS. Previously, she co-founded Eliza Corporation, Engage with Grace, Seduce Health, and Rebel Health. She served as a Wellness Expert for Prudential Financial and is also a cashier-on-leave for Walmart. She is a board member or advisor for many organizations including RAND Health, Open Notes, and Harvard Medical School's Executive Council of the Division of Sleep Medicine.Key Insights:For Alexandra, community is the front line of health. She believes that healthcare should be driven by love and compassion, and that we are all more alike as humans than we are different.Humanity in Healthcare. Alexandra shares a personal anecdote about how healthcare is sometimes rigid and callous to the very patients it's supposed to serve. Healthcare should be guided by kindness, support, and most importantly, love. (12:49)Don't Get Comfortable. Making assumptions is risky. Especially with COVID-19, much of healthcare is in uncharted territory. If you feel confident that you have all the right answers, be afraid because that bubble might pop. (19:57)Life on the Edge. Part of being an entrepreneur is experiencing the constant whiplash between success and failure. There will always be ups and downs, so make sure to have a support system for the downs. At the same time, not everyone needs to be an entrepreneur, and that's okay. (24:46)This episode is hosted by Marcus Osborne. He is a member of the Advisory Council for Day Zero and is the Senior Vice President for Walmart Health.Relevant Links:Read more about ArchangelsListen to her TEDMED talk: “What five questions can save your Life or end it?”“Supporting unpaid caregivers in crisis: A talk with Alexandra Drane” by McKinsey & CompanyFollow Alexandra on Twitter  

Brendan and Ernmardia discuss the slow start to Michelle's season and the controversies surrounding a couple different contestants and why they faired differently and recap their performances in the Rose League and our thoughts on the guys in general. Enjoy! Follow on Instagram @podcastingfortherightreasons Follow on Twitter @rightreasonspod join our Rose League @podcastingfortherightreasons Support our Patreon @patreon.com/Podcastingfortherightreasons This podcast is powered by Pinecast.

Mark Wietecha, CEO of Children's Hospital Association, joins Innovators to talk about the progress made in pediatric research and what he expects from his organization and children's hospitals around the country in the coming years. From the Children's Hospital's website: Mark is CEO of Children's Hospital Association (CHA), representing over 200 children's hospitals and major pediatric programs with a mission to improve child health through innovation in care, education, and research. CHA advances these aims by leading and supporting national collaboration in public policy and pediatric practice improving the access, quality, and costs of care for children.   Prior to joining CHA, Mark was a management consultant with Kurt Salmon Associates, where he served as the firm's executive chairman, responsible for over 2,000 professionals working across five continents in six languages. His professional work in both adult academic and pediatric medicine has been recognized as among the best in the country, and he has advised most of the U.S. News & World Report “Best” medical centers and children's hospitals. Mark has been named among the nation's “Most Influential Consultants” by Consulting Magazine and as one of the "5 Healthcare Leaders to Know" by Becker's Review.  He is a regular presenter on the future of health care and cited in such media as the New York Times, Wall Street Journal, Politico, and National Public Radio. Mark currently serves on the boards of the Children's Hospital Association, the Council of Teaching Hospitals and Health Systems of the AAMC, the Coalition to Protect America's Health Care, the National Foundation to End Child Abuse and Neglect, OpenNotes, an organization advancing greater patient engagement in their own care, and Virtual PICU Systems, where he is past chairman of the board. He serves on the advisory boards of the Child and Adolescent Health Measurement Initiative at the Johns Hopkins University, the University of Michigan's CMS national quality initiative, and the New York University Sala Institute, with a mission to integrate pediatric care across a large academic teaching hospital. Mark is a former trustee and past chairman of the board of overseers of the UCLA Health System, a former director and past deputy chairman of the board of Management Consulting Group, a public London-listed company, and a former director and past chairman of the board of Kurt Salmon Associates.   Mark's academic training includes a Master of Science in pharmacology from The Ohio State University and a Master of Business Administration from Indiana University. He is based in Washington, D.C. Innovators is a podcast production of Harris Search.  *The views and opinions shared by the guests on Innovators do not necessarily reflect the views of the interviewee's institution or organization.*

