Transcript

Maddie (Host):

And give it a couple more uh minutes so we can have some more people join us and then we’ll go ahead and get started today.

Okay, I’m going to go ahead and kick us off. Um, hello everyone and welcome to this installment of the noto partner engage webinar series where we bring you industry news, thought leadership, education, and examples of the impact of interoperability. Before we get started, I’d like to review a few housekeeping items. We will be recording this session and I’ll share the recording and the slides with all of you after this call. Um, please make sure to use the chat feature for any comments. Um, as all the webinar attendees will be muted and please don’t forget to use the Q&A feature. Um, I’m going to go ahead and quickly introduce our panelists today. Um, so we have Dr. Peter Shuck, our chief health officer here at NO2, Teresa Bell, our co-founder and president, and finally Matt Becker, our VP of interoperability. Um, thank you guys for joining us. I’m looking forward to the discussion today. So, without further ado, I will hand it off to Teresa Bell to get started.

Teresa Bell (Co-Founder & President):

Well, good morning or afternoon everyone. And for those that joined us the last time, I guess I’ll apologize for having to see us again, but welcome back. For those that haven’t, this is the looking forward to another exciting discussion today. I keep calling them our exciting first because over the last year and some we’ve had many exciting first and here we sit again today with another exciting first and it’s the ability for individuals to be able to access their information on demand and pull their own clinical information as and it’s a major breakthrough for our healthcare ecosystem. So very excited to be able to talk about it. But before we start, I thought we’d spend just a quick second reflecting on the phrase individual access services versus patient access services. And you’ll notice that it’s not called patient access because it really highlights the intent and the spirit of what we’re trying to accomplish by giving individuals or consumers, which Dr. Shak has educated me that we are really referring to in healthcare, individuals as and patients as consumers. And it’s really to reflect the spirit and the intent of individual access services. And that’s truly to give everybody control over their health information whether I may be an active patient or not at any given time.

Think about our financial lives. Imagine today I was thinking about this today is that if you either go to apply for a house loan or you’re looking to get a credit card or some sort of loan and you have to get access to your to your financial information. So, you may have multiple bank accounts. You could have a credit card. You may have a 401k and you have to go access this this information to be able to apply for this event. Imagine if you went to your bank or your banks and you showed up at their at their uh at the bank and said, “Hey, could I get access to my financial information? I really need kind of the last two years worth.” And they said, “Great. Fill out this form and in 7 to 10 days it’ll be ready for you. Would you like us to mail it to you?” And then you said you go to your credit card and you have to fax over a request for records and they say, “Okay, yep. We’ll we’ll send this back to you in three to four business days. We’ll have it faxed back to you.” And that’s the way you aggregated your financial information to attempt to apply for a loan. Of course, that’s not our world today. That’s completely preposterous. But that absolutely represents much of what healthc care feels like today for patients.

Now, of course, we’ve seen some access where today you can get access to certain parts of your record or certain providers have their clinical information available online through patient portals. But even accessing your information through patient portals, one you have to ma manage multiple login. Two, you may have to manage uh what parts of your records getting access. So, go back to that that financial example. If I logged into my bank today and I had access to my checking account, but I didn’t have access to my savings account, I couldn’t see that. That’s similar to what we can see with patient records as it as we’ve seen historically. They may get access to parts of their patient record but not the complete record or I may not have access to it at all through certain providers that may not be online. And that’s really the opportunity that’s sitting in front of us as a healthcare industry where on demand a patient through a single application that they’ve directed and they’ve been identity proof for can get access to their clinical information now and bring it back for different purposes that they intend it to be used for. Um but that is that is really the excitement of today’s discussion and today’s webinar is ability to get through this and what we’ve accomplished as an industry because we all know it’s been a long time coming and the group the folks on this call my fellow panelists have a long-standing passion and have been working hard to see this come to life today. So super excited about the discussion.

We’re going to break this down into three points. Uh first of all, we’re going to go through a little bit of history on uh what’s happened and the milestones that it’s taken us to get here today and then get into kind of the meat of what I actually stands for. what does it mean to have individual access services and reaching far beyond a PHR even though that is a great opportunity for patients to access their information and then what are the known challenges that we have left to to accomplish as an industry to work through with individual access services because we are just getting started. So, as we jump into this, um, we’re going to handle this format a little bit different than we did the last time where after each slide, we’re going to have open it up for discussion among the panelists. Uh, so as we work through these slides, I have encouraged our our panelists not to talk as much. So, it’s a little bit hard for those that listen to our our podcast. Sometimes it’s difficult to get a word and edgewise with these two. But, I promise you, we’re going to push through these slides and we’re going to have a great discussion. Exciting. And uh, let’s get started. So Maddie, if you don’t mind moving to the next slide.

So as I mentioned, it it feels like it’s a little bit surreal, right? So sitting in 2025 when we have I always say we have self-driving cars, we have artificial intelligence changing day over day, month over month, and here we’re still sitting talking about why can’t I access my clinical information as a patient, right? The the dichotomy is fascinating in 2025, but there’s many many reasons for it. and it’s been a a big mountain to overcome to be able to sit where we sit today. And that’s going to be part of our discussion, but we wanted to walk a little bit through history. So, as you see here, it’s not like it’s been a topic that hasn’t been discussed. It’s been discussed for two decades. And there’s been multiple milestones along the way that have enabled the opportunity that we have today to be able to discuss it. So for instance, HIPPA obviously that is a a fundamental change in health care that was required for patients because what HIPPA did besides all of the aspects to privacy and security of course is that it gave a legal and enforcable right for individuals to access their health information because prior to 1996 prior to HIPPA it was up to the state. There was no single legal enforceable way that a patient could say I want access to my health information. it was up to the state, sometimes up to the individual provider and so then it was kind of just a you know a mess on the national level and that’s what HIPPA looked to govern and bring some standardization to that.

