Podcast appearances and mentions of liz salmi

Kirk & Lacy on shifting research funding away from federal grants: what happens to community partnerships when the money—and the rules—change? Summary Three Audiences, One Report Lacy Fabian and Kirk Knestis untangle a fundamental confusion in community health research: there are three distinct audiences with competing needs—funders want accountability, researchers want generalizable knowledge, and communities want immediate benefit. Current practice optimizes for the funder, producing deliverables that don’t help the people being served. The alternative isn’t “no strings attached” anarchy but rather honest negotiation about who benefits and who bears the burden of proof. Kirk’s revelation about resource allocation is stark: if one-third of evaluation budgets goes to Click here to view the printable newsletter with images. More readable than a transcript. Contents Table of Contents Toggle EpisodeProem1. Introductions & Career Transitions2. The Catalyst: Why This Conversation Matters3. The Ideal State: Restoring Human Connection4. The Localization Opportunity5. Evidence + Story = Impact6. The Funder Issue: Who Is This Truly Benefiting?7. Dissemination, Implementation & Vested Interest8. Data Parties – The Concrete Solution9. No Strings Attached: Reimagining Funder Relationships10. Balancing Accountability and Flexibility11. Where the Money Actually Goes12. The Pendulum Swings13. The Three Relationships: Funder, Researcher, Community14. Maintaining Agency15. Listen and LearnReflectionRelated episodes from Health Hats Please comment and ask questions: at the comment section at the bottom of the show notes on LinkedIn  via email YouTube channel  DM on Instagram, TikTok to @healthhats Substack Patreon Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk  Leon van Leeuwen: editing and site management Oscar van Leeuwen: video editing Julia Higgins: Digit marketing therapy Steve Heatherington: Help Desk and podcast production counseling Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci Podcast episode on YouTube Inspired by and Grateful to: Ronda Alexander, Eric Kettering, Robert Motley, Liz Salmi, Russell Bennett Photo Credits for Videos Data Party image by Erik Mclean on Unsplash Pendulum image by Frames For Your Heart on Unsplash Links and references Lacy Fabian, PhD, is the founder of Make It Matter Program Consulting and Resources (makeitmatterprograms.com). She is a research psychologist with 20+ years of experience in the non-profit and local, state, and federal sectors who uses evidence and story to demonstrate impact that matters. She focuses on helping non-profits thrive by supporting them when they need it—whether through a strategy or funding pivot, streamlining processes, etc. She also works with foundations and donors to ensure their giving matters, while still allowing the recipient non-profits to maintain focus on their mission. When she isn't making programs matter, she enjoys all things nature —from birdwatching to running —and is an avid reader. Lacy Fabian’s Newsletter: Musings That Matter: Expansive Thinking About Humanity’s Problems Kirk Knestis is an expert in data use planning, design, and capacity building, with experience helping industry, government, and education partners leverage data to solve difficult questions. Kirk is the Executive Director of a startup community nonprofit that offers affordable, responsive maintenance and repairs for wheelchairs and other personal mobility devices to northern Virginia residents. He was the founding principal of Evaluand LLC, a research and evaluation consulting firm providing customized data collection, analysis, and reporting solutions, primarily serving clients in industry, government, and education. The company specializes in external evaluation of grant-funded projects, study design reviews, advisory services, and capacity-building support to assist organizations in using data to answer complex questions.  Referenced in episode Zanakis, S.H., Mandakovic, T., Gupta, S.K., Sahay, S., & Hong, S. (1995). “A review of program evaluation and fund allocation methods within the service and government sectors.” Socio-Economic Planning Sciences, Vol. 29, No. 1, March 1995, pp. 59-79. This paywalled article presents a detailed analysis of 306 articles from 93 journals that review project/program evaluation, selection, and funding allocation methods in the service and government sectors. Episode Proem When I examine the relationships between health communities and researchers, I become curious about the power dynamics involved. Strong, equitable relationships depend on a balance of power. But what exactly are communities, and what does a power balance look like? The communities I picture are intentional, voluntary groups of people working together to achieve common goals—such as seeking, fixing, networking, championing, lobbying, or communicating for best health for each other. These groups can meet in person or virtually, and can be local or dispersed. A healthy power balance involves mutual respect, participatory decision-making, active listening, and a willingness to adapt and grow. I always listen closely for connections between communities and health researchers. Connections that foster a learning culture, regardless of their perceived success. Please meet Lacy Fabian and Kirk Knestis, who have firsthand experience in building and maintaining equitable relationships, with whom I spoke in mid-September. This transcript has been edited for clarity with help from Grammarly. Lacy Fabian, PhD, is the founder of Make It Matter Program Consulting and Resources. She partners with non-profit, government, and federal organizations using evidence and storytelling to demonstrate impact and improve program results. Kirk Knestis is an expert in data use planning, design, and capacity building. As Executive Director of a startup community nonprofit and founding principal of Evaluand LLC. He specializes in research, evaluation, and organizational data analysis for complex questions. 1. Introductions & Career Transitions Kirk Knestis: My name’s Kirk Knestis. Until just a few weeks ago, I ran a research and evaluation consulting firm, Evaluand LLC, outside Washington, DC. I’m in the process of transitioning to a new gig. I’ve started a non-profit here in Northern Virginia to provide mobile wheelchair and scooter service. Probably my last project, I suspect. Health Hats: Your last thing, meaning you’re retiring. Kirk Knestis: Yeah, it’s most of my work in the consulting gig was funded by federal programs, the National Science Foundation, the Department of Ed, the National Institutes of Health, and funding for most of the programs that I was working on through grantees has been pretty substantially curtailed in the last few months. Rather than looking for a new research and evaluation gig, we’ve decided this is going to be something I can taper off and give back to the community a bit. Try something new and different, and keep me out of trouble. Health Hats: Yeah, good luck with the latter. Lacy, introduce yourself, please. Lacy Fabian: Hi, Lacy Fabian. Not very dissimilar from Kirk, I’ve made a change in the last few months. I worked at a large nonprofit for nearly 11 years, serving the Department of Health and Human Services. But now I am solo, working to consult with nonprofits and donors. The idea is that I would be their extra brain power when they need it. It’s hard to find funding, grow, and do all the things nonprofits do without a bit of help now and then. I’m looking to provide that in a new chapter, a new career focus. Health Hats: Why is this conversation happening now? Both Kirk and Lacy are going through significant changes as they move away from traditional grant-funded research and nonprofit hierarchies. They’re learning firsthand what doesn’t work and considering what might work instead—this isn't just theory—it’s lived experience. 2. The Catalyst: Why This Conversation Matters Health Hats: Lacy, we caught up after several years of working together on several projects. I’m really interested in community research partnerships. I’m interested in it because I think the research questions come from the communities rather than the researchers. It’s a fraught relationship between communities and researchers, often driven by power dynamics. I’m very interested in how to balance those dynamics. And I see some of this: a time of changing priorities and people looking at their gigs differently —what are the opportunities in this time of kind of chaos, and what are the significant social changes that often happen in times like this? 3. The Ideal State: Restoring Human Connection Health Hats: In your experience, especially given all the recent transitions, what do you see as the ideal relationship between communities and researchers? What would an ideal state look like? Lacy Fabian: One thing I was thinking about during my walk or run today, as I prepared for this conversation about equitable relationships and the power dynamics in this unique situation we’re in, is that I feel like we often romanticize the past instead of learning from it. I believe learning from the past is very important. When I think about an ideal scenario, I feel like we’re moving further away from human solidarity and genuine connection. So, when considering those equitable relationships, it seems to me that it’s become harder to build genuine connections and stay true to our humanness. From a learning perspective, without romanticizing the past, one example I thought of is that, at least in the last 50 years, we’ve seen exponential growth in the amount of information available. That's a concrete example we can point to. And I think that we, as a society, have many points where we could potentially connect. But recent research shows that’s not actually the case. Instead, we’re becoming more disconnected and finding it harder to connect. I believe that for our communities, even knowing how to engage with programs like what Kirk is working on is difficult. Or even in my position, trying to identify programs that truly want to do right, take that pause, and make sure they aim to be equitable—particularly on the funder side—and not just engage in transactions or give less generously than they intend if they’re supporting programs. But there are strings attached. I think all of this happens because we stop seeing each other as human beings; we lose those touchpoints. So, when I think about an ideal situation, I believe it involves restoring those connections, while more clearly and openly acknowledging the power dynamics we introduce and the different roles we assume in the ecosystem. We can’t expect those dynamics to be the same, or to neutralize their impact. However, we can discuss these issues more openly and consistently and acknowledge that they might influence outcomes. So, in an ideal scenario, these are the kinds of things we should be working toward. 4. The Localization Opportunity Health Hats: So Kirk, it strikes me listening to Lacy talk that there’s, in a way, the increased localization of this kind of work could lead to more relationships in the dynamic, whereas before, maybe it was. Things were too global. It was at an academic medical center and of national rather than local interest. What are your thoughts about any of that? Kirk Knestis: Yeah, that’s an excellent question. First, I want to make sure I acknowledge Lacy’s description philosophically, from a value standpoint. I couldn’t put it any better myself. Certainly, that’s got to be at the core of this. Lacy and I know each other because we both served on the board of the Professional Evaluation Society on the East Coast of the United States, and practice of evaluation, evaluating policies and programs, and use of resources, and all the other things that we can look at with evidence, the root of that word is value, right? And by making the values that drive whatever we’re doing explicit, we’re much more likely to connect. At levels in, way, in ways that are actually valuable, a human being level, not a technician level. But to your question, Danny, a couple of things immediately leap out at me. One is that there was always. I was primarily federally funded, indirectly; there’s always been a real drive for highly rigorous, high-quality evaluation. And what that oftentimes gets interpreted to mean is generalizable evaluation research. And so that tends to drive us toward quasi-experimental kinds of studies that require lots and lots of participants, validated instrumentation, and quantitative data. All of those things compromise our ability to really understand what’s going on for the people, right? For the real-life human stakeholders. One thing that strikes me is that we could be as funding gets picked up. I’m being optimistic here that funding will be picked up by other sources, but let’s say the nonprofits get more involved programs that in the past and in the purview of the feds, we’re going to be freed of some of that, I hope, and be able to be more subjective, more mixed methods, more on the ground and kind of maturein the, dirt down and dirty out on the streets, learning what’s going on for real humans. As opposed to saying, “Nope, sorry, we can’t even ask whether this program works or how it works until we’ve got thousands and thousands of participants and we can do math about the outcomes.” So that’s one way I think that things might be changing. 5. Evidence + Story = Impact One of the big elements I like to focus on is the evidence—the kind of, so what the program is doing—but also the story. Making sure both of those things are combined to share the impact. And one of the things that I think we aren’t great about, which kind of circles back to the whole topic about equitable relationships. I don’t often think we’re really great at acknowledging. Who our report outs are for 6. The Funder Issue: Who Is This Truly Benefiting? Health Hats: Yes, who’s the audience? Lacy Fabian: Describing the kind of traditional format, I’m going to have thousands of participants, and then I’m going to be able to start to do really fancy math. That audience is a particular player who’s our funder. And they have different needs and different goals. So so many times, but that’s not the same as the people we’re actually trying to help. I think part of actually having equity in practice is pushing our funders to acknowledge that those reports are really just for them. And what else are we doing for our other audiences, and how can we better uphold that with our limited resources? Do we really need that super fancy report that’s going to go on a shelf? And we talk about it a lot, but I think that’s the point. We’re still talking about it. And maybe now that our funding is shifting, it’s an excellent catalyst to start being smarter about who our audience is, what they need, and what’s best to share with them. 7. Dissemination, Implementation & Vested Interest Health Hats: So, in a way, that’s not only do we need to think about who the work is for. How do we get it to those people? So how do we disseminate to those people? And then, what are the motivations for implementation? And it seems to me that if I have a vested interest in the answer to the question, I am more likely to share it and to try to figure out what the habits are—the changing habits that the research guides. What are some examples of this that you’ve, in your experience, that either you feel like you hit it like this, worked, or where you felt like we didn’t quite get there? So, what are your thoughts about some practical examples of that? Kirk Knestis: I was laughing because I don’t have so many examples of the former. I’ve got lots of examples of the latter. Health Hats: So start there. 8. Data Parties – The Concrete Solution Kirk Knestis: A good example of how I’ve done that in the past is when clients are willing to tolerate it. We call them different things over the years, like a data party. What we do is convene folks. We used to do it in person, face-to-face, but now that we’re dealing with people spread out across the country and connected virtually, these meetings can be done online. Instead of creating a report that just sits on a shelf or a thumb drive, I prefer to spend that time gathering and organizing the information we collect into a usable form for our audiences. This acts as a formative feedback process rather than just a summative benchmark. Here’s what we’ve learned. You share the information with those who contributed to it and benefit from it, and you ask for their thoughts. We’re observing that this line follows a certain path. Let’s discuss what that means or review all the feedback we received from this stakeholder group. It’s quite different from what we’ve heard from other stakeholders. What do you think is happening there? And let them help add value to the information as it moves from evidence to results. Health Hats: This is the solution to the funder problem. Instead of writing reports for funders, Kirk brings together the actual stakeholders—the people who provided data and benefit from the program. They assist in interpreting the findings in real-time. It’s formative, not summative. It’s immediate, not shelved. 