How Will Engaged Patients Get Their Comprehensive Health Information?

As I’ve blogged previously, I believe in the right of patients to access their data. Exercising a right is one thing: deriving benefit is another. The data needs to be usable for the patient or their caregiver/designee. Google Health’s demise, or the fact that patients very rarely ask for an electronic copy of discharge instructions or clinical summary (Stage 1 MU) doesn’t prove that patients don’t want their data: it’s not an “either/or” choice between having convenient functionality vs. having access to the data (see my thoughts here). I’ve made analogies (with caveats) to online banking before. But besides health data being more voluminous and complex than banking data, people usually don’t interact with nearly as many banks as healthcare providers. I as a generally healthy person have visited eight healthcare providers in the last two years, and 12 providers in the last five years. A person with more chronic illnesses would have more providers and far more visits. Will the increasing penetration of EHRs help us as patients? Specifically, how will I get my comprehensive personal health information when it’s scattered in so many different places, electronic or not? Connecting to each one individually doesn’t seem to be the answer.

Here are some ways that might possibly happen (with italicized comments indicating my opinion of feasibility and likelihood):

1. Private or public health information exchanges that connect all my providers (or at least a critical mass), aggregate and perhaps normalize my data, and which have a patient portal with view/download capability for patients.
   A few of these exist, so it may be possible for patients to get somewhat comprehensive information if they stay in the same region or provider network for a while and all those providers share data with the HIE
2. All providers’ EHRs pushing their data to my PHR. This could work with HealthVault, though I don’t know how many other PHRs currently support Direct protocols. The patient can receives separate standardized structured documents (e.g., CCD), but then has the option to merge and reconcile data from those documents into their PHR data fields.
   Unlikely in the near future, though technically possible to the extent that Direct Project becomes adopted and required in Stage 2 MU.
3. All providers’ EHRs making their subset of my data available to me to download, which I then upload into my PHR.
   This is theoretically possible if Stage 2 Meaningful Use continues as proposed by the HIT Policy Committee, but it’s a lot of work for the patient: adds the download + upload steps to the “merge and reconcile” step of #2.
4. Patient Centered Medical Home that aggregates data from multiple providers. Possible in pockets with PCMHs and strong HIE capability
5. All providers having all my data (due to comprehensive information exchange plus EHRs consuming and storing everyone else’s data) so that no matter which one I accessed, I’d have all my personal health info.
   Highly unlikely in the near future, since most EHRs can’t consume and store most of the data. Some EHRs can import some external data, such as medication history.
6. Virtual on-the-fly health record assembled from all sources (similar to the recommendations in the PCAST report).
   Highly unlikely in the near future.

I think #1 and #2 are the most feasible today, though the percent of patients who will actually benefit from them is still low. I’d be interested in your thoughts on what is most likely to gain traction and whether there are other possibilities that are feasible today that I missed.