 Welcome everybody to today's webinar. I am Donna Prosser, I'm the Chief Clinical Officer here at the Patient Safety Movement Foundation. And today we're gonna be talking about healthcare data and what data belongs to the patient, what belongs to the organization, how do we use that data to improve improved healthcare? So we're very excited today to be able to offer continuing education credit for nurses, pharmacists and physicians through MedStar Health. This CE is only available for those who attend the live webinar today. We have a great panel of speakers today and none of us have any financial relationships to report and neither does our planning committee. And so today, as I mentioned, we're gonna talk about healthcare data, understanding what is currently happening in our electronic health records and both from the clinician and the patient perspective, understand the safety and issues and the challenges with that. And then also we're gonna talk about some better ways that patients can access their healthcare data. And so we have some fabulous panelists here joining us today. We have Dr. Raj Ratwani from MedStar Health. We've got Martin Hatley who is with Project Patient Care as well as MedStar Health, Helen Haskell, the President of Mothers Against Medical Error and Ana Luisa Naveis who's joining us from Imperial College in London. So I'd like to welcome our panelists and I would love for our panelists to introduce themselves a bit. Helen, let's start with you. Tell us a little bit about your background. Well, I'm Helen Haskell. I'm a patient advocate. I came to this through a personal tragedy many, many years ago when my young son died from medical error in a teaching hospital. And we were so shocked really at what we found when he died that I ended up just, it seemed to be sort of a never ending project. And here I am 20 years later still working on the patient safety project. And transparency has been a big part of that as we'll discuss further on. Excellent, thank you Helen for joining us. Raj, tell us a bit about your background. Great, thanks Donna. Well, it's really nice to be here today. So I'm Raj Ratlani. I have two roles at Menstrual Health. I serve as the Vice President of Scientific Affairs for the Menstrual Health Research Institute and as the Director of the Menstrual Health National Center for these factors in healthcare. And today I'm here to share a lot of our work and thoughts on electronic health records, usability and safety and what that means to the patient. And really my work is driven. The whole reason I'm in healthcare is really because of my mother who's a physician and who's always loved practicing medicine. And several years ago, my weekly conversations with her, I, she lives in California, I live in Washington D.C. I call her every Sunday. And she used to always talk about how much she loves practicing medicine and how much she loves caring for her patients at the small community clinic. And that conversation shifted as electronic health records were rolled out very much to, I'm spending way too much at night documenting, I'm not as fast as the other physicians. This is too stressful. I wanna leave medicine. And my background is in human factors and usability. And so I thought, gosh, there's gotta be a way that we can try and resolve it. So that really pulled me in and looking forward to talking about that today. Again, great to be here. Oh, and I should warn everybody working from home with two kids, eight-year-old, four-year-old that are all doing virtual school of some sort almost guaranteed that they'll come bursting into this room at any moment. So please don't be alarmed if kids come sprinting in here. I've warned them that they're not gonna listen. The joys of a pandemic. So thank you, Raj. Thank you so much for being here. Marty. Good morning, Donna and everybody. I'm Marty Hattley. I'm the president of Project Patient Care, which is a small coalition in Chicago that really is dedicated to using the voice of the patient and family in improving care. So I think of myself primarily as a patient safety advocate. And within that pretty large space of interest and a lot of issues, I'm really, really interested in engaging patients and family members as more complete and more full and more ramped up partners in producing the best outcomes and the best experience for patients. So great to be here with you today. And I'm a lawyer by background. All right, Anna. I think you're muted, Anna. Great, classic music. So I'm a research fellow at Imperial College London. So my department works mostly on patient safety. So actually the name of our department is Patient Safety Translational Research Center. And most of my research interests are about digital technologies and how can we use them to actually partner with patients, engage them in the process and improve quality and safety of care. So I became actually much more interested on the electronic health records aspect and sharing the electronic health records with patients through portals or other kind of interfaces. And this has been pretty much the focus of my research. I was smiling when I heard Raj's story because I think I have two things in common with the story. So I'm also a family doctor by background. And I could share a lot of things that you mentioned about your mother. And I also have twins, which hopefully you won't see because they are back to the nursery, which is a good thing. So yeah, that's me. And thanks for the advice. Excellent. Well, thank you so much for joining us this morning. I know it's late for you over there in London, much later in the day than it is for us here. So thank you. All right. Well, let's go ahead and get started. We have lots of questions to get to today. I'd like to start first with Helen. Helen, talk to us about what data should patients want to have access to? How can we make it easier for them to know what it is that they should have access to? Well, in my opinion, from my perspective, patients should have access to anything. Nothing about me without me. So patients should have access to the entire EMR, especially while they're in the hospital, which is of course right now the most difficult time to get it. Plain Tree has always had that philosophy. I don't know exactly what they do in Plain Tree hospitals, but certainly the idea that patients should have access to their own medical records is a pretty old one. And I think now EMRs are pretty sophisticated. They can generate patient-friendly records if they want to. And one of the things that I have learned in my years of working with patients and providers is that if something is comprehensible to patients, then it's also comprehensible to healthcare providers. And the reverse is also true. Often people just don't understand things, and they don't of course want to say that because they feel as though they're supposed to. So having a plain language EMR for patients might well be a benefit for everyone. And I just want to add, I don't want to go on too long, but there are larger things than personal data. So healthcare ratings, infection reporting, for example, which I've been involved with for many years. It's limited to a very small number of specific infections which are no longer