Then we move on to high-tech move few years forward started in 2009 even though this was primarily a technology focused uh legislation. And it was it was primarily focused to the technology that providers use that was foundational to bringing that clinical information that was sitting largely in paper charts to that point because we only had teen level adoption, teen percentage level adoption in physicians and health systems of EHRs at that point and in other parts of the market it was in single digits if in some cases completely paper paperbased and without the requirements that we had to move into electronic health records which also then started started to organize how health information was collected, we would of course never be able to access that clinical information online. Going back to that financial example, it’s like your bank keeping all of your information on a on paper on a ledger, right? So, they had to get to basic foundation operational components to allow then that information to start being collected consistently and then also with meaningful use. And there’s lots of opinions on the value of meaningful use that we’re not here to debate that we’ll have that as a different podcast. Um but the value of meaningful use is that it it incentivized the sharing to a degree. It incentivized the sharing of information between providers with patients and with things like state health information exchanges which then patients could go access their records. So again not perfection by any stretch of the imagination but started to build the foundation towards individuals being able to access their information.

Then we fast forward the clock to the cures act of course and and really cures was a major stimulus forward not only for things like the tesa framework and for other for other initiative but really the patient was at the center of the cures act right so we talk about patient centered firebased APIs cures certified ehr technologies and underneath that again is another technological shift forward now with the patient at the heart of it saying hey all the data that you guys are collecting we need to do that in a standardized format. We need to make it available through actually firebased APIs that the patient can access and and start to build this again continue to build this foundation that we had for patients to be able to access their information. The the piece that was missing with with the cures act and with everything that happened before is I couldn’t do it at scale. Right? So if I was a patient, especially a complex patient, and I was going to go from one provider to the next, and I had multiple providers, or maybe I’m managing records for my child, I couldn’t do that at scale. I had to go log into the portals, manage my individual loginins, and if I was ever seen across the country or I moved, you know, there’s lots of lots of challenges that were introduced with this, but again, it was that necessary foundation to move forward to then what we’ve accomplished in TEFA.

So we bring forward TEFA. Uh obviously our very first focus with TEFA was around treatment and getting the definition of treatment under TEFA defined. Uh and then quickly moving into pushing forward on individual access which was really kind of a anticipated aspect of TEFA before TEFA actually even started operating that TECA was to be used for patients to access their clinical information and here we said today and that’s absolutely come true that TEFA has done that. But if and and go ahead uh Maddie if you want to move on to the next slide.

So as part of TEFA now that we have an acting SOP or a standard operating procedure for individual access services um it becomes really important to understand what does that actually mean and what does that mean for setting kind of that system free. So in looking at this uh this is where I’m going to open it up to uh my my lovely panelists that I have joining me today. Um, let’s go through. Matt, I’m gonna pick on you first. Uh, tell us a little bit about the definition. What is individual access services and when did it become a reality in TUKA?

Matt Becker (VP of Interoperability):

So, individual access services has been uh one of those long debated things that had to be defined pretty succinctly in order for folks to get started with it. And so one of the things with individual access, the definition really is is that uh an individual um an individual human validates who they are and has access to their medical record through anybody that’s joined TEFA and it is uh one of the required elements that health systems share data with those entities that are providing that that data back to the patient. Um, in that case, it’s usually uh an application in between uh that facilitates both the technical requirements and the operational requirements for how an individual gets access to their record. And there are specific pieces that we’ll go over in this presentation, but really that the the actual definition not only defines how the individual gets access to their data, but the protocols to which the individual actually proves who they are, that Matt Becker is the one actually requesting his own record and making sure that all happens through that transaction.

Teresa Bell:

Great. And and why did it why did it come to life in TEFLA? What was it about TEA that actually drove it? Because we have other national networks and so forth. It wasn’t addressed there, right? Why TEFA? Why now?

Matt Becker:

So, it was tried on the other national frameworks and it just didn’t hold water and it just didn’t gain steam because of the fact that there wasn’t this public partner private partnership that TUKA actually provides. So having HHS, having uh the office of uh the national coordinator for health IT, um all these folks involved given the fact that from a legislative perspective, individuals access to their own data from 1996 to HIPPA through the 21st century CARES Act to now has been a major priority that individuals get access to their data. they were able to uh leverage that and push that into the public partner private ship that is TEFA where the private kind of networks um failed to prioritize it in a way that got to the meat of individual rules that needed to happen to ensure the trust of actually getting access to their own data. there was a lot of barriers to entry in order to get that actually moving solved is this push to make sure that it was a priority figured all those things out and actually got it live.

Teresa Bell:

Great. And I think I don’t know if it’s on my side, but I think we’re having a little bit of connectivity issues uh with Mr. Becker. So unless that’s on my side, hopefully not. Um but real quickly, so I’m gonna then I’ll bring Dr. conversation.

Dr. Peter Shook (Chief Health Officer):

Yeah, let me just let me just just a comment on this regard. I think it’s I think it’s funny and I don’t know if it is a common uh misconception or perception in technology that we’ve solved for individual access. Let’s be honest. Back in 1920 when you were seeing a physician, you had access to your records and the physician was the steward of records and it was all your data and you asked the physician for the information. The uh the physician passed it on to whomever they needed to pass it on with your permission in order to care for you in that way. Right? whether it was under consent to treatment or individual perception. What we’ve done through this technology is actually and as healthcare became more and more complex, more providers were involved, society became more mobile, we saw people uh from different entities and all of our care wasn’t rendered by a single GP um in the town where we lived. It became harder and hard harder and greater and greater burden on the individual to get access to their individual records. And then when that uh all that data became digitized, there were new fears that HIPPA um addressed. But we’ve always had access to our data. It’s just become more and more difficult to get that data and because of the fragmentation in healthcare, the technology involved and to your point early on the differences in in in how states and and individuals providers dealt with that. So from a policy perspective, it was made easier with HIPPA. From a technical perspective, it’s been made easier with individual access.

