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Free Our Health Records: Get your health records and help save lives

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What if a million patients ask for their health records all at once?

Keep in mind that each person would not be submitting a single request. We get our care from multiple health care providers, often across different health systems, with electronic health record systems that don’t really talk to each other. The older we are, the more chronic conditions we have, the greater that number of different providers.  

What would the records look like? Where would they go? How would they line up with each other?  Request your medical records and find out.

A day of action

The idea of a mass records request has emerged as an assertion of patients’ rights, and in part as a reaction to proposed amendments to Meaningful Use of Certified Electronic Health Records (EHRs) Stage 2 regulations which effectively eliminate patient engagement as a Meaningful Use measure (a measure requiring that at least 5% of patients seen by a provider view, download or transmit their health data in order for the provider to “check the box”).  

EHR systems, built to facilitate local (single group, single institution) workflow and reimbursement, aren’t really designed for collaboration beyond the four walls of the local group or institution, or for communication and sharing with patients.

What if a day of action around medical records access were to take place, as proposed by some advocates? Would the electronic health record system, fragmented into its myriad doctor-centered and hospital-centered silos, crash? And beyond that – how will it work, exactly? Where will people store their records (safely)? Will they need to go to each and every one of their doctors and hospitals and request their records, and somehow hope to blend them into some unified form that made sense? Can anyone do this?

Electronic Health Records (EHR) systems are built to facilitate provider-oriented workflows in doctors’ offices and hospitals. They are built around documentation, not collaboration. When the federal EHR Incentive Program (Meaningful Use) required that EHRs be able to share records with each other, the result was something of a bolt-on set of functions. EHRs had to build a standardized type of message (Continuity of Care Documents and consolidated clinical summaries, which are XML documents), and had to be able to send them from one system to another (sometimes through a secure email-like system called Direct, if more connected methods were not available). In reality, however, clinical summaries around referrals and transitions of care often drop to paper and are faxed.

Patient access to their records is a separate effort when it comes to the design of EHR systems. Often sold as a separate package to EHR users, patient portals are the main way people gain insight into their clinical records. In integrated delivery networks, where everyone is on the same system, a single portal can show critical information on everything within that system. The result is satisfying (“I can get all my Kaiser records in one place!”) – but even there, people move into and out of such a system over their lifetime, or sometimes use services (such as emergency services) outside the network.

Most people, however, get their healthcare from multiple places, and each place may use a different EHR system, some with good patient portals and some not. And each place requires a separate login to retrieve just the one segment of health information found there.

Is there any universal place where data from all these separate silos can be gathered, merged, and displayed in a meaningful way? Can we have a universal patient-centered longitudinal health record that is yours to keep, and take with you when your healthcare plan and delivery network changes? Something that is continuously fed and connected to the EHR systems of each of your doctors and hospitals, so that you control access, and everyone on your care team sees and interacts with the same universal data?

This may seem pie-in-the-sky, but it is actually a vision of the next generation of health IT. Can we get there from here? Current EHR systems are not built to do this. We should not expect them to.

A universal health data platform

It is important to start building this centralized data now. In order to achieve the goal of connecting everything together into a single place where patients, doctors, and the whole care team can work from the same data, we need to build the platform. By necessity, it will be outside the realm of EHRs, though it interacts closely with them. For providers who use EHRs as their primary tool in day-to-day work, this platform must function as an extension of their current capabilities. For patients, it is the unified place to get one’s data – after all, logging in to multiple patient portals simply doesn’t work.

Flow Health has built that platform. The next step is pulling data into it. The platform we have created is populated by a variety of feeds – from data requests to EHR systems (CCDs and clinical summaries as the main content at first), to hospital and emergency department Admission/Discharge/Transfer (ADT) notifications, to claims data where available, to patient-entered data on check-in for an office visit, to Chronic Care Management nurses interacting with patients and helping build patient care plans. The list goes on.