9. No Strings Attached: Reimagining Funder Relationships Health Hats: I think it’s interesting that a thread through this is the role of the funder and the initiative’s governance. I remember that we worked on a couple of projects. I felt like the funder’s expectations were paramount, and the lessons we learned in the process were less important, which aligns with what we didn’t show. Publication bias or something. Sometimes in these initiatives, what’s most interesting is what didn’t work —and that’s not so, anyway. So how? So now that you’re looking forward to working with organizations that are trying to have questions answered, how is that shaping how you’re coaching about governance of these initiatives? Like, where does that come in? Lacy Fabian: Yeah. I think, if we’re talking about an ideal state, there are models, and it will be interesting to see how many organizations really want to consider it, but the idea of no-strings-attached funding. Doesn’t that sound nice, Kirk? The idea being that if you are the funding organization and you have the money, you have the power, you’re going to call the shots. In that way, is it really fair for you to come into an organization like something that Kirk has and start dictating the terms of that money? So, Kirk has to start jumping through the hoops of the final report and put together specific monthly send-ins for that funder. And he has to start doing these things well for that funder. What if we considered a situation where the funder even paid for support to do that for themselves? Maybe they have somebody who comes in, meets with Kirk, or just follows around, shadows the organization for a day or so, collects some information, and then reports it back. But the idea is that the burden and the onus aren’t on Kirk and his staff. Because they’re trying to repair wheelchairs and imagining the types of models we’ve shifted. We’ve also left the power with Kirk and his organization, so they know how to serve their community best. Again, we’ve put the onus back on the funder to answer their own questions that are their needs. I think that’s the part that we’re trying to tease out in the equity: who is this really serving? And if I’m giving to you, but I’m saying you have to provide me with this in return. Again, who’s that for, and is that really helping? Who needs their wheelchair service? And I think that’s the part we need to work harder at unpacking and asking ourselves. When we have these meetings, put out these funding notices, or consider donating to programs, those are the things we have to ask ourselves about and feel are part of our expectations. 10. Balancing Accountability and Flexibility Health Hats: Wow. What’s going through my mind is, I’m thinking, okay, I’m with PCORI. What do we do? We want valuable results. We do have expectations and parameters. Is there an ideal state? Those tensions are real and not going away. But there’s the question of how to structure it to maximize the value of the tension. Oh, man, I’m talking abstractly. I need help thinking about the people who are listening to this. How does somebody use this? So let’s start with: for the researcher? What’s the mindset that’s a change for the researcher? What’s the mindset shift for the people, and for the funder? Let’s start with the researcher. Either of you pick that up. What do you think a researcher needs to do differently? Kirk Knestis: I don’t mind having opinions about this. That’s a fascinating question, and I want to sort of preface what I’m getting ready to say. With this, I don’t think it’s necessary to assume that, to achieve the valuable things Lacy just described, we must completely abrogate all responsibility. I think it would be possible for someone to say, money, no strings attached. We’re never going to get the board/taxpayer/or whoever, for that. Importantly, too, is to clarify a couple of functions. I found that there are a couple of primary roles that are served by the evaluation or research of social services or health programs, for example. The first and simplest is the accountability layer. Did you do what you said you were going to do? That’s operational. That doesn’t take much time or energy, and it doesn’t place a heavy burden on program stakeholders. Put the burden on the program’s managers to track what’s happening and be accountable for what got done. Health Hats: So like milestones along the way? Kirk Knestis: Yes. But there are other ways, other dimensions to consider when we think about implementation. It’s not just the number of deliveries but also getting qualitative feedback from the folks receiving the services. So, you can say, yeah, we were on time, we had well-staffed facilities, and we provided the resources they needed. So that’s the second tier. The set of questions we have a lot more flexibility with at the next level. The so-what kind of questions, in turn, where we go from looking at this term bugs me, but I’ll use it anyway. We’re looking at outputs—delivery measures of quantities and qualities—and we start talking about outcomes: persistent changes for the stakeholders of whatever is being delivered. Attitudes, understandings. Now, for health outcomes—whatever the measures are—we have much more latitude. Focus on answering questions about how we can improve delivery quality and quantity so that folks get the most immediate and largest benefit from it. And the only way we can really do that is with a short cycle. So do it, test it, measure it, improve it. Try it again, repeat, right? So that formative feedback, developmental kind of loop, we can spend a lot of time operating there, where we generally don’t, because we get distracted by the funder who says, “I need this level of evidence that the thing works, that it scales.” Or that it demonstrates efficacy or effectiveness on a larger scale to prove it. I keep wanting to make quotas, right, to prove that it works well. How about focusing on helping it work for the people who are using it right now as a primary goal? And that can be done with no strings attached because it doesn’t require anything to be returned to the funder. It doesn’t require that deliverable. My last thought, and I’ll shut up. 11. Where the Money Actually Goes Kirk Knestis: A study ages ago, and I wish I could find it again, Lacy. It was in one of the national publications, probably 30 years ago. Health Hats: I am sure Lacy’s going to remember that. Kirk Knestis: A pie chart illustrated how funds are allocated in a typical program evaluation, with about a third going to data collection and analysis, which adds value. Another third covers indirect costs, such as keeping the organization running, computers, and related expenses. The remaining third is used to generate reports, transforming the initial data into a tangible deliverable. If you take that third use much more wisely, I think you can accomplish the kind of things Lacy’s describing without, with, and still maintain accountability. Health Hats: This is GOLD. The 1/3: 1/3: 1/3 breakdown is memorable, concrete, and makes the problem quantifiable. Once again, 1/3 each for data collection and analysis, keeping the organization alive, and writing reports. 12. The Pendulum Swings Lacy Fabian: And if I could add on to what Kirk had said, I think one of the things that comes up a lot in the human services research space where I am is this idea of the pendulum swing. It’s not as though we want to go from a space where there are a lot of expectations for the dollars, then swing over to one where there are none. That’s not the idea. Can we make sure we’re thinking about it intentionally and still providing the accountability? So, like Kirk said, it’s that pause: do we really need the reports, and do we really need the requirements that the funder has dictated that aren’t contributing to the organization’s mission? In fact, we could argue that in many cases, they’re detracting from it. Do we really need that? Or could we change those expectations, or even talk to our funder, as per the Fundee, to see how they might better use this money if they were given more freedom, not to have to submit these reports or jump through these hoops? And I believe that’s the part that restores that equity, too, because it’s not the funder coming in and dictating how things will go or how the money will be used. It’s about having a relational conversation, being intentional about what we’re asking for and how we’re using the resources and then being open to making adjustments. And sometimes it’s just that experimentation: I think of it as, we’re going to try something different this time, we’re going to see if it works. If it doesn’t work, it probably won’t be the end of the world. If it does, we’ll probably learn something that will be helpful for next time. And I think there’s a lot of value in that as well. Health Hats: Lacy’s ‘pendulum swing’ wisdom: not anarchy, but intentional. Not ‘no accountability’ but ‘accountability without burden-shifting.’ The move is from the funder dictating requirements to relational conversation. And crucially: willingness to experiment. 13. The Three Relationships: Funder, Researcher, Community Health Hats: Back to the beginning—relationships. So, in a way, we haven’t really —what we’ve talked about is the relationship with funders. Lacy Fabian: True. Health Hats: What is the relationship between researchers and the community seeking answers? We’re considering three different types of relationships. I find it interesting that people call me about their frustrations with the process, and I ask, “Have you spoken with the program officer?” Have you discussed the struggles you’re facing? Often, they haven’t or simply don’t think to. What do you think they’re paid for? They’re there to collaborate with you. What about the relationships between those seeking answers and those studying them—the communities and the researchers? How does that fit into this? Kirk Knestis: I’d like to hear from Lacy first on this one, because she’s much more tied into the community than the communities I have been in my recent practices. 14. Maintaining Agency Health Hats: I want to wrap up, and so if. Thinking about people listening to this conversation, what do you think is key that people should take away from this that’ll, in, in either of the three groups we’ve been talking about, what is a lesson that would be helpful for them to take away from this conversation? Lacy Fabian: I think that it’s important for the individual always to remember their agency. In their engagements. And so I know when I’m a person in the audience, listening to these types of things, it can feel very overwhelming again to figure out what’s enough, where to start, and how to do it without making a big mistake. I think that all of those things are valid. Most of us in our professional lives who are likely listening to this, we show up at meetings, we take notes. We’re chatting with people, engaging with professional colleagues, or connecting with the community. And I think that we can continue to be intentional with those engagements and take that reflective pause before them to think about what we’re bringing. So if we’re coming into that program with our research hat on, or with our funder hat on, what are we bringing to the table that might make it hard for the person on the other side to have an equitable conversation with us? If you’re worried about whether you’ll be able to keep your program alive and get that check, that’s not a balanced conversation. And so if you are the funder coming in, what can you do to put that at ease or acknowledge it? Suppose you are the person in the community who goes into someone’s home and sees them in a really vulnerable position, with limited access to healthcare services or the things they need. What can you do to center that person, still like in their humanity, and not just this one problem space? And that they’re just this problem because that’s, I think, where we go astray and we lose ourselves and lose our solidarity and connection. So I would just ask that people think about those moments as much as they can. Obviously, things are busy and we get caught up, but finding those moments to pause, and I think it can have that snowball effect in a good way, where it builds and we see those opportunities, and other people see it and they go, Huh, that was a neat way to do it. Maybe I’ll try that too. 15. Listen and Learn Health Hats: Thank you. Kirk. Kirk Knestis: Yeah. A hundred percent. I’m having a tough time finding anything to disagree with what Lacy is sharing. And so I’m tempted just to say, “Yeah, what Lacy said.” But I think it’s important that, in addition to owning one’s agency and taking responsibility for one’s own self, one stands up for one’s own interests. At the same time, that person has to acknowledge that everybody else knows that the three legs of that stool I described earlier have to do the same thing, right? Yeah. So, it’s about a complicated social contract among all those different groups. When the researchers talk to the program participant, they must acknowledge the value of each person’s role in the conversation. And when I, as the new nonprofit manager, am talking to funders, I’ve got to make sure I understand that I’ve got an equal obligation to stand up for my program, my stakeholders, and the ideals that are driving what I’m doing. But at the same time, similarly, respecting the commitment obligation that the funder has made. Because it never stops. The web gets bigger and bigger, right? I had a lovely conversation with a development professional at a community foundation today. And they helped me remember that they are reflecting the interests and wishes of different donor groups or individuals, and there’s got to be a lot of back-and-forth at the end of the day. I keep coming back to communication and just the importance of being able to say, okay, we’re talking about, in our case, mobility. That means this. Are we clear? Everybody’s on the same page. Okay, good. Why is that important? We think that if that gets better, these things will, too. Oh, have you thought about this thing over here? Yeah, but that’s not really our deal, right? So having those conversations so that everybody is using the same lingo and pulling in the same direction, I think, could have a significant effect on all of those relationships. Health Hats: Here’s my list from the listening agency, fear, mistake, tolerance, grace, continual Learning, communication, transparency. Kirk Knestis: and equal dollops of tolerance for ambiguity and distrust of ambiguity. Yes, there you go. I think that’s a pretty good list, Danny. Lacy Fabian: It’s a good list to live by. Health Hats: Thank you. I appreciate this. Reflection Everyone in a relationship faces power dynamics – who's in control and who's not? These dynamics affect trust and the relationship’s overall value, and they can shift from moment to moment. Changing dynamics takes mindfulness and intention. The community wanting answers, the researcher seeking evidence-based answers, and those funding the studies, have a complex relationship. Before this conversation, I focused on the community-research partnership, forgetting it was a triad, not a dyad. The Central Paradox: We have exponentially more information at our disposal for research, yet we’re becoming more disconnected. Lacy identifies this as the core problem: we’ve stopped seeing each other as human beings and lost the touchpoints that enable genuine collaboration—when connection matters most. This is true for any relationship. The Hidden Cost Structure Kirk’s 1/3:1/3:1/3 breakdown is golden—one-third for data collection and analysis (adds value), one-third for organizational operations, and one-third for reports (mostly shelf-ware). The key takeaway: we’re allocating one-third of resources to deliverables that don’t directly benefit the people we’re trying to help. Perhaps more of the pie could be spent on sharing and using results. Three Different “Utilities” Are Competing Kirk explains what most evaluation frameworks hide: funder utility (accountability), research utility (understanding models), and community utility (immediate benefit) are fundamentally different. Until you specify which one you’re serving, you’re likely to disappoint two of the three audiences. Data Parties Solve the Funder Problem Pragmatically. Rather than choosing between accountability and flexibility, data parties and face-to-face analysis let stakeholders interpret findings in real time – the data party. I love that visual. It’s formative, not summative. It’s relational, not transactional. The Funding Question Reverses the Power Dynamic. Currently, funders place the burden of proving impact on programs through monthly reports and compliance documentation. Lacy’s alternative is simpler: what if the funder hired someone to observe the program, gather the information, and report back? This allows the program to stay focused on its mission while the funder gains the accountability they need. But the structure shifts—the program no longer reports to the funder; instead, the funder learns from the program. That’s the difference between equity as a theory and equity as built-in. Related episodes from Health Hats Artificial Intelligence in Podcast Production Health Hats, the Podcast, utilizes AI tools for production tasks such as editing, transcription, and content suggestions. While AI assists with various aspects, including image creation, most AI suggestions are modified. All creative decisions remain my own, with AI sources referenced as usual. Questions are welcome. Creative Commons Licensing CC BY-NC-SA This license enables reusers to distribute, remix, adapt, and build upon the material in any medium or format for noncommercial purposes only, and only so long as attribution is given to the creator. If you remix, adapt, or build upon the material, you must license the modified material under identical terms. CC BY-NC-SA includes the following elements:    BY: credit must be given to the creator.   NC: Only noncommercial uses of the work are permitted.    SA: Adaptations must be shared under the same terms. Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines. Disclaimer The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors, or Methodology Committee. Danny van Leeuwen (Health Hats)