The thing that excites me is again I see the patient in the middle of all this and and I think people can get tired of seeing patient centric stuff but the reality here is this is an opportunity not a burden. Yes, there’s a responsibility with having access to your records but what this has done is unlock it and make it easy and put the power I love the financial example that you gave earlier. It puts the power of getting and managing your clinical information in your in the palm of your hand just like your financial data. And I couldn’t think of something uh more important even than financial data is your personal health information. Um and and again I there’s a number of different uses that we talk about personal health record and so forth that we’ll get into. But um I I like it just because it puts the power back in the individual’s hands to be the curator, an assistant curator of their own record in a way that they choose to do so.

Teresa Bell:

I I think that really leads into um the heart of the slide that we see here on the screen and and we could go on uh we were debating on how many circles here to have on the screen because really accessing your clinical information can come from so many different sources and they’re continuing to grow. Um but being able to do that through a centralized way is individual access services as Matt touched on. What’s different about IAS than let’s say treatment of course is who’s requesting the records being the patient or the sorry I just caught myself individual the individual asking for their information but they’ve been appropriately ident identity proofed right they have to go through a very stringent identity proofing to make sure that they are who they say they are and then there’s a very specific workflow that has to happen as they access that clinical information.

Um, what I’d love to do is kind of walk through some different use cases because of course what I think conjures up in most people’s mind is they say, “Hey, a patient having access to their records, they immediately think of maybe an app on their phone, a personal health record on my phone where I go and collect everything.” And and for those that have listened to podcasts and have listened to me speak, I’ve been one of the biggest naysayers saying, you know, we think that patients accessing their clinical information is going to be this game changer in the health of this country, right? And historically, I’ve said no way. Right? Accessing your clinical information, yes, important. It the patient deserves that capability, but it’s not necessarily something that’s going to trend our health health differently in this in this country. Now, I’m actually backing away from that statement because of all of the technology and and and we’ve heard it said internally that really what individual access services does is provide technology providers the opportunity to actually change healthcare and also you take something like artificial intelligence. So, if I have an app on my phone and I go pull the information from the broader community and now I have instead of me trying to read through these records and figure things out and you know figure out the notes, figure out the lab results which that’s I I would never be able to do that nor would the average American be able to do that. We sit with an AI empowered app now they have the ability to start to understand their records but just as important how to take action and what to do to start to take action on their records. Um, so I want to open that up for parts of the discussion then, but also make sure that we touch on other applications of IAS that may not be thought about outside of the personal health record, but it really opens up the entire landscape in healthcare that sits out kind of outside of treatment and payment and the rest of the landscape for individual access. So, I’m going to open that up for either one of you if you anybody wants to apply on that for individual access.

Dr. Peter Shook:

I do have something I want to just I I do want to just start and delve into the personal health record a little differently because I too like you believe there’s probably about 5% of Americans that actually want to curate their own health record and we’ll take their entire health record from uh provider to provider to make sure that the care they receive is exactly what they think they need um in that regard and that that that is people with chronic diseases, complex chronic diseases, rare diseases, people caring for loved ones um with uh difficult diseases or disabilities. And there is a portion of the of the population that will definitely benefit from that. But now think about that with you mentioned AI and a couple other things. Now mention now think about a potential um virtual provider, right? Or virtual assistant to help you with your electronic health record. So now you’ve got all your own clinical data and now you have somebody who can pro some an app or a bot that can process that information answer questions for you related to that information pull pieces of that information and trend it so that you can actually have a much more understandable picture of your health and with AI you can make it a third grade level fifth grade level 10th grade level 12th grade level and remember healthcare literacy in this country is at about a seventh grade level um so it’s incredibly important powerful potential tool to overlay on a personal health record.

Now, additionally, that’s birectional. It’s not only interpretable of the data that you have there in that personal health record, but now imagine personalized customized fitness and health recommendations, lifestyle recommendations that don’t come from an app based on two or three questions you put in, but come from an app that you may answer two or three questions, but then it also pulls from your actual clinical data and your health data. Uh so it knows um what level of weight bearing you need uh post a surgical uh uh uh knee replacement or whatever and it actually tailors that to your uh piece and then it reads back the information you get in the improvement and continues to iterate on that. So personal health record takes on a completely different environment when you couple it with uh individual access AI um and uh the lifestyle management that you would want to do.

And I want to just say one thing. I’ll let Matt comment on some of these as we get into some of these other uh pieces. Uh but this individual consumer is an incredibly important pivot in terms of how we talk about patients. And there may be clinicians out there that still hold on to the patient um uh framework. The reason we changed that intentionally is you you have very little agency as a patient historically. You go to a doctor, you request an appointment, you get an appointment on their uh schedule or their time fee. You have no idea what it cost you. You can’t comparison shop effectively because there has not been historic transparency and pricing, etc. You don’t have a good understanding of true quality outcomes or consumer experience before you go. And quite frankly, decisions are made for you and on your behalf largely um and not necessarily uh you leading those decisions versus a consumer who walks into an electronic store and wants to buy a highdefinition TV. There is price transparency everywhere. There are five uh you know there are Google reviews everywhere or other reviews everywhere that allow you to understand every feature of the TV. What’s good and bad, what other consumers liked and didn’t like. um you as I mentioned your comparison cost you can go in you can touch it and you are the one making the final decision um and the person who’s selling it to you is only making recommendations a huge different thing the empowerment of being an individual consumer with individual access services versus being a patient where it’s very very difficult to get your records it it is it is historic in that regard and I think that’s why we’re changing now we’ll get into the use cases in addition to personal health record that that can illustrate that.