really the biggest threats to patients. We need things like hospital-wide infection reports. And we need reports on outcomes, long-term outcomes for procedures. And this can all come from real-world data and also from patient reporting. I think none of this is gonna work without patient input. So when I started in healthcare 30 years ago, it was pretty clear that the hospital felt like they owned the medical record. And this idea of sharing data with patients wasn't something that we did. So can Helen talk a little bit about the background here. How did this movement get started? You know, it's very interesting. So it started as part of the consumer movement in the 1970s. The patient rights movement was part of the consumer movement. Nader's Raiders is what most of us have heard about from that era. But all of that really sort of transformed our ideas across society about safety and transparency and really linked the two for the first time. It's just hard to remember that people in the 1970s didn't have access to any kind of medical information, including the medical literature. Medical knowledge was a closely held secret. And some of the very first patient groups like the Center for Medical Consumers in New York City started out by creating medical libraries for patients where they could come and look up their conditions. They would even, you know, they would mail, they'd copy things on a copy machine and mail them to them. Getting hold of your own medical record was sort of the flip side of that. People didn't really know when they'd been hired. And it happened a lot less because it was a lot less medical care going on. As there was more medical care and more knowledge, and especially with the internet which sort of blew everything wide open. People naturally wanted to know more about what was going on with their own care. But it's never been easy to get hold of your own record. It's taken really the recent actions by the federal government to make it clear that patients do have access to their records. But there are often still issues. The medical records are scattered across various departments. If there's harm involved, providers aren't necessarily keen to have patients see all their records. We still have a long way to go. Marty, I know you've been working in this space for a long time. What do you, anything else to add to that? Yeah, it's interesting to me to hear you, Donna, and Helen talk about who owns the medical record. Cause from a legal point of view, it's pretty established that the patient owns their medical record. And the struggle in the courts usually, and it's usually in the context of a professional liability suit is getting access. So ownership has been kind of honored by the law, but there's been a tolerance of quote unquote reasonable restrictions on access. And often that came about as you would be charged a lot by your doctor to see your medical record. So they would charge you $5 a page, something like that that, you know, would strike most of us as unreasonable when there was a copy machine right around the corner. But anyway, that the legal principle is clear. And then I think the real issue has been access. And I don't really think of it as driven primarily by the consumer movement. So Helen, I learned something from you. I think of it really as being driven by the patient rights movement, which is an extension of the human rights movement that we're entitled to information about our bodies. We're entitled to be the decision makers about our bodies. And that goes back really to, you know, a lot of the ethical work after World War II about who owns our bodies and who's entitled to information about them. Well, I wonder if you can also then talk about open notes. There are some folks on the line who might know about that, might not, just tell us a little bit about that. Well, open notes is, it's an approach. It's an approach that really, you know, at its very simple level is to provide complete access to all of the medical records. Everything that Helen wants, open notes is the approach that would give you access to your complete medical record. And it's also a movement. So there's been a lot of thinking about this since the 70s, when I think the first articles were published saying that people should have access to their medical records, not only to improve safety and quality, but to improve the physician-patient relationship, that will be stronger and to empower patients to become people who can actually do something about the rights that we're now acknowledging that they have. So it's a movement and it's also a really sort of well-organized organization. OpenNotes.org has a lot of current information, easily explainable to people if you wanna learn more about it. So it's all those things, but basically the concept is really simple and that is we have a right to our records and we're going to make those records more and more accessible. By records, I mean everything. I mean, including the clinician notes, the progress notes, those are the things that have traditionally been thought of as sensitive. Would the patient understand them? Do we really want the patients to know what we're saying about them? And that's being driven by transparency. Donna, though, if I can add, OpenNotes doesn't do that yet. I think that is the goal, but OpenNotes has been very incremental in their approach. So they're our notes program, which is the patient sharing program is really sort of an agenda setting by the patient. The patient submits information and then the providers decide whether they want to include that in the record. So it's sort of like a be prepared. That's a program at AHRQ that MedStar created. And there are others too, just sort of a way to talk better to your doctor. But it's interesting to me, when this started, there was a lot of opposition. The doctors were opposed, the patients all loved it. There was actually a 99% approval rating from patients, which I've never seen anywhere else in medicine. And 90% of them wanted and extended the hospital stay. So clearly this is something that patients want. I remember meetings as early, as late as maybe 10 years ago, where the topic of the conversation would be, oh my gosh, can you imagine what patients would say if they actually saw their records? If they actually saw what we write about them? And I think it is, Helen, I agree, it's a call to action. It's a movement in the sense that there's not everybody sort of agreeing on the details, but they're all agreeing on the direction and sort of at the more extreme end of that is propositions that we're hearing more and more about, about patients actually being able to add to their records or to correct their records or to make notes themselves in their records. So there is kind of sort of a range of pieces to it that are all still in development, I think. Many of them are still in development. And until you have that, I think, that's when you will get accuracy, when you can have patients adding to the records. And correcting. I mean, I think we're already seeing the literature emerge where if you do have access, people are finding the errors that we in the patient safety movement know are pretty routine in the system as complex as healthcare