Once this data is blended together, rendering that data into meaningful experiences makes it useful. Flow Health has created a provider-facing app that allows all care team members to see a feed of posts about patients and review patient timelines (in addition to direct secure messaging between peers). We have also created a patient Check-In app that replaces in-office clipboards, is pre-populated by already-known data, and helps build consent and gather direct data. In addition, we have created a patient-facing app that allows patients to see their blended data in one place, manage their care teams, communicate with their care providers, and take that information with them wherever they go, even after changing health plans, doctors or hospitals.

Further, to remove barriers to adoption, Flow Health has made these apps free to everyone.

Blocking data kills

Collecting clinical data into a single, usable platform is not just a “nice to have.” It is essential for improving the quality of healthcare delivered in this country. Improving communication and information-sharing can reduce patient injuries from medical errors by 30 percent. This is staggering, given that as many as 440,000 people die in hospitals each year as the result of preventable medical errors, according to the Journal of Patient Safety.

Patients: Request your records. When you visit your doctors, ask them if they are using the Flow Health Check-In app. If not, ask them to do so. From there, you can identify your care team and automatically request your records from them. From the Flow Health patient app, you can do the same thing. You don’t even need to go into the doctor’s office to do this.

Doctors and hospitals: Do your part to help make this happen.

1.  Take the pledge at www.freeourhealthrecords.com; and

2.  When you receive a records request, respond to it promptly.

We have created easy, step-by-step ways to generate a clinical document from all the Meaningful Use-certified EHRs, and upload it easily into the platform, through a secure web connection. There is no excuse for not responding to a data request. In fact, the HIPAA Final Rule from 2013 requires that a physician using an EHR deliver an electronic version of patient data promptly upon request. We have made this process easy. No paper, no faxes – just a few clicks, and you’re done. From any EHR.

Free Our Health Records

So, circling back to the original question – what if a million patients requested their records all at once? Where would they put the data? How can they digest the information and use it in ways that matter? Flow Health has the solution – we have built the platform that can facilitate this. We welcome a “day of action.” Start by visiting FreeOurHealthRecords.com.

Robert Rowley is Co-Founder and Chief Medical Officer of Flow Health Inc., a free secure network that connects consumers, providers, and payers around lifetime patient records, and that powers FreeOurHealthRecords.com. David Harlow is working with Flow Health and is a health care attorney and consultant who blogs at HealthBlawg.

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14 replies »

  1. MedKaz is that product. It does provide total, complete, international interoperability today. If you can log on to a computer, conduct a Google search and open a browser, you can use MedKaz!

  2. Some observations. First, for your service to be available to everyone, you can’t depend upon EMR vendors to integrate with Flow Health. They have little incentive to do so which is why they haven’t already done so even with each other.

    Second, can you handle paper records? If not, the patient can never aggregate all his/her records.

    Third, you haven’t explained how a patient’s records get onto your platform

    Fourth, your system is not, in fact, free to everyone. The government (that’s you and me) through Medicare pays providers. And employers or insurers must pay for non-Medicare patients — which I suspect will be a very hard sell.

    With all due respect, until these issues are handled, I think your claims are overstated.

  3. Some observations. First, for your service to be available to everyone, you can’t depend upon EMR vendors to integrate with Flow Health. They have little incentive to do so which is why they haven’t already done so even with each other.

    Second, can you handle paper records? If not, the patient can never aggregate all his/her records.

    Third, you haven’t explained how a patient’s records get onto your platform

    Fourth, your system is not, in fact, free to everyone. The government (that’s you and me) through Medicare pays providers. And employers or insurers must pay for non-Medicare patients — which I suspect will be a very hard sell.

    With all due respect, until these issues are handled, I think your claims are overstated.