Matt Becker:

Yeah, I think from my perspective when you have complex conditions, these 30 15 to 30 minute hops from provider to provider uh from specialist back to your PCP where they’re not really with you afterwards leads a lot of against. So when we’re talking about things like what you’re doing after uh that visit and after those doctor’s recommendations to really affect your own healthcare, that cause and effect gets lost. So we talk about in the industry things like medication adherence and refill reminders and making sure folks are filling our fill rates and things like that are the terms and the catchphrases that you all know. But what really matters to patients is this idea of like trending and like cause and effect of your life choices on your own pieces of healthcare. And that just doesn’t happen when you’re seeing your PCP for a physical once a year or you’re going to a different specialist etc. Um and to Dr. Shook’s points, the idea of individual access is to put that power in your hands and how you actually share and use that data in your own day-to-day life to more bridge the gap with that cause and effect to make sure that the choices you’re making that can make a real effect on your own healthcare and your own life and then bringing that back to your next specialist appointment to your next PCP um to not only show your progress and how you did but be able to show that cause and effect to be able to make recommendations on your life kind of going forward. in that 15 to 30 minutes so that you can kind of make in incremental proc progress rather than going back explaining everything over again explaining the things that you did. You have it all right there.

Dr. Peter Shook:

You know, it’s interesting too, Matt, that you talk about that because I do think it also empowers patients to be a much more focused um informed advocate for themselves. And unfortunately in a complex health care system um it is it is very important that you maintain your own advocacy so when things aren’t feeling right when you can’t um uh get an answer to your questions that you actually have the information uh that can help lead to uh uh better advocacy and getting those answers. Trace I know you want to get into some of these other use cases. I want to talk about one just to seed the conversation if I can from the perspective of um uh you know just imagine that you are somebody who’s been diagnosed with a rare disease um and there aren’t uh uh you you’ve tried all the known cures you’ve even tried some off label uses of drugs based on what your providers uh said um or you have or there is no treatment for that disease. This empowers an individual to coales to to request their medical records, get a comprehensive picture of their medical records and if they wanted to could send it to a research institution to say do I qualify for the a research study in this rare disease, right? Something that is not permissible under the the the uh uh opaces of the treatment definition and shouldn’t be under the treatment definition from a screening for a research trial. uh but this patient can determine, hey, I want to send it out to these providers so that I can get screened to see if there’s a research trial that might be something I haven’t tried before. That’s an empowerment for a patient through individual access that doesn’t currently exist today. Um uh uh in the national exchange frameworks.

Matt Becker:

And the final thing I’ll say is that we just don’t go ahead everybody up for this. So go ahead. We we don’t know all the use cases yet. Uh by putting the power in the consumer’s hands, what we’re actually doing is unlocking innovation in healthcare. And we’re really unlocking the ability for the second tertiary data sources to be able to take those records on the patient’s consent and making sure that the patient is taken care of in the best way possible and we just don’t know all the answers yet, but we know the problem that we’re solving.

Dr. Peter Shook:

Yeah. And that Matt, I love the innovation piece and the best determinant and Tracy’s trying to get a word in edgewise. She talked Matt Matt she moderator job ever. She talked a lot at the beginning uh that we’re letting people into a family podcast I think is what we’re doing. Uh but but I I love the idea of the innovation but I also think too it’s it’s allowing the consumer to determine the value of sharing their records, right? Um and with whom they share their records. There’s a responsibility in that and there’s some education that needs to occur. Uh because once they share their records, they’re out there and and secondary to use all that kind of stuff. But it really puts that power squarely uh on the uh in the opaces of the individual consumer. I think it’s um I just going to pause there in case somebody else just kidding.

Teresa Bell:

The uh I I think what’s important in all of that is many of the use cases that sat outside of treatment, outside of things that we’re going through right now. some of the subpurposes of use for operations and payment they were never going to I shouldn’t say ever but it was unlikely that they would be resolved in in my lifetime which that’s growing shorter and shorter but like it was unlikely because there’s so many challenges with it as relates to privacy and it relates to some of these challenges so take like research what you’re saying Dr. Chuck trying to solve for HIPPA purpose of use of research in our previous ways of doing work where somebody would like say yes I consent and they’d hand off their consent to that research team and then that research team could call the you know health information management department and get their records over two two weeks later they show up. That’s an entirely different world than when we have a federated infrastructure where people can query for information on demand including research companies, things like that. And there’s a lot of there’s a lot of consideration and challenge that’s set around those. And so thus to Matt’s point, putting that back in the hands of the patient, it solves a lot of those use cases that were likely never going to be solved or have a real long path before they get solved in in this in the TECA framework and it puts it into the hands of the patient to say, I’m going to choose where my information goes, right? I’m going to choose what I’m okay with releasing. And of course, there’s education and we’ll get into that in the next slide that needs to happen with that. Um but it really does set the healthcare industry free for all the challenges and headwinds that we’re facing as a healthcare industry. Uh much of it can be solved and wrapped up here with individual access services as we see innovation. Imagine the innovation that will come around this and the technology that will come around being able to do this. So super excited for that. Um and as the moderator I’m paying attention to time but as we and Dr. Shuck, I keep telling your—

Dr. Peter Shook:

I just just on on that to put a finer point on that as well. Nobody I I say this all the time in healthcare. Who wants to call their primary care physician and ask permission of somebody who just graduated high school, my front office staff to come see me sometime between the hours of 9 and 12 or 1 and 4 when it’s convenient for me. Nobody wants to do that. That’s not the way anything else in our life is done. We still do it in healthcare and it’s crazy. This does not require anybody’s permission for you to use your information in a way that you think benefits you in that regard. Um, and really it’s open in terms of the creation of the app, whether you’re advocating for yourself around prior authorization and those kind of things, whether you’re advocating for yourself uh for research trial or whatever it is, which is uh which is unique, whether you’re using it to improve your own health and your your own care plans. So, I I know we’re getting short on time, so let let’s keep moving.