is and as complex as record keeping in healthcare is. That's right. Empowering patients is safe for everyone. So, Raj, you have a, you got a campaign there at MedStar Health called the EHRC What We Mean campaign. I wonder if you could tell us a bit about that and what the impact of that campaign is on patient safety. Yeah, absolutely. We'd be happy to. So if people are not familiar with it, I highly encourage you to check it out. You can go to EHRCWhatWeMean.org. And really the campaign is about bringing greater transparency of electronic health record, usability and safety. And we launched the campaign in February of last year which marked the 10 year anniversary of really the big legislative act to promote the use of electronic health records. That was passed way back in 2009. And over the course of, if you look at it from 2009 to today, we've moved to nearly every healthcare facility in the United States using electronic health record, 90 plus that use an electronic health record. And what people probably don't realize because you're probably not thinking about this every day, nor should you be, is that the way these electronic health records are designed and the way that they're implemented and used can actually facilitate a whole host of really terrible errors that impact our care. And so we see errors where wrong patients are being selected out of the chart and then medications are ordered for them or procedures are ordered for them. Wrong weights are documented on our children. And then that means that when they're prescribed the medication and most children's medications are based off of their weight, that means they're gonna get an overdose of medication. And we've just done study after study on this and found these really poorly designed electronic health record system better leading to errors. And the campaign really was sparked because in the contracts, at least historically in the contracts between the electronic health record vendor companies that develop these systems and the hospitals and other healthcare facilities that buy them were something called GAG clauses. These clauses actually explicitly prevented, forbid the sharing of screenshots and examples of these errors, which we thought was just horrific. I mean, if you look at any other aspect of medicine, medication errors, medical devices, you name it, there's incredible transparency and there's databases to collect those issues so that we can fix them. And that has not been the case of electronic health records. And so the campaign, and if you go on the website you'll see very explicit videos of actual physicians using the electronic health record and the challenges that they face. So for example, one of my favorite ones to cite is we have a physician, emergency physician that's trying to order Tylenol, pretty basic medication order. They type in Tylenol to search for the medication in the electronic health record. They get 86 different options back. And they're trying to place a medication, they're trying to place the Tylenol order for a young male, 22-year-old male. They get children's Tylenol examples, infant Tylenol, Tylenol for women, all kinds of things in those 86 options. So why do we care? Why does that matter? Well, imagine if that's the kind of interface and system you're using for a 10-hour shift. There's such a huge likelihood that they're gonna select the wrong medication. Now thankfully with something like Tylenol it's pretty low risk, but when you start thinking about all the other medications and procedures that they order, of course errors are gonna happen and they're gonna select the wrong thing. And that has very, very serious implications for patients and patients have actually died because of some of these issues. So the goal of the campaign is to heighten awareness of these kinds of issues. Thankfully, the Office of National Coordinator that oversees electronic health records in the United States has moved to remove those gag clauses, but the work's not done. You now need to have a central reporting system for these. And this goes back to the central conversation around making sure patients have access to their records. One of the critical things that we tell patients is we know that these errors are gonna happen because of the design of electronic health record and patients are a critical line of defense to make sure that the information in the record is accurate. And so I always tell folks, check the most basic information, check the demographic information, check to make sure that it's actually you that it has the right age, the right weight, that the procedures in there and the medications are actually yours because people will be shocked as to how many times incorrect information gets placed in the record. And it may persist in the record that our clinicians who are all well-intended and doing their best, that the records are so dense that they simply may not see that wrong information is there. And then at some point in your care trajectory, they may look back that information and make the wrong decision because that information was never supposed to be there to begin with. So that's sort of the gist of the campaign. And again, the big next step here is really making sure that we can find a way to capture all of these safety issues into a central database so that we can analyze them and improve the system. And it's worth noting that we're not, this is not about, this is not anti-EHR. If you think about where we are in terms of technology and you look across domains, it's a no-brainer that we need electronic health records in medicine. And if you talk to physicians and nurses and other clinicians and you say, do you wanna go back to paper? The majority of them would say no. There are tremendous benefits to this technology. But what we need to do is we need to optimize this technology and make sure that it's safe for everybody. So that's the big challenge ahead of us. There's several positive things that are happening, but that's certainly the big challenge ahead of us is making sure that these EHRs are properly designed to implement to ensure safe care for everybody. Sonika, can I weigh in here on this question too? Because I am a huge fan of Raj's campaign. And I know it's not just your campaign, Raj, but it's a campaign you put together. So EHR, see what we mean. Go to that website. And one of the many reasons I'm a fan of it is that Raj is walking the talk of engaging patients and families. So we're not only talking about them getting access to their own records and all of the areas that they're gonna find, how they're gonna help us make those records better. But he's also engaging them politically through a request to write your congressman. Get educated about this. Let your elected officials know how important this was to you because with all due respect to the OMC, they didn't move that fast on this. They needed some prompting. And these gag clauses were really, really aggressively enforced that he's talking about. I mean, it was that there were threats. If you share the error that you found in our system with anyone else but me, the vendor, then we're gonna go after you legally. And that of course allowed the vendors to charge every client. So you would