Is 2026 the Year Patients Finally Own Their Data? | The 229 Podcast with John Helvey

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Is 2026 the Year Patients Finally Own Their Data? | The 229 Podcast with John Helvey

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[00:00:21] Find out more at harmanhit.com. Hi, I'm Sarah Richardson, principal at the 229 [music] project and a former healthcare IT executive. I spend a lot of time in rooms with the leaders shaping this industry at dinners, roundts, and events across the country.
[00:00:41] And every so often, someone says something that stops the whole table. You can feel the room shift and everyone leans in. That's the conversation I want to keep going. Welcome to the 229 project podcast. Let's get into it.
[00:00:55] Well, welcome to the 229 Project podcast. I am thrilled to have John Helvy with me, the CEO at Sack Valley MedShare. And John, we met at the Sacramento City Tour dinner back in April of this year.
[00:01:08] Yeah. Yeah, it was a great event. Got invited by my in-law colleagues to go down there and see what was going on and yeah, it was an awesome event. Good. We'll be back next year for sure.
[00:01:19] And I was just fascinated a by the background you've had as a CIO, but also your five plus years at Sack Valley and digging into the H.IE space in California and beyond. And I really want to touch on a lot of that today because regional his have been around for decades. I'm curious to share with our audience what's changed in the last two years that makes the model work better or what's made it harder for you?
[00:01:44] Well, there's more interest in health information exchange. there's more interest, there's more use of data. So, that is a very strong plus for our industry. So, but I think one of the complications is nobody really knew or knows how to really maximize data flow or interoperability. So, we're always throwing new mud up against the
[00:02:09] wall to try to figure out is there a better way, is there a better way, is there a better way? And as regional HIES, even statewide HIEs that have to interoperate outside of our geographical confines, we wind up having to go down rabbit trails, right? So we get a little distracted. we get distracted with oh national networks and now TEFLA and then
[00:02:35] we're always sitting here you know working with the end users the participants the local the people that we know and support within our region trying to maximize the data return we have tons of customers or our participants have tons of customers that go down to Florida for vacation right and what happens is they get healthcare down there. Well, we as a
[00:03:02] regional HIE have no need to connect to Florida hospital. And then when you do a national network search, there's there's things that aren't really transparent like geo fencing, patient matching algorithms, how how does a how does a successful search from Sack Valley Medure in Northern California happen in South Florida? And there's no real
[00:03:27] recipe or prescription for that. So it's complicated and uh patient matching algorithms are different across DMR vendors and HIES and so we go out there and we do this search and don't get any return and we have to wind up doing multiple searches to try to find data and get the maximum return. So it's complicated. Everybody thinks that all the national networks they just it's
[00:03:51] just this broadcast out to Google and Google returns your query back, right? I mean, whatever you ask, Google, it returns you back something. And we're supposed to be the Googles of each of health information. And it just it doesn't work that way yet. There are huge strides forward. We're making great strides forward. And I think it's going to change over the next 5 to 10 years.
[00:04:14] It's going to get better. There's a technology called Fire and that's going to hopefully make things easier. Um, but that's still complicated because you know in California alone there's 7,500 care quality endpoints that that you could query and when you go nationally it's even going to get broader. FIRE is going to be nice but it's going to be also still complex.
[00:04:39] Well, health systems they often don't support data sharing in principle unless it requires them to give something up. How are you navigating them wanting to participate? Great partnership with the Medicaid payers. I think is a great, you know, partnership health plan has been a rock solid foundational supporter of Sac Valley Medare. Um, I think they got it right with interoperability.
[00:05:02] Another one is Inland Empire Health Plan down in Southern California. They incentivize their participants to participate in regional, local, regional health information exchange. And so they're incentivizing data flow. I think without that that it's a it's a big lift. Everything everybody thinks that you know our EMRs have everything and
[00:05:27] the national networks have everything and you know we have examples. I have a staff member that's an example and he'll tell you that his data when it goes beyond 75 miles doesn't really exist when it's queried.
[00:05:41] And even in systems that say that they're connected and that they have that data because it's a like system, they really don't. There's a process.
[00:05:50] There's a there's a whole workflow and a process to make sure that that data flows. And many times that doesn't that doesn't happen. Um, and those are real life case examples of, you know, why there's a real need for for health data in our region, especially because we're a provider shortage area.
