Would You Like to be Engaged to Multiple EHRs?

There’s strong agreement that for meaningful use of Healthcare IT, patients and families need to be “engaged.” The question is, how? In Stage One, patients are to be given an electronic or paper copy of clinical summary information from office visits and hospitalizations, as well as discharge instructions from hospitals. This is good and a step beyond mere paper. But that raises the question of how this information can be used by the patient, other than viewed as if it were paper. What’s the “Quicken” equivalent of a “killer app” for patients to manage their health? (Oops, maybe “killer” app is not so good for healthcare…). The Stage 2 Meaningful Use Request for Comment proposes that patients be able to view and download their information from a “web based portal” that is a module of an EHR (considering that the incentive program is about “certified EHR technology”).

The best tool for any given patient depends on the individual, so speaking in statistical terms may gloss over some things. But let’s suppose that all EHRs were to offer such a portal. How many of them would a patient need to access? For myself last year, that would have been five (four EP and one hospital). According to an article by Peter Bach of Memorial Sloan Kettering Cancer Center, the typical Medicare patient sees seven doctors in four practices in one year, and those with multiple chronic conditions saw 11 docs in seven practices in one year. If you then throw in a hospital, that means eight healthcare organizations possibly with eight EHRs for one patient in a year. If you’re a family member caring for your children or aging relatives, multiply all that. You might have to interact with more than 20 web portal accounts, ending up with over 40 separate downloaded files (you’d probably need more than one per organization per year). Even if they’re in a standardized format, who or what will reconcile or pull them together? Will you be the one, using copy & paste with a spreadsheet or word processor? I don’t think so… If you use a web-based tool specifically designed to deal with those files, well then you’re probably using a Personal Health Record (PHR).

The problem with the current MU proposal for downloading from individual EHRs is that it implicitly endorses a “tethered PHR” model – a PHR extension of an EHR. But that PHR is not really patient-centric, because it contains the patient’s data from the organization using the EHR. Over time, the data will broaden as EHRs import and reconcile data from other sources such as EHRs or Healthcare Information Exchanges, but most EHRs aren’t there yet. And “tethered” is only one of several approaches to patient-centric health records. Other flavors include independent personally-controlled PHRs such as Microsoft’s and Google’s; health record banks; payer-based PHRs such as Blue Cross; employer-based PHRs such as Walmart’s using Dossia. They all have their strengths and weaknesses, but the personally controlled PHR has recently made some significant headway, associated in part with the Direct Project announcement re Dr. Paolo Andre’s EHR and Beth Israel’s Direct Push to Healthvault. If independent PHRs can be updated through a standard transport protocol (Direct secure SMTP), that securely pushes standardized content (e.g., CCD or CCR) into the PHR in a way that is structured and codified, as already required in Stage 1 MU, then the potential for a comprehensive, patient-centered record (not tied to any one provider) has increased. Now this isn’t magic – the patient or family member still needs to decide which data from the CCD are relevant and should be added to their master problem list, medication list, etc., as I’ve done with my own PHR. An ecosystem of innovative products (trackers, monitors) can then flourish around the PHR, given the influx of more robust data to operate on.

In preparing comments to the HIT Policy Committee’s Meaningful Use workgroup, I’ve recommended that MU should focus on the goal: getting the information to the patient or caregiver’s hands in a way that they can use, not on inadvertently favoring an EHR-centric “tethered PHR” flavor. Let the EHRs do the behind the scenes work of transmitting the patient’s info into PHRs of the patient’s choice (which might be any of the flavors I mentioned), enabling patients to interact productively with a tool they like, rather than making them “polygamously engaged” to multiple EHRs/portals and encumbered with lots of files to manually import into PHRs. For patients who don’t want to use a PHR, they can still get their electronic copies (as in MU Stage 1). But for those who want the opportunity to have their electronic information together in one place, there’s a great opportunity for MU, defined in a way that allows flexibility and innovation, to leverage the Direct Project and the existing and emerging clinical content standards like harmonized (I like that word) CDA Consolidation Project templates building upon CCD/C32.  

So, patient and family engagement: yes! Let this relationship between patients and HIT be productive, patient-centered, simple-to-use and... engaging, please!