Teresa Bell:

Do you Well, I’m gonna I’m gonna actually go back to um highlight something that Matt said here that I I think is important because we we have a we have an internal debate. It’s a debate we’ve we’ve had ongoing as it relates to that second that second bubble is send my information to my providers. And I I have a personal example of this with and my everybody’s heard me talk about it probably at this point with my dad. recently, less than 30 days ago, was hospitalized again and for some unknown reason, the hospital uh could not retrieve his records from his neurologists and other care providers that he was participating with. Um, and so they wanted to get access to the clinical information as quickly as possible. So I had to work through a website of a it was this kind of generic website of requesting records and it literally took me through 17 screens to request the records to come to the end to say for an urgent request by the way I checked that box and made sure I checked that box for at the end to say hey uh we’ll get this to you in three or four days meeting our urgency requirements we’ll get we’ll get this to you and you or do you want it to send to another provider and if you have anybody else you want to send us go back through the whole process again if you have the next person you want to send it to cuz I wanted to send it to the hospital and to my dad’s neurologist which basically behaves as his PCP I wanted to send it to both and it took me 34 screens to get through the access to that information to distribute it and in that case the debate we’ve had internally is that that’s really still a treatment problem right the provider should be able to ask a access information on demand anywhere and be able to pull that information and that is a problem we continue to tackle as a separate work of effort. But what Matt highlighted is the ability to progress those visits as a patient. Right? So it’s not only about facilitating the movement of my information, which is a between providers, that’s a treatment problem and that needs to be solved as a treatment problem. But now for a patient to access it in between and do something with it, action on it, make it better, follow through, and then provide that and be able to measure the outcome. That’s that’s power. And that’s not something that has been done historically because you leave your doctor’s appointment, who remembers it, right? I don’t, you know, that’s like WW, you don’t remember all that stuff that they tell you to do. You take the medication. Sorry, Dr. Shock. Um, but it’s really an exciting opportunity. So, I wanted to highlight that.

And then maybe we could just touch on although we’ve kind of circled around this one a little bit, but the opportunity to share this with third party apps. So, we talked about research as as one of those examples. uh what other examples can you guys bring to mind? So if I as a as a patient I pulled my records back and I access them and now what we know through some of the partners that have actually integrated to our IS services that we’re bringing live they have the ability to choose who they want to distribute all or parts of their record to as approved downstream that’s critical because the patient has to approve it downstream receivers of their information. Give me some examples of other other types of applications that you could see here.

Dr. Peter Shook:

I I think they’re as broad as your imagination to be honest with you. I mean, which is pretty narrow.

Teresa Bell:

Well, yours mine’s pretty broad.

Dr. Peter Shook:

Uh but I I think I think when I think about how many wellness apps or how many apps are coming across the app stores on a daily basis or a weekly basis that are being developed to offer some semblance of health and wellness to individuals. Imagine how they could be empowered with individual clinical information to make much more personal recommendations uh again on a wellness journey, a fitness journey or a a health journey uh in that process. Um and and I separate those out only because there’s stages of disease or non-d disease and recovery. But um so I think there’s one opportunity there. I think about things like um life insurance, good and bad uh components of that. I think about things of workers comp or legal uh uh implications and so forth and and and the timeliness of being able to get those records and advocate. I think of things where you’re actually sharing with a payer information that’s very hard for them to get because you’re advocating for yourself for um uh coverage of a um uh medication or procedure for an uncommon disease state. Um, I actually think I love what you guys said about how you point out what Matt was saying about progressing care and not just the sharing of records at the point of care because I think that’s the the lowest common use of individual access. It shouldn’t be something that a patient has to carry their record to the doctor. Um, we’ll solve for the doctor having your record. This is about what you can do with your information um uh above and beyond um uh what that is. And then I I I think about the birectional the the idea of reciprocity here which is the thing we’ll get into in the barriers but imagine being able to share curated information back to your provider around uh your fitness schedule your blood pressures your home monitors your glucose those kind of things which can be done in a standard way uh through IAS in some cases. I know there are barriers to that. Matt Matt knows those technical barriers a lot better than I do but but we’re getting there. It opens up the possibilities um to think through that and what’s valuable there.

Matt Becker:

So I think it also puts us ahead of the curve in terms of what future use cases are going to look like or even present use cases that really haven’t been adjudicated. So things like behavioral mental health um are big ones in the fact that like if I want to share my record everywhere um it’s still not going to be shared everywhere because of certain aspects of my health record aren’t going to move with me um because of 42 CFR part two and some other laws that are in effect. Um, and and really just like even next level treatment like food mix. Um, if I’m uh doing things with a social worker, things like that that are really going to help drive my own mental and personal health um outside of the traditional four walls of a health care system. Putting that in the power of my own hands allows me to take that when those uh the pipes for connectivity between those may or may not exist. And so like I can guarantee it exists 100% of the time because I have my phone.

Dr. Peter Shook:

Matt, I I love what you mentioned though about behavioral health because um uh will there be do we anticipate will we be advocating for differences in release of that restricted information to an individual verified versus a healthcare provider, right? Because there are some limitations in how that’s shared uh now that may not have to be limited if I’m sharing it back to the individual because they were present in that counseling visit, right? So, their counseling notes are are something that’s known to them and might be beneficial as they choose to share it with a different provider, different person, etc.