GenAI as Therapist A New York Times op-ed explores how people are using ChatGPT for therapeutic conversations and emotional processing, raising questions about whether AI companions represent innovative digital self-care or a concerning workaround for unmet mental health needs.USA's "Make HealthTech Great Again" Pledge The White House hosted a summit with 60+ tech companies to sign a HealthTech Ecosystem pledge promoting data interoperability and AI in healthcare, though questions remain about whether this represents genuine reform or just encourages data sharing with private platforms while healthcare infrastructure gets decimated.Australia Gets Tough on De-Identification Australia's Privacy Commissioner issued new guidance clarifying that supposedly "de-identified" health data used for AI training may still qualify as personal information, potentially ending the era of inadequately anonymised data sharing and pushing the industry toward synthetic data or on-premise learning.OpenAI's Kenya Study: Clinical Copilot in Action OpenAI's real-world study with Penda Health in Kenya showed their GPT-4o clinical copilot reduced diagnostic errors by 16% and treatment errors by 13% across 40,000 patient visits, demonstrating measurable improvements when AI is properly integrated into clinical workflows.George and Louise chat with Dr Danny Sands - Pioneer of participatory medicine, discusses the origins of the e-patient movement and participatory medicine, from early email communication with patients and exploring how to maintain human connection while embracing technological advancementConnect with Danny on LinkedInResources:NY Times I'm a Therapist. ChatGPT Is Eerily Effective LinkAustralian Privacy Commissioner ruling LinkSands (2025) From Internet to Artificial Intelligence (Al) Bots: Symbiotic Evolutions of Digital Technologies and e-Patients LinkShout outs to: Liz Salmi, ePatientDave, Danny Sands, Ian Opperman, Gavin Andrews, Dr Amit Thacker Africa Health BusinessVisit Pulse+IT.news to 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 BlueSky Louise | George | Pulse+ITSend us your questions pulsepod@pulseit.newsProduction by Octopod Productions | Ivan Juric

