Eyes Wide Shut – Patient Engagement Pitfalls Prior to Meaningful Use Reporting Period

July 1, 2015 – the start of the Meaningful Use Stage 1 Year 2 reporting period for the hospital facilities within this provider integrated delivery network (IDN). The day the 50% online access measure gets real. The day the inpatient summary CCDA MUST be made available online within 36 hours of discharge. The day we must overcome a steady 65% patient portal decline rate.

A quick recap for those who haven’t followed this series (and refresher for those who have): this IDN has multiple hospital facilities, primary care, and specialty practices, on disparate EMRs, all connecting to an HIE and one enterprise patient portal. There are 8 primary EMRs and more than 20 distinct patient identification (MRN) pools. And many entities within this IDN are attempting to attest to Meaningful Use Stage 2 this year.

For the purposes of this post, I’m ignoring CMS and the ONC’s new proposed rule that would, if adopted, allow entities to attest to Meaningful Use Stage 1 OR 2 measures, using 2011 OR 2014 CEHRT (or some combination thereof). Even if the proposed rule were sensible, it came too late for the hospitals which must start their reporting period in the third calendar quarter of 2014 in order to complete before the start of the fiscal year on October 1. For this IDN, the proposed rule isn’t changing anything.

Believe me, I would have welcomed change.

The purpose of the so-called “patient engagement” core measures is just that: engage patients in their healthcare, and liberate the data so that patients are empowered to have meaningful conversations with their providers, and to make informed health decisions. The intent is a good one. The result of releasing the EMR’s compilation of chart data to recently-discharged patients may not be.

I answered the phone on a Saturday, while standing in the middle of a shopping mall with my 12 year-old daughter, to discover a distraught man and one of my help desk representatives on the line. The man’s wife had been recently released from the hospital; they had been provided patient portal access to receive and review her records, and they were bewildered by the information given. The medications listed on the document were not the same as those his wife regularly takes, the lab section did not have any context provided for why the tests were ordered or what the results mean, there were a number of lab results missing that he knew had been performed, and the problems list did not seem to have any correlation to the diagnoses provided for the encounter.

Just the kind of call an IT geek wants to receive.

How do you explain to an 84 year-old man that his wife’s inpatient summary record contains only a snapshot of the information that was captured during that specific hospital encounter, by resources at each point in the patient experience, with widely-varied roles and educational backgrounds, with varied attention to detail, and only a vague awareness of how that information would then be pulled together and presented by technology that was built to meet the bare minimum standards for perfect-world test scenarios required by government mandates?

How do you tell him that the lab results are only what was available at time of discharge, not the pathology reports that had to be sent out for analysis and would not come back in time to meet the 36-hour deadline?

How do you tell him that the reasons there are so many discrepancies between what he sees on the document and what is available on the full chart are data entry errors, new workflow processes that have not yet been widely adopted by each member of the care team, and technical differences between EMRs in the interpretation of the IHE’s XML standards for how these CCDA documents were to be created?

EMR vendors have responded to that last question with, “If you use our tethered portal, you won’t have that problem. Our portal can present the data from our CCDA just fine.” But this doesn’t take into account the patient experience. As a consumer, I ask you: would you use online banking if you had to sign on to a different website, with a different username and password, for each account within the same bank? Why should it be acceptable for managing health information online to be less convenient than managing financial information?

How do hospital clinical and IT staff navigate this increasingly-frequent scenario that is occurring: explaining the data that patients now see?

I’m working hard to establish a clear delineation between answering technical and clinical questions, because I am not – by any stretch of the imagination – a clinician. I can explain deviations in the records presentation, I can explain the data that is and is not available – and why (which is NOT generally well-received), and I can explain the logical processes for patients to get their clinical questions answered.

Solving the other half of this equation – clinicians who understand the technical nuances which have become patient-facing, and who incorporate that knowledge into regular patient engagement to insure patients understand the limitations of their newly-liberated data – proves more challenging. In order to engage patients in the way the CMS Meaningful Use program mandates, have we effectively created a new hybrid role requirement for our healthcare providers?

And what fresh new hell have we created for some patients who seek wisdom from all this information they’ve been given?