  4. Kudos to Flow Health for work towards consumer/patient-centric products and systems. I concur with previous comments that this won’t solve the interop problem. But this “flow” of development can occur in parallel. As a consumer advocate in this arena for many years, I reiterate my long-time plea: you absolutely gotta make/keep this simple for consumers. All engaged in this dialogue know that but I can’t help feeling that we (companies, developers, HIT/EHR geeks, ONC) lose our way in the complexity. If it weren’t so trite and overused an admonition, I’d say we desperately need a Steve Jobs/Apple-level visionary and company. Is Flow Health that company? Not sure; don’t know enough about their products. But, again, at least they’re in the game trying.

  5. John – Privacy protections in the Flow Health platform are addressed by building a patient-centric data model, where the patient is at the center of data permission-giving and access. When the patient signs on as a user (which happens via the patient app or via the patient Check-In app), she can claim her data, and add to it by requesting additional records from other clinicians. It is the patient who determines who sees her timeline. The patient can add or remove physicians/practices from the care team and therefore add or remove permission to view her data.

    The concept here is that the data belongs to the patient, and moves with the patient across their lifetime. This is a fairly fundamental change to how traditional EHRs are organized, which are provider-centric (and therefore fragmented when it comes to the complete story for a given patient). Provider-to-provider clinical data sharing can get complicated, needing external proof of permission in order to share. This is made even more complicated when it comes to privacy and permissions using traditional HIEs. The Flow Health approach is that the patient is at the center, and grants consent to view the universal record about herself to care team members.

    The data is maintained in a private and secure HIPAA compliant manner.

  6. John, Merle — The business model consists of delivering services needed by patients, providers and payors in the effective and efficient management of patient care. Providers and payors may contract for services built on top of the patient data layer and offered either by Flow Health (the CCM service is one example, described in greater detail here:
    http://blog.flowhealth.com/chronic-care-management-as-an-outsourced-service/
    — and while it is a Medicare-reimbursable service, there is no reason why a commercial payor or a provider organization in a global payment contract might not decide to pay for a parallel service; if the past is prologue, it is likely that CCM services will be reimbursable by commercial payors within a few years). There are additional services enabled by the data layer and Flow Health’s capabilities tailored to payors and the growing numbers of risk-bearing provider organizations irrespective of the ultimate source of payment. There are other services offered via the Flow Health apps which yield additional reimbursement to providers (regardless of payor) for which providers pay Flow Health.

    The data layer and the patient and provider facing applications are provided free of charge. We expect that the comprehensive view of the patient record will enable providers to manage care more effectively, thus benefiting all parties.

    Flow Health’s open API will make full longitudinal health record information available for integration with apps, with free access to developers to create a community around the data.

    Merle — Anything in the EHR can be brought into Flow Health. This includes full chart notes, lab test values, any and all observations – in short anything that an EHR can put into a C-CDA can be mapped to Flow Health data objects. Direct API linkage with EHRs that support such connectivity allow for real-time two-way updating, making the Flow Health experience and the local EHR experience seamlessly connected.

  7. Adrian — The patient-facing longitudinal health record offered by Flow Health is just one piece of a larger puzzle. As patients and providers sign up for Flow Health, the universal record will be continually updated with new activity (office visits, lab results, reports from specialists, etc.) and each authorized user — authorized by the patient — with access to a given patient’s feed will be able to see new activity as it happens (pushed to apps and portals), and post to the feed as well. Updates will also flow back out to EHRs at the various providers as appropriate. The platform is a hub for information and communication around patient data, whether it is EHR data, personal tracker data, health app data, etc. It is not designed to be stale; it is designed as a patient-centric platform where patients are certainly first-class citizens; it is in place today.

  8. Merle, we all agree that the future is through the patient. I like the phrase: “Nothing about me without me”.

    The Web technology now exists to put the patient in the authorization loop. That technology also reduces the incoming interoperability costs for the “silos” so it is much preferred when a service provider needs or wants to accept information from an external source. This is why HHS needs to design the API mandate for Meaningful Use Stage 3, lest we be stuck with the current information-blocking scenario. We need a strong and patient rights based Public API.