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

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/

Hosts Craig Joseph, MD, and Jerome Pagani, PhD, invite UCHealth CMIO CT Lin, MD, Director of Communications and Patient Initiatives at OpenNotes Liz Salmi, and postdoctoral research fellow at the Vanderbilt Clinical Informatics Center Bryan Steitz, PhD. They discuss their recent study regarding patient attitudes and perspectives related to immediate viewing of test results via the online patient portal. Stay tuned for a special musical performance from one of our guests. This conversation was recorded live at the 2023 Nordic Summer Social in Madison, WI. Find all of our network podcasts on your favorite podcast platforms and be sure to subscribe and like us. Learn more at www.healthcarenowradio.com/listen

Two weeks ago on the GeriPal podcast we talked about why and how to write for the general public.  This week we've invited three guests to share their stories about storytelling that's written for healthcare providers. The first guest is Liz Salmi.  Liz wrote a fabulous perspectives piece in the NEJM titled “Deciding on My Dimples” which talks about her experience as a patient doing shared decision making during neurosurgery for resection of an astrocytoma.   In addition to this being a fascinating story, Liz brings in a great perspective as a patient, advocate, researcher, and a punk rocker. Our second guest is a recurring star of GeriPal, Anne Kelly.  She just published an essay for JAMA Piece of My Mind titled “The Last Visit”.  In this piece Anne describes her experience with the expressions of love she and her mother shared in the last days of her mothers life. Lastly, but certainly not least, we've invited Preeti Malani.  Preeti is the editor for JAMA's Piece of My Mind section.  We've asked Preeti to come on to describe what happens behind the curtain when evaluating these stories, including what makes those few that get accepted stand out. We've also love to hear from you on twitter and facebook your own experiences writing for the medical world (and please include links!)

Patients, care partners & clinicians can reduce record errors with collaborative notes. Dr. Peter Elias shares his note-writing with collaborative partners. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Peter Elias 01:41. 2 Medical documentation over the years 02:42. 2 Records go from paper to electronic 05:55. 3 Copies of doctors' notes to patients, sometimes 7:16. 3 Always 10:28. 4 Patients feel reassured 11:21. 4 Care planning and collaborative notes 12:20. 4 Challenging conversations 12:46. 4 Families, records, getting it right 14:00. 5 Using a scribe to assist with documentation 15:16. 5 Misdiagnosis and long-standing error 16:24. 5 Preserving data, accurate data, workarounds 18:02. 6 Insurance companies 20:24. 6 Open Notes, relationships with clinicians 21:27. 6 Not at your best at the doctor's office 22:13. 6 Getting the most out of it 24:10. 7 Coaching other docs 25:04. 7 Emerging issues 26:40. 8 For other clinicians 27:36. 8 Reflection 29:12. 9 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Liz Salmi, Tom Delbanco, Danny Sands, Janice Tufte, Alexis Snyder, Jan Oldenburg, Virginia Lorenzi Links Society for Participatory Medicine How accurate is the medical record? A comparison of the physician's note with a concealed audio recording in unannounced standardized patient encounters in the Journal of Informatics in Health and Biomedicine How to Correct Errors in Your Medical Records Correcting Errors In the Electronic Medical Record Impact of Electronic Health Record Systems on Information Integrity: Quality and Safety Implications Beat cancer? Your Medicare Advantage plan might still be billing for it. Related podcasts https://health-hats.com/pod168/ https://health-hats.com/opennotes-a-gold-mine-of-community-organizing/ https://health-hats.com/misdiagnosis-how-can-patients-help-doctors/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare.  Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website).

How can medical document errors become easy to fix, everywhere the error lives, & fit in the workflow? Virginia Lorenzi and HL7's Patient Empowerment Workgroup. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Virginia Lorenzi 03:31. 2 HL7's Patient Empowerment Workgroup 04:56. 2 An intelligent customer understands some of the technical 05:45. 2 Requests for corrections – a sign of engagement 07:12. 3 Fixing errors - from the fifties 08:01. 3 Patient satisfaction and errors 09:30. 4 Release more information, find more errors, feel worse 10:07. 4 Burden on clinicians, burden on patients 11:42. 4 What if you could push a button and start and track the correction process 12:12. 4 Connectathons – a meeting of the minds in a sandbox 13:17. 5 Making decisions about data standards 15:32. 5 Eureka, we have standards. Now, who's going to use them? How easy can we make it? 18:41. 6 An error is not an error, is not an error 21:11. 7 Ink on paper 24:07. 7 HIPAA-federal rules about requirements to correct errors 26:38. 8 Misdiagnosis – Out damn spot! 28:54. 9 Impact of errors 32:07. 10 Motivation to fix errors 33:50. 10 Reflection 38:44  12 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Cohelo as originally played by Mandrill, here played by Lechuga Fresca Latin Band, Danny van Leeuwen soloing on Baritone Sax Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Liz Salmi, Tom Delbanco, Peter Elias, Grace Cordovana, Dave DeBronkart, Debi Willis, Laura Marcial, Bryn Rhodes Links How accurate is the medical record? A comparison of the physician's note with a concealed audio recording in unannounced standardized patient encounters in the Journal of Informatics in Health and Biomedicine the Patient Empowerment Workgroup HIPAA, you have a right to get your record fixed HIPAA rule says that if a record is amended or if a record amendment the 21st Century Cures Act. the Patient Requests for Corrections FHIR Implementation Guide United States Core Data Set for Interoperability. How to Correct Errors in Your Medical Records Correcting Errors In the Electronic Medical Record Impact of Electronic Health Record Systems on Information Integrity: Quality and Safety Implications IHE Connectathon: A Unique Testing Opportunity Late addition: Beat cancer? Your Medicare Advantage plan might still be billing for it. Related podcasts https://health-hats.com/pod158/ https://health-hats.com/opennotes-a-gold-mine-of-community-organizing/ https://health-hats.com/misdiagnosis-how-can-patients-help-doctors/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very...

