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The Need for a Longitudinal Patient Record In A Complex, Fractured System

by John Moore | October 01, 2021

The longitudinal patient record – not to be confused with a longitudinal care plan – is often discussed as a feature of an evolved healthcare IT landscape. It is also viewed as essential in the shift to value-based care, enabling more effective population health management and an essential component of utilization management for value-based contracting.

But what would it mean to truly implement it in our current system? Creating better ways for patients to access their own full-length medical records would certainly be an improvement, and despite regulatory and business innovation efforts to inject this idea into the process, the reality is often more complicated.

We’ve been writing about longitudinal records since the earliest days of Chilmark Research. As the health care world shifts towards better implementation of omnichannel care – the multi-faceted, unified patient experience that encompasses trips to the doctor’s office, virtual care visits, trips to the pharmacy, to urgent care, and more – the development and implementation of longitudinal patient records will play a crucial role in coordinating the right care at the right time.

In this video, Chilmark Research founder John Moore dives into these questions and more, as we examine how the future of omnichannel care and the LPR are intertwined.

Video Transcript:

John Moore: [00:00:00] Welcome back, everyone, to the Chilmark Research Channel. I’m John Moore and I am the founder of Chilmark Research, and today I’d like to talk a little bit about what’s happening with the longitudinal patient record, i.e., can a longitudinal patient record even be achieved in today’s omnichannel care world?

John Moore: [00:00:47] So to get started, what we’re talking about here is the longitudinal patient record, and the longitudinal patient record is basically that full record of your health care and the care you receive: anything from labs to prescriptions, medications to diagnoses, to your visits with your doctor and the notes that they take on that visit. Now what’s happening in the marketplace today is that we’re moving to more virtual care and virtual care venues, and this is highlighted in our soon to be published report on virtual care management and virtual care management as part of a larger picture called omnichannel care. And omnichannel care represents your physician, that virtual care visit that you do via telehealth on an as needed basis, it may be provided by your payer, your health insurance company, or it could be through urgent care, like your kid falls and gets a bad cut and you have to get stitches.

John Moore: [00:01:54] So there’s a number of these different avenues of where you can now get your care, even at a CVS or a Walmart. But what happens when that happens? Your records are being stored in each of these places individually, and it’s not in one central repository. It’s everywhere. So, what do we do to create that complete longitudinal patient record? That’s the problem, because now we have multiple venues that we’re now receiving care from and these aren’t necessarily connected with one another, as we covered in our integration report that was published a couple of months ago. There is the Cures Act and as part of the Cures Act, there was a number of regulations promulgated with regards to the sharing of health records and how providers have to share their records with you. And you have the right to ask for those records and for them to be delivered to you digitally. And that is through a number of different standards, primarily through what’s called the FHIR standard that is now being widely deployed and used.

John Moore: [00:03:01] In fact, I’m an Apple fanboy and my iPhone has Apple Health app and via the Health app, I have subscribed to my doctor’s MyChart, which is by Epic. So, I actually have all my clinical records being imported into the Health app on Apple. So, it’s there for viewing and potentially for sharing. And at the recent Apple WWDC event last month–Worldwide Developer Conference– Apple announced new additions to the Health app, including the ability of they’re going to have integrations to a wide range of EHR vendors so you can share your records with those EHR vendors. So that’s going to create some capabilities of interoperability, but it’s only a select number of EHRs that are covered there. And as those in the industry know, there’s probably about a thousand different kinds of EHRs in the market today, from specialty EHRs for safe physical therapy to more broader based EHRs like Athena Health for primary care or for, say, NextGen or other cardiac specialty EHRs. And of course, there’s Cerner and there’s Epic at the acute level and Meditech, etc. So it’s not easy pulling these together even with these standards.

John Moore: [00:04:39] What we have now today is that we have a situation in which your records are scattered everywhere. Who’s going to put them together? The previous administration, as part of their policy, they really thought and pushed forward the idea that the patient is going to take control here. They’re going to go out there and they’re going to gather their records. They’re going to be the stewards of their records. They’re going to distribute their records as they see fit as a need arises.