[00:06:11] So provider you know staff or not staff but you know consumers are going to wherever they can get healthare. We know that consumers travel from say Yubis city all the way up to Trinity to get health care. I mean people are traveling two three hours to get health care because that's where they can get in or that's where their family doctor is. You know, we've got remote we got remote workers who are, you know, they live in
[00:06:38] Lassen County and they work in, you know, Bakersfield. I mean, so they're they're getting health care wherever they are for that extended period of time. And we've got to make sure that that data flows. And I think regional health information exchanges, especially in California, that it it works well. we can work together with each other to make sure the data patients data is where it needs to be when it needs to be there.
[00:07:03] And when people listen to us thinking about the space in between three, four or five hours, you know, California end to end 14 to 16 hour drive if you were to go from Chula Vista all the way up to Oregon up to the, you know, Crescent City area. But often in other parts of the country, you're crossing state lines. You're going two, three states or more away to get some of the care. What does the workflow for something like
[00:07:27] that look like? If I go and present, let's just say I go down to San Diego for care, which is a good 10-hour drive from the Bay Area. How does that health system query my information using the exchanges that are available in California?
[00:07:44] Well, you can you can do a national network query which says, you know, but it's all going to it's all going to depend on where does the patient say that their address is, right? if their address is up in, you know, Chico, California, and they're down in San Diego getting care, they can do a national network search and and most likely if they're putting in that address and there's a patient match, right? Then the the the systems that are
[00:08:09] on Care Quality or E- Health Exchange, those are going to respond. The problem is making sure that everything matches and the patient matching algorithms fit. Otherwise, San Diego has a great H.IE down there and San Diego Health Connect. San Diego Health Connect and Sack Valley have a connection between each other. So, we can query one another. Um, we also have
[00:08:34] an arrangement where if the a consumer was admitted to the ED while they were on vacation in San Diego, that consumer is on you, our provider panel's up here and we provide that information to San Diego. San Diego alerts us and then we alert the provider. So that's what the data exchange framework is doing and and has done so far and helping us work together um as HIES in California to
[00:09:00] make sure that our providers are knowing what's going on with us and and it's not like oh I didn't know you were in the hospital. No, we're we're we can let providers know that their consumers were in the hospital when we got great people like San Diego Health Connect working with us at Sack Valley Media to have that data flow. When you step away from that specific example and you consider that I mean you are at the center of
[00:09:23] data exchange across multiple health systems and hiees what is the gap though that you see between what interoperability supposed to deliver and what it's delivering for patients and providers right now I think that we need to have a little bit more push more push technology right less query and respond more push technology and greater partnerships amongst regional HIVs
[00:09:47] many providers. So when you're quering these national networks or when you're putting out these broadcast queries, they take a little bit of time. Number one, it takes time. Do I have a patient match? Yes. Well, is the is the do I have documents for that patient in our in our data system? Yes. What documents do I have? I have these documents.
[00:10:09] Return those documents. Here's what I have. What do you want? That that takes time and process. And we have come to a day and age where everybody is if if I hit enter on my search, I need it to be there within like 3 to 5 seconds. I mean, what's the average response time to Google? You put in a search, it's almost like you blink and the data is there, right?
[00:10:33] And we've and we've become so accustomed to that level of response with everything else. the complexity of where data lives and how data comes together.
[00:10:44] It takes a little bit of time and people just don't have the patience for it anymore. They want to hit the button, have it appear, pick their document and move on. And it takes some time. It takes sometimes 60, 90 seconds for what is available out there to even appear.
[00:11:00] And then when you click on that, now we've got to go out across the networks and we got to fetch it. We got to bring it in here. And so the cloud world has made that a lot better because we're able to navigate the cloud way better than we were standard techn networking technology historically. But it's still, you know, people don't like waiting 60 90 seconds for an answer.
[00:11:23] Unless you're using cloud code. As soon as you start using code, it does it goes and asks you quite a bit. Then you have all the token usage as well. This is more of a query. But these queries again are made by the clinicians or the health agency. What about patients who want to start to aggregate their records that are available through an HI connection?
[00:11:44] There's many ways that they they could do those types of things. We are exploring at Sack Valley Venture. We're exploring how do we how do we get data digitally to consumers. There's cost associated to that, some recurring costs. us being nonprofits, you know, we don't, you know, we don't take a lot of investor dollars and and you know, we keep a pretty tight budget. So, we're fig we're trying to figure out ways in
[00:12:08] which we can do those offerings. I don't ever anticipate it being absolutely free, but you know, there's other ways that people do it as well with Apple Health or there's new thing individual access services. So IAS, right, that's going to be on TEFA and it's playing out on TEFA right now for that to be a way to get your data. But these individual applications are really what's got to
[00:12:33] store that data. So we're exploring that. We're we we look to evolve that. We I really want to have the consumer data in their hands, but there's also complexities to that, right? We've got to do identity verification. And we've got to do all these different things to make sure that who's asking us for the information is really who's asking us for the information. And because we
[00:12:58] don't want to have breaches, we don't want people to wind up getting data for other people that they really shouldn't. I recall when we first started getting into some of the interoperability and sharing, this is more than a decade ago, it was matching on at least the criteria of five. And to your point, to do that effectively, it's it's a time consuming inquiry, but also how do you get that back into the hands of the right people?