learn from one client where your problems were and then you would charge other clients to share that knowledge with them. And that is just completely anathema to the spirit of a systems approach to safety, which is spreading lessons learned as rapidly and as extensively as we can. So it's a brilliant campaign and a great website. Well, thanks, Marty. I really appreciate that and Marty's always been so supportive. And I think as soon as he starts talking, it gets me fired up again about the whole thing. And keep in mind that this was a $40 billion US tax investment so that's all of us here. Won't make any political jokes, but most of us are paying taxes and those taxes are going to pay for these systems. Yet we can't make the improvements to them. And Marty's exactly right, is these clauses have been in those contracts for a very, very long time. And the other clause that is noteworthy and needs to be removed but still persists is the hold harmless clause. So that essentially says if a patient is harmed because of an issue related to electronic health record, the electronic health record vendor, the company that produced the electronic health record cannot be held viable for that. And that's nuts, right? And what it should be is we have to go back and we have to look at how that issue emerged. And if the vendor was responsible or partially responsible, they need to be held responsible for that. If it was the healthcare facility that made a change to the system and that's what resulted in harm, then that entity needs to be held responsible. So that's the next big push for sure is trying to start tackling that hold harmless clause. One more word and then I'll stand down. But the other place where we really happy working on gag clauses is in the settlement of professional liability claims because that's the other place where they're used so extensively. So just thinking about it, you've litigated over a problem with care, breaching the standard of care allegedly, you've come to a settlement and then we gag the family from being able to talk about it. And it's the same principle. If we don't talk about our mistakes and learn from them, then we repeat them. I mean, we're exactly, we're putting fuel on the fire of them getting repeated from place to place to place that haven't heard about as early as they could have. And there are amazing case studies of just problems that have emerged in healthcare, you know, at different facilities around the country that stay quiet for years and years and years because of these gag clauses. So it's a bigger principle, but one where we're getting some traction with EHR, see what we mean by the website. Excellent, excellent. Anna, I'd love to have your perspective from the international community. Raj just talked a lot about some of the issues that we're facing here in the United States. Can you talk to us about the user issues that you're having and whether or not you have any challenges like what Raj was talking about here with the ONC? So I think actually they are quite similar to the challenges. And one of them from the physician perspective, as Raj was saying, of course, is the user friendliness of the system. Sometimes it's just too complicated to find or to prescribe a given treatment or to prescribe an exam or whatever it is in the list. But it's also a problem with interoperability because quite often as a GP or as a secondary care doctor, you need to open two, three or four different softwares to do three or four different actions. Let's say I open a window to enter my patient notes and I enter another window to do a prescription and then pop up to stratify the risk of cardiovascular disease. So it's actually quite a burden. And actually family doctors and general and secondary care physicians actually state this very loud and they say sometimes it's just such a burden to tick all these boxes that we don't really have the time and the energy to focus in the patient. And they actually say spend more time looking at the computer or at the screen that's at the patient. So these are big issues. Of course it has huge implications in communication, patient-doctor relationship, et cetera. So the challenges are quite similar from the user side in what concerns physicians. I guess, I think it's also important. I really like one of the points that we raised before about the safety implications of these because of course if a doctor is tired he's not going to register things as he should maybe or maybe some information is going to be lacking there because there's no time to tick all these boxes. And of course these guys direct implications into patient safety of these patients in front of us. But nowadays we have actually higher implications because as you know, all these data from electronic health records are more and more being used for studies to stratify risk, to predict risk and to generate knowledge based on that. So one of the big issues is that actually electronic health records and data contained there have a lot of quality issues. And we are using datasets with quality issues that we fully acknowledge to generate conclusions and to apply these to general populations. So I think that's actually a second layer of complexity in what concerns patient safety. And I don't think there's a way back there because we just understood the potential of these datasets but I think there should be a huge drive to find strategies to mitigate these quality issues because otherwise we'll be impacting patient safety in too many levels really. So that's from the user perspective. I also think that from the patient perspective in what concerns usability of patient portals or other facing interfaces, I think in Europe we have mostly two problems. One problem is about information as Ellen said before. So classically medical records or medical notes are not written for the patient, they are written for the doctor themselves. So we are not really trained and I think this is something that will change and must change. As doctors we are not trained to write patient notes that are understandable to the patient. We write things that are understandable for ourselves and for our peers. And I think the more and more we understand that patients are part of the process, they will read it, they will contribute, they will check error, they will amend them if possible, I think the more we get aware of these, the more we need to actually adjust the way we write patient notes so that our writing actual lines with these overall culture. And I think that there's an issue with information and with patient notes that needs to be adapted with time. And of course, apart from the information itself we have the problem with interfaces that sometimes are not very friendly, very intuitive for the patients. And something that we have been discussing quite a lot recently and particularly in our research area is how do we engage patients and doctors in the design of these interfaces? How do we make the process more interactive? How do we get them back versions of the software so that they can contribute, send their comments back and we can adapt these rather than having this top-down approach where someone's in company with a multidisciplinary team, that's fair, but they