US worse in maternal mortality among rich nations. Black women 2.5x more likely to die than white women. Drs. Whitt & Masinter discuss fragmented care and info. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Drs. Whitt and Masinter 04:58. 2 Disparities in access to outpatient maternal health 07:08. 3 Transitions of Care and outcomes in maternal healthcare 13:37. 4 A long-known, worsening, unsolved problem 17:26. 5 Pushing up regulations and financial incentives hills 24:51. 7 Clinicians that look like you 25:36. 7 Research what we know or study potential solutions? 27:12. 7 Low-hanging fruit gone 29:50. 8 Hyper-local solutions 31:40. 9 Holes in our data, gaps in our knowledge 33:49. 9 How can we, mere mortals, participate? 37:38. 10 Wave your magic wand and do what? 40:23. 11 Health Information Exchanges HIEs 41:39. 11 Integrating public health/community resource use 43:36. 12 Reflection 47:24  13 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Web/social media coach, Kayla Nelson Inspiration from Julia Skapik, Lillie Rizack, Maria Michaels, Ellen Schultz, Linda DeRosa, Anica Madeo, Bevin Croft, Bonnie Englebart, Liz Salmi, Regina Holliday, Jane Sarasohn-Kahn, Ame Sanders Sponsored by Abridge Links CDC Maternal Mortality Federally Qualified Health Centers OCHIN, the Oregon Community Health Information Network. Alliance Chicago, advancing community health through collaboration, technology, and research Health Populi What Poor Birth and Maternity Outcomes in the U.S. Say About American Healthcare & “Infrastructure” United States core data for interoperability United States Core Data for Interoperability (USCDI) The United States Core Data for Interoperability (USCDI) is a standardized set of health data classes and constituent data elements for nationwide, interoperable health information exchange. Review the USCDI Fact Sheet to learn more. Adams Announces MOMS Act and Maternal CARE Act to Conclude Black Maternal Health Week The MOMS Act would expand the Alliance for Innovation on Maternal Health (AIM) program, which develops standardized maternal safety best practices to prevent maternal mortality and morbidity and would establish a new grant program to provide states and hospitals with the resources and training needed to implement the best practices to prevent maternal death and complications before, during, and after childbirth. AMERICA IS FAILING ITS BLACK MOTHERS from the Harvard Chan School Business Model Innovation for Inclusive Health Care Delivery at the Bottom of the Pyramid This article investigates business models innovation for delivering health care at the base of the pyramid (BoP). The examination of six health care organizational cases suggests that co-creation of patient needs, community engagement, continuous involvement of customers, innovative medical technology, focus on human resources for health, strategic partnerships, economies of scale, and cross-subsidization are business model innovation strategies that enable inclusive health care delivery. Based on these findings, we propose a four-dimensional framework. A process of value discovery, leading BoP patients and communities to recognize a health need and seek for an acceptable treatment, precedes the identification of a successful value proposit...

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

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.

I’ve never said the words “Cancer Nerd and Google Scholar” in succession before, but that only partially describes the epicness of my guest today, one Liz Salmi — self-proclaimed “Citizen Scientist” and “Professional Medical Nerd.” — and I attest that both of these are appropriate, accurate and deserved. Diagnosed with brain cancer at 29 and forced down a rabbit hole of a whole bunch of other horrible shit, Liz became the accidental advocate we needed when the Interweb was just becoming the Internet, and when the online support communities we often take for granted barely existed. Her self-made background in digital communications came in very handy when she realized her higher purpose in becoming a human Babelfish capable of helping clinicians and academics speak “patient” in understandable layperson language. She is also a co-founder of the #BTSM community on Twitter, inspired by the patients and researchers who had come together for the #BCSM tweet chats in 2011. She’s a force, the hero nerd we deserve, and, man, does she love her patient portals (said no one ever but her). Join me in also celebrating her 12th brain cancerversay and enjoy the show.

Transparent communication in healthcare. Connection, trust, control. Research to practice. Change management. Community organizing. Liz Salmi tells her story. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Introducing Liz Salmi 00:59. 1 From brain tumor to OpenNotes 04:12. 2 Moving mountains - from dissemination to implementation 05:52. 2 Change management champions 10:40. 3 Community organizing – handwashing to OpenNotes 12:43. 4 Unintended consequences of OpenNotes 16:51. 5 SOAP notes, digital notes for patients. What’s next? 19:30. 5 OpenNotes highlights errors. Fixing errors. 25:46. 7 OpenNotes and mental health/substance use records 31:07. 8 The kitchen sink of OpenNotes 33:38. 8 Reflection 38:45. 10 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Photo by Miguel A. Amutio on Unsplash Photo by Manny Becerra on Unsplash Photo by Halacious on Unsplash Sponsored by Abridge Thanks to these fine people who inspired me for this episode: Geri Lynn Baumblatt, Penney Cowan, Freddie White-Johnson, Morgan Gleason, Mike Links OpenNotes PCORI ethos model of patients and care partners involved The “OurNotes” research project: https://www.opennotes.org/ournotes-health-professionals/ This work is by Dr. Sigall Bell. She's our leader in patient safety work and OpenNotes Impacts of a web-based educational program for veterans who read their mental health notes online Early results: OurNotes & telemedicine during COVID: https://catalyst.nejm.org/doi/pdf/10.1056/CAT.20.0154 

Transparent communication in healthcare. Connection, trust, control. Research to practice. Change management. Community organizing. Liz Salmi tells her story about OpenNotes. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Introducing Liz Salmi 00:59. 1 From brain tumor to OpenNotes 04:12. 2 Moving mountains - from dissemination to implementation 05:52. 2 Change management champions 10:40. 3 Community organizing – handwashing to OpenNotes 12:43. 4 Unintended consequences of OpenNotes 16:51. 5 SOAP notes, digital notes for patients. What's next? 19:30. 5 OpenNotes highlights errors. Fixing errors. 25:46. 7 OpenNotes and mental health/substance use records 31:07. 8 The kitchen sink of OpenNotes 33:38. 8 Reflection 38:45. 10 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Photo by Miguel A. Amutio on Unsplash Photo by Manny Becerra on Unsplash Photo by Halacious on Unsplash Sponsored by Abridge Thanks to these fine people who inspired me for this episode: Geri Lynn Baumblatt, Penney Cowan, Freddie White-Johnson, Morgan Gleason, Mike Mittelman, Alexis Snyder, Teresa Wright-Johnson, Mary Anne Sterling, Casey Quinlan Links OpenNotes PCORI ethos model of patients and care partners involved The “OurNotes” research project: https://www.opennotes.org/ournotes-health-professionals/ This work is by Dr. Sigall Bell. She's our leader in patient safety work and OpenNotes Impacts of a web-based educational program for veterans who read their mental health notes online Early results: OurNotes & telemedicine during COVID: https://catalyst.nejm.org/doi/pdf/10.1056/CAT.20.0154 

Healthcare activists need communities to affect change. Considering public-private partnership with NCQA's Digital Measurement Community with Ben Hamlin. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem 00:53. 1 Introducing Ben Hamlin 05:18. 2 The disrupter 06:53. 2 Looking in the rear-view mirror 09:19. 3 Mutual benefit 14:49. 4 Data management tools to understand people 16:36. 4 NCQA collaboration 19:40. 5 A collaborative space 24:30. 6 Patient voices – mutual benefits 27:32. 7 What’s the pitch? 30:23. 8 Learning what works 33:19. 8 Reflection 36:38  9 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Sponsored by Abridge Photo by Stanislav Filipov on Unsplash Thanks to these fine people who inspired me for this episode: Laura Marcial, Neely Williams, Liz Salmi, Mary Sue Schottenfels, Ellen Schultz, Andrea Downing Links Digital Community https://www.ncqa.org/digital-measures/ Electronic Phenotyping Some great books on social responsibility and ethics in the world of big data    1) How we Became our Data    2) Algorithmic Governance: Politics and Law in the Post-Human Era A Transformation in Health IT Interoperability: Moving to a Person-Centered Focus (Stewards of Change: National Interoperability Council)  Is It Time for a Patient-Centered Quality Measure of Asthma Control?  COVID-19 Underscores The Need For Digital Quality Measurement National Committee for Quality Assurance (NCQA) Healthcare Effectiveness Data and Information Set (HEDIS)  National Academy of Medicine COVID knowledge accelerator projects CMS CQM program Related podcasts and blogs https://www.health-hats.com/person-first-safe-living-in-a-pandemic-1/ https://www.health-hats.com/minister-to-community-spirit/ https://www.health-hats.com/healthy-homes-advocacy-podcast-002/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. To subscribe go to https://www.health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Activists seek to inform and nudge change for the better – political, social, cultural, healthcare, service change. I’m a patient-caregiver activist learning and sharing what works to make safe health choices and decisions, now in these times of a pandemic. Activism involves groups of people, communities – few to no changes arise from a single pe...