Matt Becker:

Yeah. And consent management is hard. Um, but the idea of you requesting your own record and just basically consenting to that in the moment, that is a guarantee of consent of no, I consent to you sharing the record with myself, too. And so, you can skip behind all the barriers we’ve been working on for years and years in terms of consent management in order to get that record yourself.

Teresa Bell:

So, it sounds like you guys are uh you guys are painting a fantastic world. So, man, everything must be perfect with IS. Is that accurate? We’re we’re good to go. It’s 100% perfect. No. Okay. All right. Let’s let’s get into that. Great discussion and uh hopefully we’ll get some good feedback from that. Uh Maddie, let’s go ahead and move on to next slide.

So, as mentioned, um individual access has been in the works. all the foundation everything that’s been put in place a lot of thought a lot of consideration a lot of complexity uh so when I give the example of the financial institutions a little bit tongue and cheek because it doesn’t represent nearly the same complexity that we see in US healthcare um and I I say it just to represent what the world should be like uh but we have a lot of considerations and still a lot to come so we’re just getting started the industry is just getting started now with federated individual access meaning now we have it in place we technical framework in place. Uh but we really want to touch on some of the challenges that we have we know are sitting there uh as part of key challenges to overcome. So Mr. Becker, I’m going to I’m going to pick on you first here as you’re welcome. Um talk to us about some of the the obviously there’s a tremendous amount of privacy and security risk. We could be here for another three hours if we if we touched on that. Um give us some highlights on things that are that are being discussed around that.

Matt Becker:

So from a high level to to just a lower level high level on on security and privacy risks. Um number one just acknowledging that um there’s going to be a limitation. The fact that some of these protocols we’re using to actually um verify that you are who you say you are only applies to you. Um and so things like proxy access and and you know power of attorney and all this other thing all these other things are things we need to iterate on in IAS. I think the other privacy and security risk is really um trusting the application that it sits in the middle of you uh having access to your personal health records. And so, um I don’t read the terms and service of Apple when I get a new iOS system. Uh I just click agree. Are patients going to do that when it comes to these health records and things like that? And so one of the things that on a TUCA policy side we’ve done a lot of work on is set the the rules for how privacy and security actually work in a tough world that add on to the basic things that the FTC has said that apps need to do. So holding them to the standards of HIPPA is a new piece of of uh policy technology essentially that we’ve had in in uh in the TUCA world. In addition to this idea that folks have to very clearly state their privacy rules in terms of these building these apps and things like that. So we’ve iterated on these processes in the future. Um nothing can really take the place of good judgment either. And so really making sure um the the health systems are are typically concerned about making sure that those are uh transparent and making sure that folks uh understand what they’re downloading and sharing when they do. But at the same time, uh, a lot of those have been worked through, uh, in in TEFA policy, and it’s up to the patient to make sure that they’re they’re actually taking a role in not only ensuring that they’re getting their health records and what they’re doing with it, but also the privacy and safety of that as well.

Teresa Bell:

Great. And Dr. Shook, I don’t know if you want to add anything there, otherwise I’m going to move on out of interest of time here.

Dr. Peter Shook:

Yeah, not on that. I was going to move on to complete record set and write back a patient data and those kind of conversations because I do think one of the challenges is that um and this Matt knows this well from his previous life uh around the open notes project uh uh in the early 2000s or uh 201 um we speak two different languages. Uh providers and patients speak two different languages. Um the the the purpose of the medical record was to speak to myself over time uh around a patient in a language that I understood which is all the training that we go through um uh uh med school, residency uh uh fellowships etc. And it was to speak to other professionals in the field who spoke the same language. So many times there are things that can be difficult to interpret which is why I think AI is so valuable here. Um, and when I talk about the healthc care literacy in this country being about the seventh grade level, that’s a um, generous estimation. There have been some studies that indicate it’s lower than that. And that’s not to be demeaning at all, but it’s to your point of wa when the doctor talks. It is it is there’s very little of what we say that’s truly understood and ingested in the context of a 15 to 30 minute visit, especially with all the fear, anxiety, and everything else that’s going on. This provides the whole record for them to digest, but it’s not in a language they clearly understand. And quite frankly, there may be things recorded that weren’t translated in the same way to a patient. And one of the big ones is always morbid obesity versus lose a little weight, right? Your provider tells you to lose a little weight and you’re going to get a record set back that says morbid obesity. And it has to do with because the BMI is above a certain level. and um we didn’t think it was necessary to pile on and say you’re morbidly obese but just to say lose a little weight here’s the diet here’s the exercise plan so I think there’s going to be some some interpretation there and then the other pieces around reciprocity right back patient data I think there is value in patient reported data how we distill that value how that gets presented how that gets ingested in the uh EHR so that it doesn’t become noise for the provider and misinform the provider um will be incredibly important to understand um as we go through it. But I think there’s value there from a clinical uh perspective before—

Teresa Bell:

so before you open that one I was going to I was going to cut you off there but that the complete record set let’s go back to that because I think there’s multiple aspects in which we can look at that. So um one as a taking it from kind of a holistic perspective if I go see a provider what part of my encounter or part of that you know particular episode depending on how it’s termed based upon the care setting do I have access to? And then what part of my entire record with that provider do I have access to? And then I go across the ecosystem. I get asked all the time is so if I go through individual access services am I going to be able to access my entire record across healthcare? No, that’s not today because that’s the problem we’re solving. So in parallel, keep in mind we’re solving the treatment problem where we have significant portions still of the of the healthcare ecosystem and providers for multiple reason including they were never incentivized to be on the national networks and they’re getting on the national networks. They’re bringing it forward. They’re normalizing their data and then we have aspects that are they’re certified technology. They’ve been out there for a long time, right? And we’re quickly looking to solve that problem. But during the meantime, you’re going to get access to the providers that are online today that are that are making their individual online through TESA to make sure that that’s clear today. Hoping to solve that problem over the next it’s going to get better day by day, week by week, month by month as more and more providers come online. But today, you do not have access to your complete patient record set if you’ve been across the continuum. Now, if you’ve seen a PCP, you’ve been to the hospital once, you’ve had a light, you know, kind of a light history, you probably do. But depending on the complexity of the patient, your age, there’s a lot of um lot of factors here. Those record sets are coming online over time. Um so there is some those are some challenges again that’s actively being solved. Go ahead, Dr. Shaq.