provide a solution that starts, basically, that keeps the same and doesn't really evolve. So I think that's something that's quite critical for the future to improve usability, really, to evolve patients and to try to have a user-centric design as much as possible. And how do you find the public perception there in Europe? Helen Haskell mentioned that here in the United States 99% of patients that they wanted to see their information. Is that also true in Europe? Yeah, I think so actually I wanted to share some results with you. I'm not sharing the screen, I can just give you a summary. So overall patients want to see their records, but what is also puzzling is that, so we ran a survey, so this is published, I can give you the reference and make it put it in the chat. So there was recently, there was a recent survey in the UK and US asking patients, do you know that you could have access to your records and 20% of them didn't know that this was actually a possibility in both settings. So this is a survey, take it with a pinch of salt. I'll share the link here in the chat and you can read the details. So for me, this is something quite puzzling and tells me that there's a lot of work to do in communication to tell patients actually, there's 20% of patients that doesn't recognize this as an opportunity. So we need at least to try to pass this message as much as possible. Overall, yes, they are willing to read the records as you said, there are different views as Martin said, actually there are different views on the details on whether they should see doctor notes or results. So of course the results and tests, so this is something that's quite accepted globally. When you start talking about patient notes even between patients, some patients actually say that that could create anxiety, they would like to see a kind of a more digestible summary of the information and something that I find really interesting. So we got that in one of our recent studies. We asked patients about their experience reading the notes and they said, I'm okay about reading the notes, I'm okay about reading the results, but I would like to have some kind of explanation of what to do these results mean. Because what's happening here in the UK for instance, is that sometimes some providers actually send you a text message or saying just check your website because we have test results there. So as a patient you go there and you see something like liver function tests of normal or outside of normal range. And for a patient this can be really stressful because they don't know if the slightly high value is something really bad or is something that's kind of normal. So just plugging the information sometimes is not enough and for some groups of patients they would like to see an extra layer of information so they could interpret these a little bit better. So I think as Martin said overall, yes, their support, we all agree that that's direction, but we might not all agree in the details really. Interesting. Well, Marty, I wonder if you can talk to us about the new ONC role that has just come out here in the United States about data sharing. Donna, I can try. There is a new role that I think has the potential to be very transformative at least in this country. So I'm really curious, Anna, just as you sort of survey the world where you think are the countries that we should be looking at as leaders because I'm impressed right now that we are stepping up in our country. And this new role came out of something called the 21st Century Cures Act, which was passed in 2016, which was really intended to increase usability and interoperability of the electronic healthcare record. So it's not an open notes rule. It's just one that overlaps and frankly brings in a lot of the thinking of the open notes movement. And there's parts of it that are very clear and it includes a list of the different kinds of records that patients and family, the patients are going to have access to, must be given access to. And it's a pretty interesting list. It's consultation notes, it's discharge notes, it's procedure notes, it's progress notes, all those things where there's some variation in addition to just results, labs and pathologies. There are, where it gets confusing is that there's a timeline that looks pretty aggressive in terms of the way the rule actually reads. And it's supposed to start in November where what the rule refers to is actors, but think of actors as health systems and other people with access to this information have to start making this information available. But then there's a whole section of the rule that just takes into account COVID and says, you know what, here's our timeline and then there's COVID. So there's going to be some delays in the implementation of the timeline. So the train has left the station but whether it arrives at its destination on time and the stops it's gonna make along the way remain unclear. And then there's a list of exceptions to the rule. Certain things that I just can't find detail on yet and that's where I get really confused. So there's an exception for things that are sensitive information like psychotherapy notes. There's an exception for information about it's generated in anticipation of litigation. But there's other things that are just kind of in fact, Adam mentioned one of them will provide you access to the records actually create harm for the patients. So one would hope that would be a very narrow exception perhaps where we see that mostly in law is when we're dealing with children is really do children have access should they have access to all the things that we're writing about them? But those things are gonna have to be worked out. There's also some wiggle room for cost how much we can charge for this for technology to be able to do it. But the goal ultimately the station if we will that we've left the station the arrival station is really complete access across all devices for patients and families including smartphones. So that's where it feels really transformative to me that we're gonna have in these super computers we all carry around in our pocket now at least in my country, pretty easy access when this is fully realized to our information in a way that really is usable by us. And the, I also just wanna say the best place I can see for tracking the rule is the open notes website. There's an infographic there about the timeline. It's not a clear timeline to me but there is an information there that's up there in real time. Ross? If I could just quickly jump in I think Marty summarized that really nicely and the other important part of that 21st Century Cures Act legislation that the ONC is really pushed for and is a great thing is the idea of application programming interfaces. So APIs for short and all of us whether you know what they are or not we've all experienced them. So if you're searching for a, when we used to fly around the world when you were searching for an airline ticket instead of having to go to every airlines website you could go to essential hub you could go to kayak.com you could go to cab velocity and what those websites do is they're using these APIs to ping those different airlines websites and source all that information into one