Flip No. 55

Increase Digital Health Record Engagement

Take action to encourage access to digital health records.

By Whitney Bowman-Zatzkin

According to recent data from HHS, an impressive ninety-two percent of hospitals report having a system in place to provide patients with an electronic copy of their health record within three business days of a request. Yet, the number of patients requesting a digital copy of their health record in one year, according to two-thirds of hospitals: one or none. The survey hints at a striking disconnect between what’s technically available and a patient’s understanding of access. Just 38 percent of patients with an electronic health record-enabled provider report being offered a copy by a clinician or insurer. Even when patients do know that records can be emailed, many experience complications in the requesting process.

Sharing access to health records improves transparency between a clinician and patient and gives patients a more grounded understanding in their health and health decisions over time. Everyone has had that moment after leaving an appointment or hospital stay when you realize that you can’t remember an instruction or a medication name. Without an easy way to get ahold of your health record, you’re stuck with calling the clinic for clarification. But when health records are available—and patients are aware that they can get access—patients are given the opportunity to become more informed, proactive, and engaged in everyday health, planning, and health decision-making down the road.

Changing the experience for patients—and reversing the attestation report’s bleak findings—can be accomplished by increasing awareness about a patient’s right to request their medical records and the systems already in place in hospitals and clinics to provide them.

Comments

  • Thomas Thrower

    I’m thrilled to see the energy around this and definitely want to be engaged in the effort. As an IT leader for a healthcare organization, I know that there is a lot of confusion and uncertainty in this space. We for example are already doing many of the things you suggest, but like most providers, we’re doing it through the confines of our own Patient Portal. We are doing some early testing with a vendor who can provide patients with a mobile app and associated Direct Mailbox for a nominal monthly fee. In this Flip however, you are implying that we should educate patients on how to establish their own Direct Mailbox for this purpose, and frankly there hasn’t been much publicized to date on options for patients to control their own records through Direct or how much those options cost. Even ONC’s Blue Button movement is vague around the methods that should be deployed, and any organization with a secure Patient Portal can claim to be connected through Blue Button. I’m a big proponent of empowering patients to control their own data, requiring providers to send to them instead of requring them to retrieve from multiple portals. We’ve come up with a couple of different approaches ourselves, but I’d love to learn from others what ideas they have on making this a reality.

    • Whitney Bowman-Zatzkin

      Thanks for this wealth of knowledge, Thomas!
      I think you are spot on with more details being needed on the hows and whats of a secure portal. Do you all have any resources you use to have this conversation with your patients?

    • Sherry

      the reason you will never hear much about patients using direct is because no one wants to carry the burden/cost of validating them. Direct by default is a way to link physicans to one another – the flip is when people realize OMG patients are part of the care team.. – the key is the directory

      Just as an FYI when we tried at ONC to get other staffers like who were in charge of “consumer engagement) to consider including patients that teams lack of understanding of the technology often was a huge barrier to implementation. Blue Button was really nothing more than a marketing campaign and direct is a fairly limited solution compared to real HIE..

      • Brian Weiss

        Sherry – Agreed on all counts, but I think (and suspect you agree) it’s (past) time to change that…

        Too much of the “validation” stuff is a smokescreen by providers who act horrified when you suggest they are “information blockers” and point you at all the work they are doing (very, very slowly) on HIEs and provider-to-provider connections, and then explain in a pompous academic tone how we need better standards, national patient identifiers, and all the rest. When really, it’s simple for them to share data with patients (their MU2-compatible EHRs already support Direct) and nothing more is needed.

        HIPAA makes it perfectly clear that if a patient says “send my records here” providers need to do that – whether “here” is a fax number, an e-mail address, or anything else. Direct is more secure than regular e-mail so there are absolutely no justifications for providers to “block” using it under claims of “validation”.

        Patients/consumers don’t need a full-blown “HIE”. I like the term “HIE of One” in some contexts, but not if it suggests that we need all the heavy lift of an HIE (with which I am very familiar as the former head of products for a leading HIE vendor) to achieve practical patient-centered health data interoperability.