Dr. Peter Shook:

No, I was just going to say I think I think there’s a lot more records available today, however, um that make IAS real today for patients. Absolutely. there are certain parts of the health care ecosystem um uh that we serve and are actively um getting online um that I think will broaden that out. But I think um and and quite frankly for people who have complex uh clinical histories probably more of their record is is is online right now uh or available online right now because that meant you were served at a hospital or you know an inpatient facility for some period of time. So I yeah I I think it’s a I think it’s a really good point. you will get the records from the people who are connected and our job is connecting everybody. Um, and I think that we’re making progress on that on a on a regular basis.

Teresa Bell:

Great. So then, um, Matt, I want to touch on just a little bit getting to the the SOP uh, for individual access here for reciprocity. Let’s combine reciprocity and write back of patient generated data. What’s the requirement in the SOP and what are some of the exceptions that may sit around it?

Matt Becker:

Yeah. So, in general, um, the idea behind TEKA is is one of reciprocity is that if you’re sharing, if you’re getting data, you’re going to share data back. That’s the incentive for everybody to play by the same rules. That’s the incentive for everybody to join the framework. Um, that doesn’t stop with treatment. That applies to individual access as well. um and making sure that those records are available upon patient consent back to the the broader TUKA community which includes uh hospitals, stale nursing facilities etc. And so the idea behind reciprocity as it currently stands is that the applications have to have the ability to send back data to the broader tough cut ecosphere. It is going to be up because this is outside of HIPPA. This is not an automatic transaction. It’s going to be up for the individual patient to say, “Yes, I authorize my my records to go back.” But at the same time, the technology needs to be there for the patients to opt in and say, “Okay, I want, you know, my individual medication adherence records, whatever you’re collecting on me to be able to send back.” It’s not this we’re going to gather your record and then just send the records back to the people who sent them to you in the first place. it really is that new uh data that you provide as a patient that we want to make available uh upon consent uh back to those those healthcare institutions.

Teresa Bell:

And so really important distinction and then I’m going to I’m going to turn this clinical for a second and ask some questions around that. Dr. Shuk, uh really important distinction and difference between treatment and individual access, right? So both are built upon the same TEFA infrastructure. The difference being is you can query for patients records. You can query for a provider can query for a patient’s record to to another provider setting. In the case of a provider to provider under the purpose of use of treatment, it is a required response with a complete data set. Right? Required response back for care coordination, they have to give it back to that provider. In the case of individual access, if you are generating new stuff, I’m just going to repeat what Matt said, is if you’re generating new clinical content, it is a required response by the technical framework, but only if the patients consented to send it back because it’s not covered under HIPPA. So, it’s different. And that’s an important piece as you’re looking for the for the technologist and the audience. And we really do try to represent um all the audiences that we have on the phone from an audience from a technical perspective things really to consider as part of that and and what to consider. Dr. Shuck, from a I I think you were going to say something though, so I’ll pause before I ask you a question on the clinical side. Go ahead.

Dr. Peter Shook:

Go ahead and ask a question, Tracy. Go ahead.

Teresa Bell:

I I was going to just say if you look at all the all the places that we create patient data today, patient data, we probably should call it consumer data by the way. um just to continue to uh perfect our language, but consumer data, so Fitbits, my fitness trackers, my Garmin, you know, what’s on my phone, there’s there’s many different areas and including some engagement back in applications for progressing, as we talked about before, progressing of CL of of my uh conditions forward. What’s valuable to you? When does it become all too much? And what’s valuable to you as a provider? And I know that’s a really broad question, but just give me kind of a general sense to that.

Dr. Peter Shook:

Yeah, I’ll give you a general answer because I think it’s true whether you’re getting information for treatment and delivering uh receiving information from treatment across a network or you’re delivering information back from an individual uh app of consumer reported data. I think the reality of it is it is context specific um and um uh time quantity and trending specific. So, in other words, I don’t need 2,000 blood pressures over the last month from a app where you’re taking your blood pressure every day as I don’t need your heartbeat um every hour every day uh as you go through it for the vast majority of things. What I need and I think it allows from a perspective of uh Matt’s comments earlier, it allows innovation on the app um side to build, hey, I know for X diagnosis, these are the valuable things that clinicians want to see. I can bundle your information that you’re capturing in this way and send them your trended hemoglobins um uh fasting and and two-hour postprandial uh to understand how your uh uh diabetic therapy is actually going uh even before you get your A1C. I can send blood pressures morning uh after exercise whatever it is. I can send your heart rate from these samples post exercise, pre-ex exercise. So it’s actually getting contextspecific information that’s relatable to a diagnosis. And it to me it’s no different traces than the conversations we’ve had about um about treatment where I say don’t give me more data as a provider. What I need is information. I need that information in the context of an individual patient with their diagnosis, their medical history u in front of me in my workflow so that I can make appropriately timed decisions. I don’t think it’s any different with the information that we put back from an app which gives application developers a responsibility but also a real opportunity to differentiate themselves in terms of how they uh go to market with individual access um uh applications uh to be able to provide the opportunity for patients to report back um or consumers to report back uh uh uh their own data um and I think that’s a really neat opportunity quite frankly um and a really neat area of innovation that will drive significant clinical value.