place. So why is that important for us as patients? Well, what the 21st Century Cures Act and the ONC has done is said those APIs have to be enabled for electronic health records for a certain subset of information and that information will continue to evolve and grow over time. So that becomes really important for this conversation for multiple reasons. What that's gonna allow us to do is to have new tech companies come in and develop new apps just like we have on our smartphones that are gonna potentially resolve a lot of these usability and safety issues that we've been talking about with the electronic health record and those apps would be accessible by patients so that they can look at their data in a different way. So for example, if I wanna look at my I use running apps, I like to run a lot. So if I wanna look at my blood pressure levels and my other patient information in conjunction with my running data somebody could build an app to do that and they could source the data directly from my record. Similarly, if I want help managing diabetes somebody could build an app that would do that and would directly source information from the electronic health record. So that becomes really, really powerful and it starts to solve this issue of EHR usability and it starts to get more data into patient hands but the risk with that is as soon as you have a third party company come in and build one of these apps I'm sure everybody reads those legal agreements whenever they download an app. You know the ones that have like 11.10.8.6.5 in multiple pages and we usually just click agree to everything because we just wanna use the app. We'll embed it in there is what that app developer gets to do with your data. And so now as we start thinking about how this unfolds download an app that allows this new company to access my health information because I want help managing my diabetes but in that legal agreement it might say oh by the way Raj, we get to use your data for all these other purposes we get to sell your data we get to share your data et cetera. So it's a really positive thing because it's gonna help resolve a lot of these issues but it also opens up this new challenge of really ensuring that patients are aware of what's happening to their data with all these apps. And that actually I think is not too difficult to solve if we get our act together and come up with a standardized form that basically says here's how your data is gonna be used and here's what happened. It'll probably take us years to do that but that's where we have to go. So if I might jump quickly there, that's okay. I think that's a very important point and it's actually quite a discussion right now here. So it's wrong except that patients should have access to their data, their own data but the more these apps are coming and they're already happening, the more the debate goes around what is happening to these data and whether it will be shared with third parties. And I think again that's an aspect which is really important to listen to the patients again. So the experience that we have here and I'm talking just in the UK, I don't know the reality specifically on these other countries but here in the UK most of the studies show that up to 95, 98% of the patients say please do use my data anonymized for whatever they consider greater goods. If you want to use it for research, if you want to use it to find what works better, what kind of treatments for patients would do best with a given treatment, et cetera. So most of the patients are fine use it. If they are anonymized, you can use it for that. Once you raise the problem that this is potentially shared with third parties, with potential commercial interests and possibly they can be monetized to generate profit, of course, acceptance rates fall to 20, 30%. So I think this is a very, very interesting area. I think we'll hear a lot on that in the next years slash decades. And again, I think it's a point that we should really discuss with patients and try to hear what they say. And as Rach said, I think whenever this comes an issue, this just needs to be said upfront and very clearly to patients. So this is your data, this is for how long we'll store it and this is the people that might potentially have access to it. And of course they have a say there, really. So, Donna, if I can also add something. So my perception of this rule to take a slightly different tactics is really mainly focused on interoperability between institutions. And there are, well, that's a great thing in a lot of ways. There are also concerns there because as we've been discussing, records are inaccurate. They're often wildly inaccurate. And if you get an inaccuracy in a record, a significant one, it can follow the patient wherever they go if you have interoperability. So there are a lot of patients like people with chronic diseases who really fear interoperability. So I think again, I hate to sound like a broken record, but this is where you need patient input, including corrections and by correction, I would say addition. But it really is the patient input that will make these things work and make them helpful and make sure you don't have that sort of democles hanging over people's heads. And then the other thing that, you know, the list of things that are available to patients that Marty cited. So I've been trying to figure out this rule as well. And one of the things that I would say is that previously patients had access to all their information with the exception of psychotherapeutic records, which I think open notes is trying to address in a different way. But in general, you know, I think there is a possibility that in this giant flow of text, we'll end up limiting the information that's available to patients. And that's something that we really need to watch out for. There's been a rule against withholding data from patients for a long time, but it's never been really enforced. There are just almost no cases that I know of. I know of a couple where HIPAA violations in the US have been, where hospitals have been cited or doctors for failing to give patients their records. Thank you, Helen. I wonder if you can kind of take us into the final stretch here. I'd like to ask each of you to give me your final thoughts. You know, what do you see as the broad long-term goal for data sharing and what do you think we need to do to get there? So Helen, I'll start with you. Well, you know, I think I was thinking about what Marty had said earlier about the human rights movement. I just wanna sort of go back. I think the consumer movement is part of the human rights movement and part of the patient rights movement. They're all intersected with this, the idea that has gradually grown over the course of the 20th century and hopefully now the 21st as well, that people really are autonomous and have rights. But again, the consumer movement, looking at it from that angle, which is sort of a practical angle of how do you get this information? We've always focused on how do you get improvement. We've always focused on transparency. Now you can't necessarily, we're not medical experts, but we can keep an eye on our own care and what's going on in healthcare facilities. And people now have the