In this episode, I share a few thoughts on my understanding of the new OpenNotes rules that apply to licensed practitioners. Please note that these are not meant to be a full and comprehensive guide, but rather reflections on some changes that I have implemented in my own practice based on the rules, and my interpretation of how they apply. Please consult a lawyer before making changes or decisions about how these rules apply to your own practice! A transcript and additional information can be found on my website here. See my full review of Practice Better software. Resources Federal Rules mandating open notes (this whole website is excellent) More info about exceptions FAQ noting that practitioners are not required to make notes available proactively, but only by request Here's the full "information blocking" FAQ (see the rest of the HealthIT.gov website for additional info) --- Send in a voice message: https://anchor.fm/intheclinic/message

Mark Wietecha, CEO of Children's Hospital Association, joins Innovators to talk about the progress made in pediatric research and what he expects from his organization and children's hospitals around the country in the coming years. From the Children's Hospital's website: Mark is CEO of Children's Hospital Association (CHA), representing over 200 children's hospitals and major pediatric programs with a mission to improve child health through innovation in care, education, and research. CHA advances these aims by leading and supporting national collaboration in public policy and pediatric practice improving the access, quality, and costs of care for children.   Prior to joining CHA, Mark was a management consultant with Kurt Salmon Associates, where he served as the firm's executive chairman, responsible for over 2,000 professionals working across five continents in six languages. His professional work in both adult academic and pediatric medicine has been recognized as among the best in the country, and he has advised most of the U.S. News & World Report “Best” medical centers and children's hospitals. Mark has been named among the nation's “Most Influential Consultants” by Consulting Magazine and as one of the "5 Healthcare Leaders to Know" by Becker's Review.  He is a regular presenter on the future of health care and cited in such media as the New York Times, Wall Street Journal, Politico, and National Public Radio. Mark currently serves on the boards of the Children's Hospital Association, the Council of Teaching Hospitals and Health Systems of the AAMC, the Coalition to Protect America's Health Care, the National Foundation to End Child Abuse and Neglect, OpenNotes, an organization advancing greater patient engagement in their own care, and Virtual PICU Systems, where he is past chairman of the board. He serves on the advisory boards of the Child and Adolescent Health Measurement Initiative at the Johns Hopkins University, the University of Michigan's CMS national quality initiative, and the New York University Sala Institute, with a mission to integrate pediatric care across a large academic teaching hospital. Mark is a former trustee and past chairman of the board of overseers of the UCLA Health System, a former director and past deputy chairman of the board of Management Consulting Group, a public London-listed company, and a former director and past chairman of the board of Kurt Salmon Associates.   Mark's academic training includes a Master of Science in pharmacology from The Ohio State University and a Master of Business Administration from Indiana University. He is based in Washington, D.C. Innovators is a podcast production of Harris Search.  *The views and opinions shared by the guests on Innovators do not necessarily reflect the views of the interviewee's institution or organization.*

Liz Salmi, a self-described "former punk rock drummer turned cancer patient, and now senior research strategist," joins the show to paint a successful case study of joint-patient, physician, and researcher advocacy. She tells the story about the data-driven and evidence-based case for "open progress notes" and the impact they can have on patient care. Open progress notes are the after visit notes a physician or clinician writes into a patient charts that historically have only been visible to doctors. Thanks to a policy change, patients can now have more control over their own care. In some cases they may also possess the power to correct discrepancies and have a better understanding about the direction of their own care. You can follow Liz on Twitter @TheLizArmy Learn more about your ad choices. Visit podcastchoices.com/adchoices

The 21st Century CURES act has mandated that starting on April 5th, 2021 patient notes (with a few very narrow exceptions) must be easily available to patients via their patient portal. How did this come about, and what does it mean for us? Click Here for full show notes   This lecture was presented at the 2021 Maine Medical Center Winter Symposium. For more information on the symposium click here. Sam Wood, MD