[00:13:22] Because there's common names. We have 40 million people in California. I mean, the commonality of some names is pretty significant. What is the right algorithm or way to check to verify whether that's con a consumer getting it from the HI or HI to HI? How do you how many matching criteria are there now for what you present at Sack Valley?
[00:13:44] Well, we we have an EMPI, so electronic masturbation index that that goes through a ton of algorithms and it looks at as much data. The more data you can throw at it from a demographic perspective or information about the consumer, the better the match is. But there's also those common names like Smith, right? So when you say John Smith date of birth, you know, 12455 and then you go and he's a male and he
[00:14:12] lives in this zip code, there could be multiple John Smiths that live in that zip code. We have a number of people um like even in the Santa Cruz area where there's like seven people with the same name in the same zip code and the same sex and they uh several of them have the same birthday.
[00:14:35] And so it's like you have to go to you have to go beyond that and you have to add that additional data in. And so we're getting referential data in now that also helps us.
[00:14:47] you know that still has gaps as well. I mean um so it's complex. It's complex but the more data that we can get the better we can match. When you consider some of the most important decisions that you're routinely making, especially around interoperability, what would you say in the last 18 months has been the most significant breakthrough or contribution?
[00:15:06] We have we have moved off of an um an a legacy platform to a new platform and we call it California Care 360. Being able to have that discrete data now be able to be readable. We can parse it.
[00:15:24] We can put it into our data warehouse and now we can present it in a way that can actually be consumed better because the last thing people want to do is they want they don't want to go through a 50-page document and look for what they want. They want to be able to say I want to look at diagnosis. I want to look at procedure codes. I want to look at labs, rads, and allergies and meds. Those are
[00:15:51] the some of the topics that they want to look at. So, in many ways, we can now present that back where we don't have to return the whole 51page document. If that's all you want is you just wanted labs, meds, and allergies, then we'll just return that to you instead of everything else. And then if you want more data, you can always log in. our participants can always log into our portal and they can look at as much
[00:16:15] data as they want on that consumer. Um, so we're really it's, you know, we we created our own tagline taking data from movable to usable. It's not about moving data and having data interoperable. It's taking that interoperable data that's flowing now and making it usable to the to whoever is consuming it. Whether it be the provider, whether it be an ED, a nurse, an MA, somebody a case manager,
[00:16:42] somebody trying to work with a person in the community for, you know, a dietary perspective. So, whatever it is that they're they're doing, we want to present that to them. Like one of the things that we've done is we've created a wick view. So that wick staff they have a right to only know certain amount of data about a consumer. So instead of being able to give them that whole shebang of the health record, we now
[00:17:07] have a view where they can just see the data that they're eligible to see. And that's a huge step forward. So it's really about taking the data that's interoperable, making it usable, and then making it available. Whether it's in the EMR, like we're pushing things in the EMR to EMRs down in Santa Cruz.
[00:17:25] making it available in our portal, sending data via direct secure messaging. Uh we really got to understand how our participants want to receive the data and then we got to get it to them in that way.
[00:17:39] Such a key element though when you think about it, John, the ability to like you can move blobs of data. What are the pieces you need to make decisions especially as you know we evolve through our own health journeys and what does your clinician need in that particular moment? But there's got to be times when an exchange breaks down, whether that's clinically or operationally. How do you catch that? And then what are you doing
[00:18:00] to triage and fix it going forward? When your system is being used, you know, if some if there's a problem, people let you know. So, I think it's having the right vendors, the right staff to to execute quickly and timely to fix that problem. We we really haven't had many of those. Um, I mean, we've had some in our transition from our legacy system to our new system, but we're fairly stabilized now and uh, but
[00:18:27] we had dual systems going this whole time so that if if one fail, we have this backup, you know, and what we've seen is that health information exchange is really valuable in the situations when EMRs go down. If if an institution is breached and they have to take their EMR down, how did they get access to the data? Well, we that's we have a portal.