ability to learn a lot about their own conditions and about what can and should be done in safety and quality. So people are part of the team, patients are part of the team, and they can potentially contribute a lot. And if you pull back a little bit, I think the potential for patient level data is really enormous. So there are any number of studies that have indicated that patients can contribute valuable data to their own records and that it's often more accurate than information that's been filtered through the provider. And that's the standard way we put it in the records now. But right now the main way for patients to contribute data is through patient-reported outcome measures. Those are pros or prompts. But most of the prompts are still pretty restricted by the notions of what a patient is supposed to know. So they don't really include the patient's opinion or their thoughts, but just sort of raw data on functionality. There are a lot of people who are really aware of the need for better prompts and I'm hoping they will be forthcoming soon. I'll just say that one of my favorite researchers is a doctor named Ethan Bosch from North Carolina who's followed oncology patients for years. And he has found that patients whose chemotherapy was adjusted in accordance with their own reports of side effects live significantly longer lives than those who got standard treatment. This is really groundbreaking, right? How widely applied is it? I don't know of anyone else who's doing it. I'm not in the world of oncology, but I don't hear much about this. And then if you take it up a level, you get big data, so accumulated patient records, what we were just talking about, what you're now being used for all sorts of other purposes that don't necessarily benefit patients. But at the same time, these have the potential to tell us more than anything about safety and quality and the effectiveness of medical care. And there may be people who are sort of vested, have sort of vested interest in not looking too closely at effectiveness, but what medical treatments work? What facilities are safe? Studies, even large studies are often written in a way that look at pretty narrow topics and that can be written in a way to provide sort of desirable results. And I think big data, including patient reported information, and for that matter, provide a reported information on safety issues aside from the official information. Those things can really provide a foil to the limitations of studies, real world data. That's my feeling. Thank you, Helen, I appreciate it. We do have a few questions, but I'd like to get everybody else's final thoughts before we jump in there. Raj, how about you? Great, thanks, Donna. I'll be really brief. So just two things from my side. The first is now that we've made the tax dollar investment to digitize medicine and we have electronic health records in place, there's so much opportunity with the apps and so many other different pieces of technology that are evolving and that world moves really, really, really fast. I mean, incredibly, incredibly fast. And so as patients, we all have to stay on top of this and we have to get involved in one way or another. And so we spent a lot of time talking about these ONC rules. Well, when these ONC rules are first proposed, they're up there for public comment. And I know for sure, because I've read them, that the electronic health record vendor companies and everybody else is commenting. But my bet is that 73 attendees or 71 attendees that we have now on this call, I'd be shocked if anyone else other than Marty and Helen responded to comments. And so we have to mobilize and get together and be commenting on that legislation because we're the ones that are gonna be impacted by whatever is formulated. So that's kind of critical point one. And then the second one is it's always shocking to me, I'll talk to friends and colleagues and always when we're talking about this issue, I'll always say, well, how often do you check your financial data? And most of them will say, oh, crash, all the time. Like sometimes I log into my online bank account daily just to make sure everything's there at least weekly and I'll certainly look over my credit card statements. And then I'll say, well, how often do you look at your health data? And they'll look at me like I just landed here from the moon, like what are you talking about? What do you mean look at my health data? Why would I need to do that? How do I do that? It's just shocking. And so we have to build that into our behavioral norms. And I think the financial industry is such a good model for us because I can log into whatever number of bank accounts. I can also pull those all into one place, their websites that offer that. I can also transfer money to Anna in pounds in minutes. So that's interoperability, that's safety, that's checking our data, that's access all already solved in the financial industry. So I would just encourage people to think about these other domains and what's happening there and then ask themselves, why can't healthcare be that way too? And what behaviors am I using with those other domains that I should also be using for myself in healthcare? And I'll stop there, thank you. Wow, what great, I love that analogy. Thank you, Raj. Marty. It's a huge topic. So what I've been focused on mostly are the obstacles to getting usable information that's accurate to patients because I do think the empowerment potential, which I've already mentioned is huge. And the EHR for me is something that I'm worried about because I don't think it was really designed with the best interests of the patients in mind. We say it was, but it's far from that goal. We've still got a lot of work to do there. When I look at it, I think of it as being driven a lot by billing and administrative procedures than really being a patient centered. And I think this whole movement can help us pull that in the right direction. I'm really making that a tool that's useful for patients and the people who treat us. I am worried about the big data piece and I also am excited about the big data piece because I think if we can, again, the potential and the best of all possible worlds is to see data synergizing from different places to really be something that patients and families can use. And then I'm just really interested in best practices. So as we talk about what needs to be done next, what are the countries or where are the places where, you know, accuracy is being paid attention to and the use and sharing form that Raj mentioned is being developed. And whenever I kind of jump onto the net and try to figure out what's going on around the world, I find myself kind of going to countries that are really celebrating patient engagement and patient empowerment already. And that's where you find some of the best advocacy about open notes. So Scotland, for example, I don't know what's happening in Scotland, but there's just a commitment there at a policy level to fully engage patients and families. And I think that will be another place to watch is just countries that are doing that are probably gonna be a source of some good tool development. So those are my very random thoughts. Well, thank you, Marty. And then