Healthcare activists need communities to affect change. Considering public-private partnership with NCQA's Digital Measurement Community with Ben Hamlin. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem 00:53. 1 Introducing Ben Hamlin 05:18. 2 The disrupter 06:53. 2 Looking in the rear-view mirror 09:19. 3 Mutual benefit 14:49. 4 Data management tools to understand people 16:36. 4 NCQA collaboration 19:40. 5 A collaborative space 24:30. 6 Patient voices – mutual benefits 27:32. 7 What's the pitch? 30:23. 8 Learning what works 33:19. 8 Reflection 36:38  9 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Sponsored by Abridge Photo by Stanislav Filipov on Unsplash Thanks to these fine people who inspired me for this episode: Laura Marcial, Neely Williams, Liz Salmi, Mary Sue Schottenfels, Ellen Schultz, Andrea Downing Links Digital Community https://www.ncqa.org/digital-measures/ Electronic Phenotyping Some great books on social responsibility and ethics in the world of big data    1) How we Became our Data    2) Algorithmic Governance: Politics and Law in the Post-Human Era A Transformation in Health IT Interoperability: Moving to a Person-Centered Focus (Stewards of Change: National Interoperability Council)  Is It Time for a Patient-Centered Quality Measure of Asthma Control?  COVID-19 Underscores The Need For Digital Quality Measurement National Committee for Quality Assurance (NCQA) Healthcare Effectiveness Data and Information Set (HEDIS)  National Academy of Medicine COVID knowledge accelerator projects CMS CQM program Related podcasts and blogs https://health-hats.com/person-first-safe-living-in-a-pandemic-1/ https://health-hats.com/minister-to-community-spirit/ https://health-hats.com/healthy-homes-advocacy-podcast-002/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Activists seek to inform and nudge change for the better – political, social, cultural, healthcare, service change. I'm a patient-caregiver activist learning and sharing what works to make safe health choices and decisions, now in these times of a pandemic. Activism involves groups of people, communities – few to no changes arise from a single person.

Soon after Liz had a seizure at work, she was diagnosed with a brain tumor. In her personal blog, she started posting about what she was experiencing, with an unexpected consequence: people all over the world started sharing stories like hers. Soon, Liz’s blog, “The Liz Army” became a a place to share experiences, fears, … Continue reading The Liz Army: How a personal Blog became a Strong Patient Community (with Liz Salmi) →

This week, I interviewed Cait DesRoches and Liz Salmi from OpenNotes, an international movement to make health care more transparent. Liz shared her personal journey through the medical system and Cait shared the mission and research behind OpenNotes. They both discussed what they would like to see happen in health care and provided tangible tips for our listeners. You can find more info at opennotes.org and you can follow Liz on Twitter @TheLizArmy and Cait @cmd418. 

This week, we look at three MRIs with four different price tags, and an enormous range. Liz Salmi and a view of her brain. (Photo: Kaiser Health News)The first two price tags come from listener Liz Salmi, who has been living with brain cancer for more than a decade.Liz gets MRI scans twice a year, to make sure the cancer isn’t growing. A couple years ago, Liz changed insurance, changed providers… and got serious sticker-shock when she saw the bill for a scan: $1,600 — AFTER insurance.So when she needed a follow-up scan, she shopped around — and found an option that set her back less than 90 bucks.Which is great news, and useful — as far as it goes: As Liz points out, not everybody has six months to shop around.But Liz’s experience isn’t even the craziest MRI-price-tag story we look at this week. Stick around for that.Coming in to bat cleanup — to help us understand why these prices are so crazy, and so variable — is journalistic super-star, friend of the show, and my new colleague:Elisabeth Rosenthal, editor-in-chief of Kaiser Health News and author of An American Sickness: How Healthcare Became Big Business and How You Can Take It Back. She breaks it down in an authoritative, funny, clear-as-glass way.(Reminder: Kaiser Health News — our co-producers for this season — is not affiliated with the health care provider Kaiser Permanente. It’s a great story, and we’ve got it for you right here.)This is the first of three episodes where we look at where health care prices come from. So this week it’s MRIs.Next up: Prescription drugs. And then: Insulin. Yep, we are going there. See acast.com/privacy for privacy and opt-out information.

Today's Guests: Cait DesRoches, DrPH | Executive Director, Open NotesLiz Salmi | Senior Strategist, Outreach and Communications, Open Notes Greg, Cait and Liz talk about why it's important for patients to have access to the physician notes in their electronic medical record - and what happens when they get that access. Is YOUR doctor a part of the Open Notes movement? Important Links: OpenNotes Web Site: https://www.opennotes.org/ Cait's LinkedIn: https://www.linkedin.com/in/catherine-desroches-41137137/ Cait's Twitter: https://twitter.com/cmd418 Liz' LinkedIn: https://www.linkedin.com/in/lizsalmi/ Liz' Twitter: https://twitter.com/thelizarmy Research: "Patients Reading Visit Notes Report Striking Benefit Over Time" https://www.opennotes.org/news/patients-reading-visit-notes-report-striking-benefit-over-time/ 

In this episode of HealthChangers, presented by Cambia, we bring part two of our panel discussion that brought together multiple perspectives on the topic of where – and how – technology meets health equity. Led by Cambia Health Foundation president and board chair, Peggy Maguire, and Catherine DesRoches, Executive Director of OpenNotes, this panel welcomes Dr. Joann Elmore, a professor at the David Geffen School of Medicine at UCLA, Peggy Evans from Neighborcare Health, Josh Lemieux from OCHIN, Liz Salmi, Senior Strategist Outreach and Communications Director for OpenNotes andNancy Vukovic, Cambia Director of Consumer Experience.

What I did After a Brain Cancer Diagnosis - Liz Salmi Most everyone will encounter a difficult diagnosis or significant obstacles in life and this interview with Liz Salmi displays a positive way to adapt despite significant struggles. Salmi joins us to tell her story of living with a brain cancer diagnosis. Salmi not only tells her story, she also talks about how to be productive after a significant change in life, in her case, Salmi is now a prolific researcher in the realm of brain cancer patient advocacy and bettering the communication between patients and healthcare professionals. She also researches what’s it like to die from brain cancer. Salmi is relatively fearless in these realms. Salmi’s path to success is unorthodox compared to what one might believe is required to reach Salmi’s level. Salmi went from patient and amateur to patient and expert within her realm. Salmi’s story and advice aren't limited to just a cancer diagnosis. Salmi’s story shows us that when you’re living with something difficult, you can adapt and find ways to improve your position and impact the lives of others in a positive manner. In Salmi’s words from her website (linked below), "I began blogging about my brain cancer experience immediately after my first symptom: a grand mal seizure originating in the left parietal lobe. After brain surgery in September 2008, I was diagnosed with a WHO Grade II astrocytoma, a slow-growing brain cancer that has a high rate of recurrence. And recur it did! I had another brain surgery in February 2009, and underwent a whirlwind of treatment over the next two years. So much has changed since my first blog post in July 2008, most notably, how patients are using the Internet to connect with each other and with healthcare professionals. Patients are also becoming more savvy about using the Internet to gain a deeper understanding of their own diagnoses, using it as a tool in medical decision-making. There is a word now for patients who are enabled, empowered and engaged in their own health care: e-Patients. Heck, it’s more than a word–it’s a movement. Today I speak regularly on how healthcare professionals and patients are connecting through digital media, and how patients are able to make better informed medical decisions." Liz Salmi is found on social media and her website below, https://thelizarmy.com https://twitter.com/TheLizArmy/media https://www.facebook.com/lizarmy https://www.instagram.com/thelizarmy What I did After a Brain Cancer Diagnosis - Liz Salmi - 027 This episode is brought to you by Living Adaptive with Scott Davidson. Find Living Adaptive at, www.livingadaptive.com for more information. Instagram: https://www.instagram.com/living_adaptive/ Facebook: https://www.facebook.com/livingadaptive/  

Jay takes the show on the road for the Innovation Learning Network's InPerson Meeting (absolutely not a conference) in Sacramento, California, hosted by The Shop at VSP.  He first talks on-site with ILN Executive Director Chris McCarthy and Christine Folck, Manager & Leader of Operational Strategy at VSP Global to set the stage for the meeting.  Then he talks with Jay Sales, Co-Director, VSP Global and Keynote Speaker Chef Patrick Mulvaney about the local mental health issue that ILNers rolled up their sleeves to address.  Once safely home and free of jet lag, Jay joins Ben in the Sherpa studio to recap this unique event that has hopefully left its mark on Sacramento in a big, meaningful way.Twitter:  @ILNmuse #ILN18 @VSPVisionCare @McCarthyChris @ChangeAsUsual @soupsales @MulvaneysBL @JayGerhart @TheBenReport #InnovationEngine https://www.iln.org/cpages/homehttps://vspglobal.com/cms/about-us/innovation.htmlBe inspired by Liz Salmi:https://thelizarmy.com/Twitter: @TheLizArmyWhat's that pink sock reference all about?  https://pinksocks.life/Twitter:  #pinksocks Support the show