Welcome to The Barrier Breakdown: Disrupting Mental Health!  This week we are joined by Dr. Jacob M. Appel. Dr. Appel is an Associate Professor of Psychiatry and Medical Education at the Icahn School of Medicine at Mount Sinai where he serves as Director of Ethics Education in Psychiatry and Assistant Director of Academy for Medicine & the Humanities.  He is currently co-chair of the Group for the Advancement of Psychiatry's Committee on Psychiatry and the Law and a judge for the 2021 National Book Critics Circle Awards. We discuss the nuances of ethical conduct for clinicians both in and out of the office, how ethical practice has changed to adapt to Covid-19, and the importance of private medical records in light of the Open Notes component in the Cares Act.  You can find Dr. Appel's books here: https://www.amazon.com/Jacob-M.-Appel/e/B00FIG0XVM%3Fref=dbs_a_mng_rwt_scns_share All our upcoming continuing education events can be found at www.cbicenterforeducation.com You can watch or listen to The Barrier Breakdown on any of the following streaming services: YouTube - https://www.youtube.com/channel/UCyc6xZzY7ra3L5pI2g5GKrw Podbean - https://cbi.podbean.com Spotify - https://open.spotify.com/show/2ETgUdDykWN96Tv26PWyZ2 Apple Podcasts - https://podcasts.apple.com/us/podcast/the-barrier-breakdown-disrupting-mental-health/id1546097545 Follow us on social media: CBI: https://www.facebook.com/CognitiveBehaviorInstitute Center for Ed: https://www.facebook.com/CBIcenterforeducation Instagram: @cognitivebehaviorinstitute Twitter: CBI_Pittsburgh :::::::::::::::::::: Music: Basic Majesty - Ashley Shadow Support by RFM - NCM: https://youtu.be/XVwlTTMgw5c  ::::::::::::::::::::

Welcome solo and group practice owners! We are Liath Dalton and Roy Huggins, your co-hosts of Person Centered Tech. In our latest episode, we’re talking about choosing an EHR system and the information blocking (“Open Notes”) rule.  We discuss how information blocking and HIPAA are different, which systems are covered by the new rule, how to know if switching systems makes sense, what the new rule enforces and what it doesn’t, coming cultural shifts in the way we use healthcare services, the different types of EHRs, training + supporting your team’s documentation, worldwide shifts in healthcare privacy, the nuances of psychotherapy notes vs. other healthcare notes, the future of personal health records, charging for releasing records, getting info from your current practice management system on their plans for the future, implications for prescribers, and our free CE event on this topic where you can learn more.  Listen here: https://personcenteredtech.com/group/podcast/ Stay tuned for future episodes! For more, visit our website. Resources CE Training: The “Open Notes” Rule and Your EHR Choice: Legal Compliance and Client Safety Now and in The Future with Eric Ström JD PhD LMHC; Rob Reinhardt, LCHMCS, M.Ed., NCC; and Roy Huggins, LPC NCC CE Training: How We Need to Give Clients Access to Their Records, Now and in the Future with Eric Ström, JD PhD LMHC, and Roy Huggins, LPC NCC Free Presentation: Federal “Open Notes Rule” explained by Eric Ström, JD PhD LMHC, and Roy Huggins, LPC NCC Group Practice Office Hours (direct support and consultation service from PCT consulting team and Eric Strom, JD PhD LMHC)   PCT's Group Practice HIPAA Security Programs (that also help you leverage your practice tech tools to optimize functionality, efficiency, and cost-effectiveness!)  

Hey Everybody!  Happy Belated Nurses' Week!  We are so sorry we missed you last week!  Jamie had to have unexpected surgery, but we're back in the swing of things.  Come along for the ride that is the 21st Century Cures Act....and OH! the Open Notes!!!!

New federal law gives patients access to almost everything in their medical record, including clinical notes.

Liz Salmi is Senior Strategist of Dissemination for OpenNotes at Beth Israel Deaconess Medical Center. In this role, Liz helps hospitals and health systems understand the changing nature of patient-clinician communication in the digital age, and interpret and implement research emerging from the “open notes” movement. After being diagnosed with a malignant brain tumor at age 29, Liz immediately put her digital communications skills to use by blogging, chronicling her daily symptoms, and seeing how much she could learn from her online patient portal. Today, her research areas of interest include studying how healthcare professionals and patients are connecting through digital tools and joining as partners in research. Liz leads the Brain Cancer Quality of Life Collaborative, a multi-stakeholder group dedicated to advancing science and improving the quality of life for people with malignant brain tumors. Liz was named e-Patient of the Year by the Society for Participatory Medicine.

In this week's installment of Clinical Correlation, Renee Kohanski, MD, unpacks the new Open Notes mandate. Clinical Correlation is published every other Monday on the Psychcast feed. You can email the show at podcasts@mdedge.com, and you can learn more about MDedge Psychiatry here: https://www.mdedge.com/podcasts/psychcast.