finally, Anna. So I'm not going to repeat what everyone just said and I completely agree with everything that was said so far. I would say that a different aspect that should be considered on patient engagement is actually to measure what the patients want because there's no proper research on that. We need to actually listen to patients, ask them what do you want to see in which format? Do you have the skills to assess these? Do you have the literacy, general literacy skills, but also the digital literacy skills that you need to do that? And once we get a clear picture, we can design strategies to help them or to help those that need and want to engage with the system. And I guess an important aspect here is also health equity because we are moving to digital. There's no way back, I assume. And we just need to be very aware that while patient portals and electronic records accessible to patients via websites or other kinds of interfaces, they do improve patient safety. We gave several examples. They do improve medication discrepancies. They reduce the number of errors. This has been documented. But we must be aware that maybe these benefits are just going to be for a small slice of the population. So we need to try to understand who is being left behind and why and how can we try to support everyone in the same direction? Because what we do not want with all these is to create benefit that is actually entrenching inequities that are already there as well. So that's the final thought on this as well. Very good point. Thank you, Anna. Well, we have just a few questions. The first question, Roger, I'd like to direct to you. That's coming from Teresa Gentry. She's talking about a situation that happened at MedStar where the storage company was hacked. Can you talk a little bit about that and what happened in that situation and what can we learn from that in the future? Yeah, absolutely. So this is an unfortunate incident that's happened to several hospitals across the country where the company that stores health information can be hacked. And sometimes it was happening all the time last year pretty frequently where hospitals were directly getting hacked and there's elsewhere events. And so I think, Teresa, and I'm looking at the question here specifically about what's the responsibility of disclosure to patients? So the HIPAA rules here are very clear that that information needs to be disclosed to patients in fact for one of our children was born at a noma nearby and they were hacked and we just got the letter in the mail that said your information has been exposed. So the HIPAA guidelines are very clear and other regulations are very clear about disclosure. And I think Teresa's real question is what about the timeliness of this and timeliness seems lacking? I'm not aware of the details of the investigations here but what I can certainly say is that when there is a pending investigation by the FBI DOJ that will slow down disclosure and that's where there can be exceptions to immediate disclosure, totally out of my wheelhouse. But I have seen that and heard that and seen the policies on that. And it's certainly the case that if there's a federal investigation which should happen because of a hacking or other incident that can slow down the timeliness of any disclosure to patients. So I'm wondering whether that could be the case here but I'm not familiar with it. Helen, a question for you. You talked a lot about patients being able to add to their own records. And one question that we had was related to errors that could occur if the patient were to have access. What are your thoughts on or your concerns about patients being able to potentially delete something or enter something incorrectly? You know, I think that nothing should ever be deleted from the medical record. That's my perspective on this. You can add, we have a problem with that already. The records that patients receive are often changed and that certainly creates a lot of suspicion. You know, when they've been corrected and sometimes that suspicion is justified if there's patient harm, now we can use metadata to sort of go back in some records and see what the original was. But it just makes sense to me that whatever is originally written, you keep that and then you add comments or corrections underneath that. Great. Anna, we have a question from Brazil. And so I wonder if maybe you can help us with this. They're saying that most hospitals there are still using physical medical records. They haven't gone completely electronic yet. Any thoughts on how we can improve data access to patients when there isn't an electronic environment? So, I don't know the reality in Brazil. I know quite well reality here in the UK and I can say, although there was a huge drive to digitize whatever you could, this was quite successful in primary care. So basically in primary care, everyone is using later on the records. It was not as successful in secondary care. So the problem in Brazil is not only in Brazil. So here in UK, we have same problem in secondary care. So there's a process to provide access anyway. So there was a process before. So as we discussed for 30 years, that is legally slash ethically a knowledge that patient owns the data. So even if it's paperwork, there's a process you can just ask to the hospital and they will provide you a copy of the notes, of the exams, et cetera. There's another thing that for me, so I'm originally from Portugal where everything is free as a patient. You just ask your notes and they'll give it to you and that's done. Here in UK, you do have to pay a fee and that brings me back to Martin's comment before. So that you have an example. Myself as a patient, I asked for my patient notes 20 or 30 pages and I had to pay 50 pounds. So this is something that for me as a patient is kind of surprising when we all acknowledge that patient owns the data. But in some countries, you do still have to pay to have access to the copies. And for me, that is a barrier to access because for some people might be fine to pay 50 pounds but for others might not. So I think that's a barrier to access. Answering your question, there are a lot of countries that haven't transitioned completely. They still have a process, so patients can still access. And I suppose that they might waive the fee if you say you don't have conditions to pay it. So you might possibly still have access to that even if it's not electronic. Excellent. Well, we are right at eight o'clock. So I want to thank all of our panelists. Thank you so much, Helen, Raj, Marty and Anna. I appreciate you being here today. And thank you to our audience members. We are always available here. If anybody has any additional questions, please send them our way and we can get your answers from the panelists. So as always, the recording of this webinar will be available on our website. If you are seeking continuing education credit for this activity, then if you registered with your proper credentials, then you'll receive an email from MedStar with information on how to collect that CE. Again, we can only offer that for the folks who joined this webinar live today. So thank you very much, everybody. And I hope you all have a wonderful rest of your day.