Teresa Bell:

I would agree and I I think that just out of interest of time I’m going to kind of summarize it here in that the value and the veracity of the data both to the patient right and from the patient back into the the larger healthcare ecosystem lot of thought lot of opportunity and thank goodness AI is here because it’s it would have been a really really tough challenge and it has been a really really tough challenge for us to overcome on getting the as Dr. Chuck always says getting the right data for the right patient into the right workflow um at the right time and that’s that’s not a that’s not an easy equation right to solve but we have a lot of technology now that’s making it much easier to solve and push forward with. So Dr. Shuck maybe I’ll have you looks like you’re going to say something and maybe you can wrap it up with patient and consumer education and then we’ll open it up for questions. That’s a really—

Dr. Peter Shook:

Yeah, that’s a really uh hard thing. I was going to actually because we were at time I was going to actually go to the question that James Baitman asked in the chat because I thought it was an interesting question. Um, it probably requires uh some uh uh opinion from Matt and yourself as well. Um, so his question really is super interesting. What if the app something like My Fitness Pal that does meal logging? Are they going to report um the meals back to uh back to the network or my clinician? Well, right now that’s not part of a standard record set um uh that would go back, but you could see value in being able to report the content of your meal, the caloric content of your meal back to a provider who is providing um uh treatment for diabetes um or for weight loss or those kinds of things. And again, given what Matt said about how this individual access is designed and differs from treatment, the individual consumer would choose if that was the information they wanted to share back or not. Uh right now I don’t think there’s a way to get that back in a um uh discrete fashion. So it would probably come back if it came back in some sort of a PDF or unstructured fashion. Uh but I could see a potential use for that.

So the patient and consumer education just to close that because you asked me to say something about that. I think touched on it with the ongoing uh privacy and security risk with uh and Peter Parker’s dad said it the best. With great power comes great responsibility. Um, and we’re certainly empowering individuals with access to their uh, clinical record, but there is a responsibility that comes with that. And I like Matt, I don’t think I’ve ever read a term of service um, on any app I’ve ever downloaded. I’m sure my data is everywhere. Um, uh, because of that. Um, and when they click share your data to make it better, I usually do that, too. Um, so the the question is, how do we educate consumers that now they’ve got their clinical record sitting on their phone? Uh, they probably ought to do things like password protect their phone a little bit better. um all those you know all those simple little things actually read the terms of service clearly understand what information is able to be shared back understand how you click it how you control those privacy settings in that regard as well um so I think there’s a a fair amount of education that needs to occur alongside of this um some of it is incumbent upon uh us in the interoperability industry um some of it on the network and a lot of it on the application providers um that are actually uh accessing that data um and providing those terms of service to the individuals, but I’d love for you guys if you have anything different that you’d want to say.

Matt Becker:

I think it’s really going to be up to the application folks to really figure out what format makes sense for your data. I think the My Fitness Pal example is a really good one. No, you’re not going to want to provide back a huge PDF of every meal I’ve had since 2007. What you’re going to want to provide is if my if correlating what my actual doctor’s prescription is in terms of what my um what my dietary restrictions are, what my dietary plan should be, and comparing that to the app. So, if they want me to stay away from simple carbs, maybe that’s the count we we provide to the provider. If it’s a count caloric day by day over under a certain number, that’s what we provide. And that there’s going to be some some innovation and some real thought that needs to go into that before you just jam-pack a bunch of information back to our provider. We need to make sure that we’re providing the right data back.

Teresa Bell:

And that’s on both sides, right? I mean that the application needs to figure out the format that is most meaningful but then it can still come unstructured because right now there’s no mechanism to receive you know uh uh percent grams of carbohydrates per meal or uh total caloric intake um into an EHR. So h how do you how do you do that effectively as well?

Dr. Peter Shook:

Um I will tell you that I’m still comfortable looking at unstructured data um and incorporating it into my decision- making um if I’m not filtering through thousands of um documents in order to do so. So, um, yeah, it’s, uh, really interesting. And imagine that you just could share back an AI narrative of the last month of your, um, fitness journey. AI is looking at all the data in your app and it’s giving a, this is a, you know, Mr. McMahon is a 50-year-old guy that has diabetes, etc. Over the last month, he’s been very good adhering to his diet. He’s been on schedule with his medications. His blood sugars averaged X, Y, and Z, and you’re giving a check-in to your provider on a regular basis. Um, imagine how that might decrease the need to see the provider and the inconvenience of seeing. I mean, just so anyway. All right. I know we’re at time. Teresa, you gota got me.

Teresa Bell:

There’s so many things I wanted to say right there. You know how refrained I’ve been all um other than now I’m hungry given that I’m going to go set my glucose monitor off and take a nap. So, um, all right. This has been a fantastic discuss discussion. Uh, look for more of these. As I had said, there’s a lot of lot of activity happening um on the interoperability stage, the national stage. We’re having a ton of fun. It’s also a lot of hard work. Clearly, there’s a lot left to overcome. Um but look forward to the next discussion. And then I’ll hand this back to Maddie for any final housekeeping items.

Maddie (Host):

Yeah. Thanks, Teresa. Great discussion, guys, and everybody on the call. If you enjoyed what you heard today, um you scan the QR code here. We recently um released a podcast with Teresa, Dr. Shuck and Matt Becker um where they do dove a little bit deeper into IAS. Um and Jeff just dropped a link in the chat uh for you guys to go uh listen to that podcast. Um and we’d love to hear your feedback on that, what you liked, what you didn’t like, and things that you’d like to hear in the future. So appreciate you all joining today. Um I’ll email out the uh recording, the slides, and then keep you in the loop for our future uh webinars. Have a great day. Thank you everyone.