All of us have experienced information overload (too much paper mail, e-mail, so many web sites and so little time). Many messages compete for our attention and go unread. So when we advocate health information liquidity, and it comes, we need to be careful what we wish for!
As a patient, father and grandfather, I want clinicians to be helped, not burdened, by availability of my family’s information. So I’d like to know: what do they consider helpful? To starting think through this question, let’s consider a real world scenario rather than abstractions: myself as a patient (I consent to this disclosure of my health information).
Over the past year, as a relatively healthy person who took four sick days from work, I had the following medical encounters:
- one ER visit followed by an additional day of hospital care for a “transient global amnesia” attack, which hopefully won’t recur
- Two PCP visits: one routine annual physical, plus one following up the hospitalization
- One Neurologist office visit following up the hospitalization
- Two dermatology visits with minor procedures performed
- One GI visit, related to a procedure performed in 2008
- I also had dental and chiropractic visits
That’s 7 medical visits. The hospital has an EHR, and my PCP is starting to use one, but I don’t know about the others. Let’s hypothesize that they all are meaningful users of EHRs. Then they would have produced at least 16 electronic clinical documents: 7 clinical summaries and one discharge summary for the next provider, 7 electronic copies of health information and one discharge instructions document for me. I’m not counting other MU information exchanges such as e-prescriptions, immunization registry updates (one flu shot), nor reportable labs or surveillance. Here I’ll just focus on the clinical documents, realizing that much more information can also be exchanged (results for lab, EEG, EKG, CT, Echo; consult notes, etc.). If 2011 and 2012 are like 2010, then by 2013 I’d have 24 or more electronic clinical documents available to other providers. People with serious or chronic illnesses could have far more. So what should my providers in 2013 look at? All 24 documents? How would they decide what’s important and relevant? Most of these documents will be partly duplicative but may not list exactly the same problems, procedures, allergies, etc. To what extent does this additional information (and the effort to digest it) save time or work elsewhere? As far as I know, these aren’t simple questions with simple answers, but I’d be interested in your thoughts.
At a minimum in 2013 I’d expect the hospital to send (push) electronically a discharge summary and/or a CCD to my PCP and the Neurologist, who will then read them. The Direct Project has received a lot of attention because it has clear applicability to common scenarios like discharges, referrals, and consults. But that’s a drop in the bucket compared to all patient’s electronic health information, so there remains a big challenge about what to do with the rest of it.
As reported in the recent PCAST report, p.15, lack of liquidity and interoperability produces this problem: “In effect, the patient has fragmented into disconnected facts and clusters of symptoms. To prevent the most basic medical errors, some facts are elicited over and over again, to the frustration of patients and healthcare providers alike: ‘Do you have any drug allergies? Have you had any surgeries? Are you taking aspirin or blood thinners?’ This frustrating repetition works, albeit inefficiently, if the patient is cognitively intact and well informed, but not all patients fit that description, especially in the event of a serious or acute illness. Health providers need views of the patient that are less fragmented than at present.” And so along comes information liquidity to remedy the fragmentation – or does it? PCAST report p. 23 says: "A first point to convey is that in virtually all of our use cases, the “user” of the data does not need to be, and indeed should not be, scanning through the entire health record. Instead, the user needs to be looking at an application layer that accesses and presents a limited amount of information from a given health record or set of records."
That “application layer” has slowly been emerging in pockets of HIT, perhaps because the information exchange is still a trickle, not a flood yet. Do clinicians trust a layer to limit the information they see? What’s the right balance between too much and too little? Though I’m a standards advocate, I’m not sure we’re ready for standards in this area, but we do need research, innovation, real-world implementation testing, evidence of what works and what doesn’t, sharing of experiences, policies, and guidance. In my third and final movement of this series, I’ll talk about some promising research and projects underway to improve the usability and benefits of the information that flows. Despite what I said about the challenges, I’m optimistic that we (collectively) will figure this out.
In the meantime, while you await the finale of this symphony, Happy Holidays and Merry Christmas to you!