  9. Adrian, APIs are incredibly useful in particular well defined situations but IMO they do not solve the interoperability problem in healthcare.

    For example, when John Smith comes to you for care, how do you know when you query your network/system that you bring up all the records belonging to the John Smith in your exam room — and only his records? How do you get providers and their vendors to accept your premise that they should cooperate and embrace APIs? How do you ensure that a patient’s records are secure and private? How do you manage consents and the exchange of records across state lines when a patient has not addressed these issues in advance? And who pays to sustain your system? etc., etc., etc.

    I agree wholeheartedly with David and Bob that the answer to interoperability is through the patient not through trying to connect silos. The fact that we don’t have interoperability after spending ten years and $30 billion—and don’t expect to have it for another ten years— tells me that the basic assumption that we connect silos is fundamentally flawed and will never work. Isn’t it time to stop wasting more time and money and adopt solutions that work today?

  10. David, it would help if you explained two things: your business model and how records get uploaded to your platform.

    Given what you have written in your blog and on your site, the only money that appears to change hands is the CCM payment from the government to the provider. If that’s the case, how do providers who do not treat Medicare patients, including pediatricians as an example, make money with Flow Health?

    Also, how and when do progress notes, operative reports, test reports, etc. find their way onto your platform? And how do you handle paper records?

  11. How many different PHRs that doctors and their EHRs don’t access do we need? How many PHRs with different data models (so that we can’t move from one to another at will) do we need?

    The solution is not more stale copies of our data in more places? It’s time to rally around the Public API where all data holders expose the same standard interface in a way that is controlled by the patient’s choice of automated authorization server.

    The Public API can be:
    – bidirectional so EHRs can both get and put information using query methods familiar all over the Web,
    – automated so access to patient data does not require patient action unless that’s what they want. Just like we have a choice to set up auto-pay we can grant auto-access one service provider at a time,
    – used by PHRs as well as EHRs as well as wearables and non-HIPAA sources because the data stays in place. Making copies of data into some central repository is always behind the times because the bottleneck repository needs to be updated for each new data type and business model.

    Freeing our health records means making patients first-class citizens in all aspects of health information exchange by implementing a Web-standard Public API everywhere. That work is happening in the HEAlth Relationship Trust workgroup http://openid.net/wg/heart/

    Please join us.

  12. Guys, can you tell us a little bit about the privacy protections you’re building into this?

    There’s obviously a concern when this kind of data shifting is involved …

    Bob, I’d love to hear from you given your background.

    As a business, how does this work?

  13. “Is there any universal place where data from all these separate [disparate healthcare provider] silos can be gathered, merged, and displayed in a meaningful way? Can we have a universal patient-centered longitudinal health record that is yours to keep, and take with you when your healthcare plan and delivery network changes?”
    Good question, and the answer is yes—but with all due respect, it doesn’t appear to be Flow Health.
    As I read your website, your focus is on Medicare patients and your business model is driven by CMS paying providers who offer “Chronic Care Management (CCM) Services to Medicare patients. And according to the CMS website, these CCM services apply only to “eligible providers” who use “certified EHR technology” and “eligible patients,” defined by CMS as having multiple (two or more) chronic conditions …. and that place the patient at significant risk of death… or functional decline.”
    Thus, Flow Health, while an interesting concept, is limited to serving fewer than 50 million older people. What happens to everyone else – the 265+ million of all ages, from infant to baby boomer, not covered by Medicare, those covered by Medicare but don’t qualify for CCM, those cared for by specialists, and those 200,000 or so doctors who continue to use paper records?
    There is a system available today that does provide what you are looking for, a single place where a patient’s complete medical record from all his/her providers is aggregated and can be accessed by any provider treating the patient anytime, anywhere. It’s called MedKaz® (see medkaz.com). It works for every provider, irrespective of their patients’ ages and how they keep patient records, and every patient, irrespective of their age or health issues. (Disclosure: our company, Health Record Corporation, created MedKaz.)

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