Welcome to The Barrier Breakdown: Disrupting Mental Health! This week we are joined by Steve Oneill, the Open Note specialist in behavioral and mental health, faculty at the center of bioethics at Harvard medical school, and adjunct assistant professor at Simmons university. He is interested in how the transparency of Open Note writing in behavioral health can foster trust and partnership, patient engagement, and can even destigmatize mental health. As a component of the Cures Act, Open Notes was supposed to go live last November, but now it's beginning on April 5th! Listen in to find out the timetable for these changes, the scope of the notes that will be made open, and the ethical and legal concerns of omissions. For more information on Open Notes and the Cures Act, head to https://www.opennotes.org/  All our upcoming continuing education events can be found at www.cbicenterforeducation.com You can watch or listen to The Barrier Breakdown on any of the following streaming services: Youtube - https://www.youtube.com/channel/UCyc6xZzY7ra3L5pI2g5GKrw   Podbean - https://cbi.podbean.com  Spotify - https://open.spotify.com/show/2ETgUdDykWN96Tv26PWyZ2  Apple Podcasts - https://podcasts.apple.com/us/podcast/the-barrier-breakdown-disrupting-mental-health/id1546097545  Follow us on social media:  CBI: https://www.facebook.com/CognitiveBehaviorInstitute  Center for Ed: https://www.facebook.com/CBIcenterforeducation  Instagram: @cognitivebehaviorinstitute  Twitter: CBI_Pittsburgh :::::::::::::::::::: Music: Basic Majesty - Ashley Shadow Support by RFM - NCM: https://youtu.be/XVwlTTMgw5c  ::::::::::::::::::::

With the implementation of the 2016 Cures Act, there are big changes coming to healthcare. One of those changes include increasing patient access to their healthcare information. Soon patient notes will be available via online portals. This is an incredibly huge adjustment for physicians and providers who are used to writing notes that are read only by other healthcare workers. In this episode I discuss several ethical issues related to open access to patient notes. I also review some recommendations from the American Academy of Family Physicians for how to prepare for these changes. Through Ethically Sourced, I that generating discussions on Clinical Medical Ethics and Culturally Competent Care will have a positive impact on the lives of patients that look like me. --- Send in a voice message: https://anchor.fm/blackdoctorspodcast/message Support this podcast: https://anchor.fm/blackdoctorspodcast/support

Have you heard? OpenNotes – a new, federal requirement mandating that clinicians make certain practitioner notes more available to patients – is fast-approaching, going into effect April 5, 2021. Preparing for OpenNotes and coming into compliance with this new program is an important opportunity for your organization to not only avoid noncompliance penalties, but also to improve patient engagement, reduce potential liability issues, and strengthen patient-physician relationships through increased transparency. But what exactly do these new regulations mandate, and what are best practices for meeting and exceeding the requirements? We sat down with Medical Advantage's very own OpenNotes expert, Chad Anguilm, to better understand this new requirement and to walk through his 5-step solution to a successful OpenNotes rollout in your organization.This is the sixth episode in the Medical Advantage Podcast, where each we take time each episode to discuss the ideas and technologies changing healthcare, and the best practices your organization can take to stay productive and profitable. Subscribe wherever you get your podcasts to ensure you never miss an episode. To learn more visit our website or contact us at info@medicaladvantage.com

Ep. #38: Documentation And Open Notes by Collaborative Family Healthcare Association

In this episode Dr. V talks to Dr. Cait DesRoches, executive director of the OpenNotes Project. OpenNotes is an international movement that's making health care more transparent by inviting doctors, nurses and therapists to share their notes with their patients. The conversation centers on the Cures Rule, a federal mandate requiring hospitals to share notes with patients. In the realm of advocacy and academics Dr. DesRoches is an absolute powerhouse. Listen as she offers insight on this historical law and what it could mean for doctors, hospitals and, most importantly, patients. Learn more about your ad choices. Visit megaphone.fm/adchoices

The OpenNotes project is a program based in the Beth Israel Deaconess Hospital that strives to make hospital EHR notes accessible to patients. OpenNotes has gained serious adoption among hospitals across the U.S. with over 21 million patient having access to their notes. But there remain a lot of questions about how this works for patients and doctors. OpenNotes Executive Director Cait DesRoches enters The Exam Room in this episode to discuss how this innovative program works and what it means for the changing landscape of medicine. A great primer on a remarkable program with insight into a more transparent medical future. Show Notes The OpenNotes site. Great information on how your hospital can participate in OpenNotes. https://www.opennotes.org   Access to physician notes is only as good as the notes themselves. Dr. Vartabedian references a 33 charts post on this subject. https://33charts.com/physician-notes/ Learn more about your ad choices. Visit megaphone.fm/adchoices