Quality Talks 2018 sneaked up on us quickly—it’s just a few weeks away! And here’s a “sneak” peek at one of our electrifying Quality Talks speakers, Liz Salmi. Unlike a lot of our speakers, who knew right away they wanted to be involved in medicine, Liz followed a different path. You could say that getting sick sparked her interest in health care: She has been living with brain cancer for 10 years. Straight out of high school, Liz went on cross-country as a drummer in a punk rock band. And after the tour, she channeled her creativity into a career in graphic design. But at 29, Liz’s life was upended when she was diagnosed with a brain tumor. As a coping mechanism, Liz drew on her creativity and began writing a blog—The Liz Army—that walked readers through her experiences as a cancer patient. When her health insurance required a change in health systems, her doctors said goodbye and handed her a DVD of her medical records. They totaled 4,800 pages. Liz’s initial reaction? “Oh my gosh, what is this?” Then she began reading. That was the start of a new relationship with OpenNotes, and Liz’s mission to bridge what she calls a “knowledge gap” between physicians and patients. Open Notes lets patients read the notes a doctor makes during a visit. In the Open Notes trial, researchers followed 105 primary care doctors who agreed to share notes with about 13,000 patients. At the end of the trial, patients showed a better understanding of their condition and reported that they felt more comfortable talking to their doctors. The patients were asked if they wanted to opt out of Open Notes. None did. Liz says the Open Notes approach provides transparency (one of NCQA’s favorite words!) in the health care system. If patients can read their doctors’ notes, they can notice errors and get them corrected. This benefits the patient, the doctor—and health care. Thanks to Open Notes, 22 million patients have access to their doctors’ notes. Amazing, right? Yes, but there’s a way to go: 22 million people is only 6% of the American population. Traditionally, most doctors and health care systems don’t share notes—and many patients don’t even know they exist. Watch More In-Depth Interviews With Our Speakers Want to learn more about Liz Salmi? Listen to NCQA’s Director of Communications, Matt Brock, interview her in our Inside Health Care podcast. You’ll find it in the Itunes app store and on Google Play. We think you’ll find her as fascinating as we do. Let us know what you think! Want to Join Us at Quality Talks? Tickets to Quality Talks are going fast. Don’t miss out on your chance to hear unique and influential speakers like Liz Salmi. Register now.

Quality Talks 2018 sneaked up on us quickly—it’s just a few weeks away! And here’s a “sneak” peek at one of our electrifying Quality Talks speakers, Liz Salmi. Unlike a lot of our speakers, who knew right away they wanted to be involved in medicine, Liz followed a different path. You could say that getting […]