        What patients/consumers can get from patient portals (even those not supporting the true intent of “Blue Button” but still allowing for CCD download as per Meaningful Use), Direct from EHR, imaging studies they get on CD, personal devices, etc. today, is not a bad starting point.

        That’s what is driving our approach at Carebox (http://careboxhealth.com). If we can make it as easy as possible (and granted, it’s still nowhere easy enough) for patients to aggregate the health data that they have a right to get now using technology and capabilities that are in place now… we can start turning the tide…

      • Thomas Thrower

        I agree Sherry and while Brian also raises some very valid points, it’s important that we not lose sight of the fact that ONC in its rule making forced an industry of legacy software vendors to retrofit outdated IT solutions in order to meet their own interpretation of the rules. So yes while our EMR is capable of pusing a CCD-A to a Direct Mailbox, it is only configurable to do so as part of the TOC measure – not the VDT measure. For VDT our EMR solution is limited to pushing data to our Patient Portal, where the patient can then download and transmit on their own. Speaking for one provider, I would like nothing more than to have a more flexible tool set for empowering patients, and even today we could work around the EMR limitations by implementing countless workarounds and manual processes. Deciding what to do and in what sequence has to be balanced against all of the other competing demands being placed on us, including implementation of the full set of mandated MU measures, some of which make sense and some that don’t. With or without HIEs, ONC and the EMR vendors have mucked up the landscape with poorly defined rules and certification criteria that was never policed, resulting in a bunch of half-baked EMR solutions being utilized across healthcare. I’m fine with the consumer-solution vendors playing the role of disruptive hero, and welcome the opportunity to participate. At the same time though, I encourage a collaborative model that is empathetic to the sad state of things, as opposed to just bad mouthing providers who seemingly aren’t doing enough.

  • Amy Gibson

    Here is a new resource from Consumer Reports that might help as well:

    “Your Medical Data: What You Need to Know Now,” a new 16-page guide to help consumers understand how their medical records and data are being used to improve the delivery and quality of care.

    The use of large datasets, or “Big Data,” in health care has great potential. It can provide patients, doctors and nurses with new information and tools to improve the quality and coordination of care. But there are also risks, especially privacy and security concerns. The guide provides advice for how consumers can safely participate in the data revolution, while also taking appropriate steps to protect and secure their medical data from unauthorized disclosure.

    You can check out a PDF of the “Your Medical Data” guide here. If would like to receive free, hard copies for distribution to others, please send an email to nsarrubbo@consumer.org with the requested quantity and your contact info. We would greatly appreciate it if you could promote and disseminate this information throughout your network, as appropriate. The guide was produced in collaboration with AcademyHealth, with support from Atlantic Philanthropies.

    Thank you for your time and interest!

    Sincerely,

    Chuck Bell, Programs Director
    Nicole Sarrubbo, External Relations

  • Brian Weiss

    Thomas – there are quite a few product that give patients their own Direct address. Though it’s self-serving, I’ll call out one from my own startup company named Carebox which you can sign up with for free right now.

    You’ll also find other tools that we offer to help automate the process of collecting Medicare records, records from patient portals, uploading imaging studies (xrays, MRIs, etc.), data from personal health monitoring/fitness devices, and more.

    Whitney – great to see this initiative. I’ll drop you a note offline to see how we can help!

  • Rachel Watson

    Working in an ICU, I really like the idea of this flip. Many
    of our patients are sedated much of their stay. There is no way they will know
    what happened when they wake up. If they were encouraged to access their
    digital health records, this would allow them to get a better idea of what
    happened while they were in the hospital. Another area I feel this particular
    flip would be beneficial is for doctor visits when they are better. Many
    patients that are in the ICU for an extended period of time will leave with
    permanent health problems. I think that encouraging patients to explore their
    digital health records might help them to understand what happened and the
    significance. As a Nurse, if I was in that situation, I would love to go back
    and read my health records to try and put the pieces together as to what happened
    while I was sedated. I think it is a great idea to share these resources that
    are available to the patients with their
    health records.

  • Sherry

    It has been two years since this idea was posted – what are the results of the pilots?