The Patient's Workflow

Thinks happen and then thinks happen. And this one has been very interesting to watch unfold in my brain, as I try to tie together eight impossible thinks before dinner.

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I've been teaching quality standards this week, covering things like CDA, CCD, CCDA, QRDA, and HQMF as they relate to PQRS and QDM, and various quality improvement initiatives.  In discussion of the QRDA Release 2.0, I was explaining how structured documents had created QDM based templates, mostly starting from the CCDA templates to map to the NQF Quality Data Model.

"For some things," I said, "we had no CCDA template to represent a concept, such as for the QDM Communication area.  So, the workgroup created communication templates that specialize for the different domain specific attributes, sender and receiver.  The possible values for sender and receiver include patient and provider (and also information systems, if I remember correctly).  So, the workgroup created three templates to support quality measures around provider communication:

• Communication from Patient to Provider 

• Communication from Provider to Patient

• Communication from Provider to Provider

They didn't include Communication from Patient to Patient, because that doesn't include provider communications."

But then my S4PM badge poked me in the chest (which is amazingly difficult, given its sitting in a coat pocket 2000 miles from me), and I wondered a bit more about this idea.

I had a routine physical examination a couple of weeks ago, and my provider successfully met a possible quality measure with me via:  Communication from Patient to Patient Recommended.  This is QDM speak to say that this was an action he performed, where the category was "Communication", the domain specific attributes were sender=patient and reciever=patient, and the state of action was "Recommended".  The recommendation was in relationship to weight loss, where he suggested Weight Watchers, because it isn't just the weekly weigh-ins that help, but rather the communication and support between members that also helps.

In a related development, Farzad tweeted this link to me earlier today.  The most interesting idea in the tweet and link was that these are not provider's quality measures, but rather quality measures belonging to a patient.  These are MY measures for the quality of care that I'm getting.  The link is worth reading because the authors talk about a mechanism whereby they evaluate a measure in relationship to the patient, not the provider.

We've been having some discussions on Patient engagement quality measures for providers at the Society for Participatory Medicine, but let's turn this back around.  What are my quality measures?

Where are the quality measures that patients (or consumers) can apply to themselves and their data?  Who is developing those?  And how will we automate them and deliver them to patients?  And how can patients use this information to improve their quality of care?

Somewhere, there has to be some research about  patients who get better outcomes because of what they do and can control, and an understanding of the benefits (and costs) that their own actions have with respect to the quality of care they receive. I imagine that most reading this by now are going to focus on health and wellness actions. I'd like to shift your attention away from that, because that's not where I'm headed with this.  I'm bombarded by that data all of the time, and I have a pretty good idea what I should be doing from that perspective, and what my health and wellness quality and input data and measurements are.

What I'm really after are those things that have to do with how I as a patient relate to my healthcare system, my doctors, my payers, my employer, et cetera, that could also improve my outcomes within that system.  What data should I be tracking for that?  What are the measures?  What are the guidelines?  If I were to be diagnosed with a life-altering disease, I know that one thing I would do is join a patient community.  I already have enough information to show me that the value of that action would tremendously improve the quality of care I receive.  That's a pretty obvious case, and it's quite similar to what my doctor recommended to me for weight control, save that the patient population is different.

After thinking about this some more, I reminded myself that to improve a process, you need to document it and instrument it to measure quality.  And to do this, we need to look at the patient's quality measures from the patient's perspective.  Patient engagement and empowerment isn't about focusing on patients, but rather, returning the focus TO patients.

I don't have answers yet, just questions: What is the process from the patient's perspective?  What is the patient's workflow? What are the engaged patient's guidelines?

  -- Keith

P.S.  Even HL7 is looking at what Patient Engagement means for Health IT standards at it's plenary session this fall. I'm looking forward to see what fuel that session brings to this fire (pun intended).