Caveat – if you’re reading this, it’s likely you’re not the kind of patient who needs much explaining. You’re likely to do your own research on the data that’s presented on your CCDA outputs, and you have the context of the entire Meaningful Use initiative to understand why information is presented the way it is. But think – can your grandma read it and understand it on HER own?

About the author

Mandi Bishop

Mandi Bishop is a hardcore health data geek with a Master's in English and a passion for big data analytics, which she brings to her role as Dell Health’s Analytics Solutions Lead. She fell in love with her PCjr at 9 when she learned to program in BASIC. Individual accountability zealot, patient engagement advocate, innovation lover and ceaseless dreamer. Relentless in pursuit of answers to the question: "How do we GET there from here?" More byte-sized commentary on Twitter: @MandiBPro.

7 Comments

  • I wonder how online banking started and how they responded to errors in the accounts. Obviously, we are early in patient portal technology and medical data is more complex and more personal than financial data. Your are correct, what is needed is context, not just the raw data. Maybe even starting with disclaimers. For starters, it might be more useful to only show a summary of an inpatient stay with only discharge medications listed.

  • Mandi, most readers of this blog understand the perspectives presented but are unable to articulate the way you have. Thanks.

    John Sharp asked how did the banking system get started online. Perhaps we can learn, but I am sure it’s success has nothing to do with technological challenges, but more with overcoming vendor egos and walled gardens.

    With so many EHR vendors and so much competition that is bound to happen. Eventually things will shake out and clear leaders will emerge.

    Standards are either dictated or emerge as de facto. Regulators are good at pushing the first option, and not unreasonably because industry is not taking the lead and there is no de facto standard.

    Pharma industry established CDISC (http://www.cdisc.org) to create data standards among clinical trial stakeholders and submission to FDA because it started hurting the pockets.

    When will that happen to EHR?

  • One problem the medical world has is the sheer number of standards (CCDA/HL-7, etc).
    At to this the versions within a standard. I remember trying to do some HL-7 work, yet the versions of HL-7 were not compatible.

    Online banking and medical is apples and oranges.

    In online banking, the data set is much smaller per person, and it behooves the bank to be correct or they may lose money.

    On the medical side, it seems the attitude is: the gov’t says you need access to your data, so…here it is…have fun.

    There is no penalty to the EHR vendor for bad/confusing info, they point the finger at the doc, who shrugs his shoulders and says, “I don’t know what’s going on, I’m just trying to comply with MU.”

  • Convenience, as stated here, is key. Like anything else (new iPod, cell phone, remotes), if it’s not convenient, quick, easy to understand, and intuitive, it’s not going to be used. This is such an interesting dialog. We’re on a different side of this, as a small EMR vendor solely for the integrative medicine physician (http://www.power2practice.com/patient-engagement). As such, our doctors don’t have to attest to MU (yet). In a way, this frees us up to tackle that patient engagement arena even harder. Our portal is secure, connected, and SSO in the cloud. We spend almost all of our time trying to figure out how to make the software easy to use in both directions. If our doctors can’t/won’t use it, there’s no point in making it the best possible for the patients. But without the patients, the doctors have no one to engage.

  • But how can we incorporate low-tech solutions to engage patients? Check out the Right Question Institute. We have developed a strategy called the Right Question-Effective Patient Strategy (RQ-EPS) that engages patients in their healthcare and improves communication between patients and doctors. The strategy teaches patients to ask their own questions so they can make better decisions about their care. More info here: http://rightquestion.org/healthcare/

  • I think the most powerful question from this rests at the very end of the article: “But think – can your grandma read it and understand it on HER own?” This should have been on everyone’s mind when designing meaningful use! The ease of use and patient engagement factors should be the limiting criteria for this initiative. If the least technologically savvy are able to use and understand the changes, then there is a great chance of this working effectively. However, you already set yourself up for failure if they aren’t able to understand the changes by eliminating a significant portion of the patient population that would receive the most benefit from this.

  • There is a simple answer to the problem of garbage data being presented to the patient. Prior to leaving the office, Have the patient login and confirm the information is correct. In our portal, the patient can update the information and then the provider can make sure it is correct when it appears in the note. I do think clinical notes need a better structure to explain what the diagnosis is and why, then what the treatment plan is short term and long term. I think clinical documentation needs more of a clinical project plan.

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