[00:18:52] We had a a very large EMR go down last year and it went down for about 14 hours and people that are doing providing on call services because it was a I think it was a Friday evening. They're providing on call services to their patients and they had no access to their EMR. Well, guess what they had access to? They had access to our portal system. Not only could they see their records for that patient, they could see
[00:19:17] all records for that patient and they could provide the on call care to that consumer without disruption. Otherwise, they were going to be sitting there guessing because, you know, paper charts don't exist anymore and some backup systems aren't as effective when you're doing on call and you're not on site.
[00:19:36] Um, so that's what we look at from a health information exchange is that we're really a partner in that world. Um, and we're not the legal record, but we are a very uh strong resource for consumers when you need access to it.
[00:19:53] You help build into the resilience planning for an organization, which typically you don't hear about, hey, at what point do you utilize the H.Iie for the information that you may need during downtime or otherwise. So great perspective when and you touched on it earlier when you think about what real interoperability looks like let's just say 3 to 5 years down the road what do you want the experience to be and how
[00:20:18] far away do you think we really are from it the experience that I really would like to see happen is that you know I think of it more like the patient center data home model where the patient has a data home right and no matter where they're being seen across the country that data comes back home and they don't have to carry it, right? They don't have to
[00:20:43] carry the data back and guess what? It's already in the hands of the provider when they go in for their followup. That's really what I think really needs to happen. Um, and you still need to leverage the control of the consumer over that data flow. You have to allow them to opt in or opt out, right? They have to they have to have control of their own data and we do that at SAC Valley as well. You can opt out of data
[00:21:08] sharing. You can revoke op uh revoke your opt out. Um we have all that. And so that's really what I think it's about. It's about making sure that you're healthy that it gets back to those that need to know what happened with you and can help you in your followup and your and your care uh post that visit. So that's that's really what I think healthc care should look like.
[00:21:32] How far are we away from that? We're a little ways away, you know. Um I think as fire comes and really starts to take a good strong hold in interoperability and people really embrace it, I think that that's going to go a long ways. But we really have to figure out how do we leverage these technologies in a push as a part as opposed to a pull and how do we get it
[00:21:58] to the right place and I think that's where regional hies can really come into play the patient center data home model that civotas supports and we are participant in that's a great start right where we're we're exchanging ADTS amongst hes across the nation who participate in that. So, if you're seen in Indiana and you're a California resident, we get that data back, right? And then
[00:22:23] we can get that data to your provider to let them know, hey, they were on vacation, but they had an emergency situation and here's what happened. Now, now the doctor provider knows, hey, this is where they had care. Now I can follow up, find out what did the doctors find, what was the result of that visit and then what do we need to do to help the patient, you know, regain health or rehab or u watch out for what
[00:22:49] medications do we need to change or add. Right? So that's really where I think it's going to go and where it needs to go. And I think that the frameworks that are in place, I think they're they're getting there. And as we close out, your final words of wisdom in terms of what's happening in interoperability with policy with the different aspects of data sharing, putting hands on it from a consumer perspective, like what do you
[00:23:13] believe everybody needs to know at this point in the journey? I really think that you know there are certain organizations that need to stop monetizing health data and I think that we also have to fund health interoperability.
[00:23:28] So this is not something that you know I think people should go out and make millions and millions of dollars for. I mean this is really about taking care you know making sure that health data is in the right place at the right time to have the best outcome for the patient.
[00:23:45] And and we need to we need to work that out you know at the best we can. And we also have to remember it's not my data right we're stewards of the data for the consumers and the providers.
[00:23:58] And that's really what we need to serve is the consumers and the providers and and help them as much as we possibly can and be missiondriven in that manner. So that's what I hope the industry would listen to and and help us get to. But and and stop reinventing the wheel.
[00:24:16] Let's take the wheel. Let's make it better. Let's continue to evolve it, but let's not just go out and create a new wheel. Yeah, good advice. And I'm hopeful to your point also, the sooner that patients can have all that data in one place, the better off it is because we're starting to pull in our wearables and our peptides and all the other things we're doing on our wellness journeys and those are not yet in a consolidated way that can be as helpful
[00:24:40] to our providers. Thank you for what you're doing at Sack Valley Medare for the state of California and beyond and look forward to our next conversation because ideally we'll have made leaps and bounds from the things we're talking about even today. Yes, absolutely. Thank you so much.
[00:24:56] Thanks so much as well, John. And for all of our listeners, that's all for now. Thanks for listening. The conversations happening in healthcare it right now are too important to stay in the room. And that's exactly why we bring them here. If today's episode made you think, share it with someone who needs to hear it. Subscribe to the 229 Project podcast at thisweek.com/subscribe and come find us at the next event, 229pro.com.
[00:25:21] These conversations are better when more of us are in them. See you next time. [music] [music]