[music] ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer. 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. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses. In today’s podcast, Dr. Timothy Gilligan and Liz Salmi will discuss their article “Patient-Clinician Communication Is a Joint Creation: Working Together Toward Well-Being,” from the 2018 ASCO Educational Book. They cover several ways people with cancer and members of their health care team can work together in order to improve their communication, including a study on sharing clinical notes with patients, a recent guideline from ASCO on physician-patient communication, ways to address religion and spirituality, and tips for patients. Dr. Gilligan is an Associate Professor and Medical Oncologist at the Cleveland Clinic Taussig Cancer Center. Ms. Salmi is a brain tumor survivor, and Senior Strategist in Outreach and Communications for OpenNotes. Published annually, the Educational Book is a collection of articles written by ASCO Annual Meeting speakers and oncology experts. Each volume highlights the most compelling research and developments across the multidisciplinary fields of oncology. ASCO would like to thank Dr. Gilligan and Ms. Salmi for discussing this topic. Dr. Gilligan: Hello, my name is Dr. Timothy Gilligan from the Cleveland Clinic. I'm joined today by Liz Salmi of OpenNotes and the Beth Israel Deaconess Medical Center. In this podcast, we will be sharing some key points from our 2018 ASCO Educational Book article titled “Patient-Clinician Communication Is a Joint Creation: Working Together Toward Well-Being.” I would also note that Dr. Andrea Enzinger from Dana-Farber was an author on that. So, Liz, we were going to start with talking about your piece on this, your work with OpenNotes. And for those who haven't heard of this, the idea is making progress notes openly available to patients so they can read the progress notes about their medical care. Can you talk a little bit more about what OpenNotes is and what's at stake here? Liz Salmi: Sure. Absolutely. Thanks for that intro. And I just want to say my role at OpenNotes—I do outreach and communication work, but, also, I think it's important for the audience to know that I am also a patient. I'm a person living with a malignant brain tumor or brain cancer. And I'm now a 10-year survivor, but I'm still living with active disease. So what I'm talking about today is not just part of my job, but it's also very personal to me. And so what you just kind of gave me a lead-in on, is explaining what OpenNotes is, but I do want to repeat a little bit about that. So OpenNotes is now a national movement that stems from real medical research, and it's a movement dedicated to making healthcare more open and transparent by giving people—or patients—access to their doctors' notes via existing secure online patient portals. And when I say that, I want to make it clear that OpenNotes is not a product, or it's not a piece of software. It's more of just a concept of let's give patients full access to their medical records. And when we talk about OpenNotes, a lot of patients will say, "Well, what is a doctor's note?" Right now, I, as a person, can login to my digital online portal to email with my doctor, or, say, set up appointments, or order prescription refills. And sometimes, after a visit I can see a visit summary of a little bit of what transpired at my visit with my doctor. But what I don't see is my clinical notes. Now, clinical notes, a lot of people and patients don't realize that after every clinical visit with a doctor, they go back to their office and write up these really detailed notes of everything that transpired during the visit. But most patients, about 93% of the US population, don't have access to this information. And it's a bummer because that information is so detailed. And as a person living with cancer, I'm kind of dealing with something that's emotional and overwhelming, and most people can't remember everything that their doctor says. And most doctors keep track of all of this in their clinical notes. And OpenNotes, as a research project, was looking into what would happen if we gave people or patients easy access to those clinical notes that the doctors write. Would they understand those notes? Would they get some sort of benefit or value out of it? What would doctors think about that? And so I want to talk about what that original study is, and I'll hopefully try to do it quickly. But OpenNotes started as this research project. It was conducted in 2010, the first project, and it has now been replicated at multiple sites around the country. The original research was done with over 100 primary care doctors and 20,000 patients. And we tested this concept of sharing notes at 3 sites, at the Beth Israel Deaconess Medical Center in Boston, at Geisinger Health in Pennsylvania, and at Harborview Medical Center in Seattle. And at the beginning of the project, they asked all the clinicians who'd be sharing their notes, "What do you think's going to happen?" And the doctors thought, "Gosh, we write these notes at such a high level because it's a communications tool with our other colleagues. And we don't think our patients are going to really understand what we're writing. And we're also concerned that patients might be afraid of what they read because there's all kinds of stuff we capture in there." And they also surveyed those patients. Before they received their notes, they surveyed them and said, "What do you think's going to happen? You're going to now read your notes for the next year. What do you think?" And patients, even people like me, were like, "I don't know what to expect. I've never seen this type of information before." So fast-forward to a year later, and what they found was that during that year about 80% of patients read a note, and 75% of patients reported benefits. They felt like, "Wow, if I can read my doctor's notes, I feel more engaged in my care. I better understand why certain medications were prescribed to me. I felt like I had more control over my care." Sharing the notes improved the doctor-patient relationship. 99% of patients felt better or the same after reading just one of their doctor's notes. They felt they could trust their doctors more. And, just like regular people, sometimes doctors make mistakes. And sometimes those mistakes would transfer to their clinical notes, and patients, when they're reading those notes, were able to point out errors. For example, the doctor might write, "There's a problem with your left knee." And the patient will say, "Actually, I was talking about my right knee." So there was this opportunity for a little bit of quality control. Dr. Gilligan: Well, thank you. So you've outlined, obviously, some of the benefits to patients in terms of direct access to information, the opportunity to correct mistakes, the chance to feel more empowered. I'm curious. Often, we hear from clinicians fears that this is going to generate a lot more phone calls or problems, or patients will get upset. Can you talk just a little bit more about what the research has shown in terms of what has actually happened when this has been turned on, so to speak? Liz Salmi: Absolutely. So we've learned a lot. They're concerned that by sharing their notes, it's going to increase that doctor or other clinician's workflow, meaning if a patient reads a note and anything about it is unclear, or maybe there's a word and phrase they don't know, it's going to trigger an email or a phone call back to the doctor. So mainly, the concern is workflow. And we've seen—and it continues to show—that workflow does not increase. W hy is that? Well, often, a patient will go to a visit, leave that doctor's visit, and then later go, "Oh, my gosh. I can't remember what my doctor said." If they don't have access to their notes, that triggers an email or maybe a phone call saying, "Oh, hey, Doc. I can't remember. Did you tell me to do this or that?" or, "How many times am I supposed to take this medication?" or, "How many exercises do I need to do each week?" or, "What was that thing you said?" With OpenNotes, patients can actually go back to the doctor's notes, the exact record of that interaction, and refer to the note itself. So that decreases the need for another email or another phone call. Occasionally, a patient might read a note and have a question that the note triggers. So then they might follow up with a question through email or a phone call. So the 2 kind of cancel each other out, and, overall, you don't see an increase in workflow. Also, they’re worries that most doctors have in advance of sharing notes. "Oh, my gosh.  I think my patient is going to read what I write, and they're going to get stressed out by it." But that never happens. And what is written in a medical record and in a note is what the doctor actually says to the patient. So there shouldn't be any new information, necessarily, in the note. An interesting thing to think about is that after that original study, all the doctors who shared their notes after that entire year were allowed to stop sharing their notes, but not a single 1 did. They were like, "Oh. This is working out for me. My patients seem to like it. So I'll keep going." Dr. Gilligan: So I want to use that as a segue because we have two other subjects we need to cover in this podcast. Both in the article and in the session we did, we talked about the new ASCO patient-clinician communication guidelines, the first guideline that's been published. And that was published late 2017. The guideline was broken down into 9 key areas that we thought were important. One was just core communication skills. How do you have the conversation in a better way? One thing that's often unappreciated is that a lot of Americans have low health literacy. They have low numeracy. If we say to a patient, "There's a 30% chance of this or that," that may sound very obvious to us what it means, but it often is misinterpreted. And even lay persons, what we might consider average or normal numeracy or literacy, don't take in the numbers they get from healthcare professionals as fluently as they think they do, and there are better and worse ways that have been studied of doing that, and we talk about that. Cost of care is a new issue. Bankruptcy from healthcare is a large problem in this country. There's a lot of unaffordable drugs out there, so how to talk about that is an issue that comes up in it. Underserved population is a concern that we address, whether it's racial or ethnic minorities or other underserved populations. The LGBT community and their healthcare needs is increasingly recognized, and ways in which they encounter challenges in the healthcare setting a problem, so we talk about that. And then lastly, the issue of how do we train people to get better? There's been a lot of research in how people improve in communication, and I think the big take home from that is that communication is a motor skill. It's like learning how to play a sport or a musical instrument, and the way people get better at it is by practicing it and then getting feedback so that they can improve. And then the last piece that I really wanted to get your thoughts about was how do we talk about spirituality for patients with patients? We know that from studies of patients and surveys that the majority of patients think spirituality, whether or not that's formal religion, but spirituality in general, is important to them in coping with serious illness, and yet it's something that many providers feel unprepared or unskilled at in terms of bringing up. So in a sense, this links in with the former topic of key communication skills. I'm curious your thoughts, as a patient, what you think about the issue of spirituality and how it can be helpful to patients going through a difficult time. Liz Salmi: Yeah, no, absolutely. And thanks for clarifying. There's formal religion and then there's just kind of general spirituality, kind of a vague aspect or a way of looking at things. And, I think, as a person who-- I don't attend church, but I do think about how I view my place in the world and as that relates to my cancer experience is they kind of go hand-in-hand. And when I was first diagnosed, realized I had a brain tumor, and then I had a brain surgery, and I'm laying in the hospital 24 hours later, and a chaplain walked into the room and introduced himself and said, "Hey, I'm the hospital chaplain. And I just want to let you know that I'm here to talk to you." They are basically offering their support. But as a new patient and someone who's never been in the hospital before, I had no idea what the role of the chaplain was. And I told the person. I was like, "Yeah, I don't want to talk to you right now. What are you doing here?" And they also scared me. The presence of a chaplain, I had only seen from TV that if a religious person came into a hospital room it meant somebody was dying. And I was like, "I just had brain surgery 24 hours ago. They're sending in a religious person to see me. Does that mean I'm dying?" So it freaked me out, and I told the person, "No, I don't want to see you. Please leave." And then when the nurse came in to check on me, I said, "What was that all about?" and the nurse says, "Oh, if you don't want a chaplain to come see you, I can make a note to not have them come see you again." I said, "Yeah, please do that." So, actually, in my medical record, someone made a note in my inpatient notes, "Patient refuses chaplaincy services." And it wasn't until 2 years ago, so like 8 years after diagnosis and that first brain surgery that I learned a chaplain is non-denominational. They're there just talking about psychosocial, spiritual issues, that it has nothing to do with a particular religion at all. They're just there to help. And I think it's a bummer and a disservice that I didn't find out until eight years later when, really, I probably could have benefited from having someone to talk to from that perspective. Dr. Gilligan: I think the promise here is that if we feel confident that we have the tools to do this, and we know how to have the conversations, and then we start having them, we'll be taking better care of our patients because they're telling us in surveys over and over again that this is important to them, and it would help them if they could talk about it. But it has to be done in a skilled way. And as your story, Liz, tells, if it's not done that way, then it can be unhelpful. It reminds me of Rana Awdish in her book In Shock talks about story where she wakes up in the ICU, and she's getting last rites. And that's not really the way you want to be introduced to a priest [laughter]. Liz Salmi: No way. That's wild. Dr. Gilligan: It was kind of shocking to her at the time. Obviously, she survived to write about it, thank God. Liz Salmi:  Well, you talk about these communication guidelines, which are for doctors to help them better understand how to communicate well with patients, but I was just curious if you have a couple tips for the listeners who, mainly, are patients for this podcast. What can patients do to help ensure smooth communication with our healthcare team? Do you have any tips for us if we want to kind of take control of situation a little bit? Dr. Gilligan: Yeah, no, that's a great question. So 1 of the things I find interesting about that is that in the early research on the impact of communication on patient medical outcomes, it was documented very early that outcomes in managing high blood pressure, managing diabetes, other hard medical outcomes, not the more patient-satisfaction, softer stuff-- that hard outcomes improved if you either taught clinicians to communicate better or taught patients to communicate better. Either one has a positive impact on healthcare, so it's very appropriate to ask. The reason we focus on training clinicians is there are many fewer clinicians than there are patients out there. Training all the patients in the world would be a lot of people to train. I think the most important thing is to come organized, to have it very clear what your priorities are, and what you're hoping to accomplish, and to try to lay that out early in the appointment. And it's helpful for us clinicians to know, but it's also helpful to advocate for yourself if you come in with a clear sense of what your goals are and what you're hoping to get out of the encounter. I think the other thing I would say is it's really helpful to bring someone with you. I think if I'm ever in the hospital, I would want a family member there. And if I ever have a family member in the hospital, I'm going to be there, too, because in the modern healthcare system you need to advocate for yourself. And so I think being prepared and organized is one way you can advocate for yourself. Bringing someone with you can help, as well. The last thing I would say is the model of communication skills that we teach is really built around building stronger relationships between clinicians and patients. And I think that, on both sides, it's a 2-way street, that relationship. If we both pay attention to the fact that we will work together much more effectively if we have a strong relationship, then we can try to communicate with each other in a way that helps build that up. Illness is stressful. People get upset. They get angry, and all that is natural. But the more we can remember that, in the end, we're on the same team, we're kind of rolling the same direction. I usually find myself saying this to clinicians to try to avoid getting into unnecessary conflict with patients. But I think also, too, on the patient side. So those would be the 3 things I would really think about: being organized, bringing a family member with you when possible—I realize it's not always possible—and then paying attention to the nature of the relationship and attending to the relationship, not just the work that you're trying to get done. There's certainly more I could say, but it's a big subject. Liz Salmi: Yeah, no, absolutely. And thank you for that. It was really helpful. I know, from an OpenNotes perspective, we often realize that access to information also helps ensure smooth communication. And when doctors and patients are on the same page and able to look at some of the same information, a patient's level of understanding increases. And it helps us make better decisions overall. Dr. Gilligan: I agree, 1 of the things I like about giving patients more access to information is 1 of the things I, in a sense, challenge patients to do is to take more ownership over their own care. They should know what medications they're on, and they should know why they're on them, and they should know why they take them. I don't say that in a critical sense, but just if it's me, and someone has me on medication, I want to know why, and I want to know which drugs I'm taking. And keeping track of that, I think, taking more ownership over that, and really knowing your medical history to the best extent that you can helps you get better care in our system. Liz Salmi: Yeah. Absolutely. High five on that one. Dr. Gilligan: Well, it's been great talking to you again, and-- Liz Salmi: Same. Yeah, and thank you. It was a pleasure to get to write this article with you in the ASCO Educational Book, which, I believe, anyone can read at ASCO.org/edbook. Dr. Gilligan: That's right. That's right. So look it up, take a look. We hope that you enjoy it. Thank you for listening to our podcast. ASCO: Thank you Dr. Gilligan and Ms. Salmi. Please visit ASCO.org/edbook to read the full article. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play. Cancer.Net is supported by ASCO’s Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support. [music]

Patient Advocate Liz Salmi (TheLizArmy.com, Twitter, Facebook) & University Health Network’s Selina Brudnicki (myUHN, Selina on Twitter) discuss the #OpenNotes (twitter, web) movement promoting patient ownership & access to their health data.

Liz Salmi joins me this week to share her story of getting diagnosed with a brain tumor and multiple brain surgeries. Her patient advocacy journey includes co-creating an recurring TweetChat in #btsm, speaking at Stanford Medicine X, and advocating for increased research funding with elected officials. We also discuss her role at OpenNotes and the movement to make patient notes more open and accessible. Learn more about Liz and her work at thelizarmy.com and OpenNotes.org. Follow the National Brain Tumor Society for the latest research and advocacy updates. Keep up with the #btsm community on Twitter. And, check out Liz's Ignite Talk at Stanford Medicine X. Run Time - 50:50 Send your feedback to feedback@justtalkingpodcast.com.

The open-source movement has taken on patient health. Liz Salmi, a local woman who was diagnosed with terminal brain cancer nearly a decade ago, is at the vanguard of the movement.   Written by Sena Christian; read by Allen Young