John Moore: [00:05:12] But the problem with that is: people don’t do that. I mean, I’ve been in this industry for 13, 14 years studying it. I got started with personal health records and all along, it’s always the same problem. The consumer is not going to be interested in putting together a digital filing cabinet of their health records. It’s simply not going to happen. And it’s not that I’m deriding the policy that patient consumers shouldn’t have access and control of the records. Absolutely, they should have that. But it is basically tilting at windmills to think that the consumer is going to be the one that’s going to be aggregating and pulling together that longitudinal patient record on their behalf to share with others. It’s simply not going to happen. And that is the problem.

John Moore: [00:06:08] So does it even matter to have a longitudinal patient record? And I would argue absolutely. It does matter. And there are a couple of major reasons why. First off, medications. If you don’t know, if your doctor primary care doctor doesn’t know that you’ve had a telehealth visit and you were prescribed a given medication and you’re taking that medication and they want to prescribe something for you for some other condition, there can be side effects in terms of how those two medications interact with one another. That could be quite serious, even lethal. So that is an issue.

John Moore: [00:06:52] Secondly, what about diagnosis and early diagnosis of, say, cancer? If you were presenting some symptoms that maybe you shared in a telehealth visit or an urgent care center or a retail clinic, but a specialist doesn’t know about that or your PCP primary care physician doesn’t know about that. That may lead to a delayed diagnosis for a serious condition that could have serious consequences long-term, in terms of how you are treated for that given disease that then appears later in life.

John Moore: [00:07:31] And lastly, clinical trials and research! Just basic life science research: what life scientists need to develop new therapeutics and new care protocols, even clinicians developing new care protocols, is that longitudinal patient record to understand how you, as an individual with your particular physiology, responds to medications to various treatment options and whether or not you have serious side effects or not? So serious side effects to fine tune what ultimately you’ll be presented with in terms of a clinical protocol.

John Moore: [00:08:08] For example, I have a nephew who has mental health issues, and today when you have depression, it’s a hunt-and-peck type of thing; one medication after another until finally something clicks. It took two years to find the right medication cocktail for him to treat his depression. What if through the research and having these longitudinal patient records for pharmaceutical companies to use, they could determine what kind of cohort of patients he represents that for that particular cohort of patients. This is the medication to choose and that that treatment protocol comes into place in three to six months versus two years. Wouldn’t that be revolutionary? So lastly, for clinical trials recruitment, they need to know that full longitudinal patient record to know what you have and have not taken what you have and have not done to treat a given disease.

John Moore: [00:09:10] I know for myself and the chronic disease that I have for some clinical trials I’m exempt from because of previous treatments and protocols that I’ve gone through. And then for others, I am open to potentially participating in if if I choose to do so. So that’s why I think it is important to try to figure out; how do we do this longitudinal patient record? What options are available to us today? Not many. Is this a market opportunity? Potentially.

John Moore: [00:09:43] For example, today you could subscribe to Picnic Health and for roughly $800 in the first year, they will go out and they all compile your complete medical record and present it to you. And then from then on, I think it’s around 40 dollars a month to maintain that record for you. That gets expensive, but Picnic Health does have an option, and another company called Citizen has a similar option where they will do it for free; compile your record and maintain it and curate it over time, if you agree to share that record with–in an honest fashion–with life sciences companies and they get paid to share that data with life science companies and life science companies will use that for their research for clinical trials, recruitment for a number of different things.

John Moore: [00:10:40] So there is a give and take here. It’s up to you as to whether or not you feel the risk of sharing your health data is worth the reward of having a longitudinal patient record. But today, that really is the only option available to you unless you on your own wish to compile that complete LPR.

John Moore: [00:11:03] So thank you for watching this video today, and I hope you got something out of it. And if you did, please do a like for us, and I would also encourage you to share this video, if you have someone in your life that would get some value out of this or could learn something from this or one of your colleagues. And lastly, please comment. What do you think? Do you think having a longitudinal patient record is critical in this industry? Do you think we’re really losing something by moving to omnichannel care and this fragmentation, potential fragmentation–actually not even potential, it’s happening right now–of the longitudinal patient record? Is that a real risk that we should be paying attention to? And I’ve listed a couple of options with Picnic and Citizen or doing it yourself DIY. But if you have other ideas or know of other ways that someone can pull together their longitudinal patient record in an omnichannel care environment, I’d love to hear about it. So please comment. Thank you.

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